Special needs disability parenting BLOOM

New autism definition makes sense, a clinician-scientist says

2012-02-01T11:44:00.000-05:00

Media reports about changes to the definition of autism have led to fears that some children would no longer meet criteria to get services.

An expert panel of the American Psychiatric Association is proposing a change as it prepares the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM) – the first major revision in 17 years.

I interviewed Dr. Jessica Brian, a clinician-investigator in the Autism Research Centre at Holland Bloorview, to learn more.

BLOOM: What are the proposed changes?

Dr. Jessica Brian: The proposed changes are to have a single term – autism spectrum disorder (ASD) – that includes children who would previously have fallen into one of three categories: autism, pervasive developmental disorder – not otherwise specified (PDD-NOS), or Asperger syndrome. They’re also talking about collapsing the idea of social deficits and communication deficits, since there are so many overlaps between the two. There will not be a single category for social deficits and a single category for communication deficits but one category called social communication. In that category you have to meet criteria on all of the items but the items are extremely broad and inclusive.

BLOOM: Are there advantages to the old system of three definitions?

Dr. Jessica Brian: Not really. Currently there isn’t evidence to support this distinction between three sub-categories. Most of the research out there doesn’t find differences in terms of genetic susceptibility – so the three sub-categories seem to have the same genetic basis. That’s why you’ll find a family where one child has Asperger’s and one child has autism. And prediction of outcome isn’t supported by the three distinctions. When we follow kids in research we find they typically stay within the spectrum, but they move up or down in terms of whether they meet the full criteria for autism or the fewer criteria for PDD-NOS. We don’t think of them as separate disorders, but as different intensities across a continuum. In my clinical work, the distinctions between the sub-categories can also be confusing for families.

BLOOM: I’m surprised, because I thought diagnosing a child with autism was more precise?

Dr. Jessica Brian: If you have a room full of autism experts seeing one child, they will usually agree that the child fits somewhere on the autism spectrum but there will not be good agreement about which sub-category. It is challenging to identify exactly where a child sits on the autism spectrum and that’s what’s prompted these recommendations.

BLOOM: Are there any other advantages to having one definition?

Dr. Jessica Brian: We think one definition could expedite the assessment process, because we won’t fuss about whether the child has PDD or autism, we just know they have ASD and we can move them into services more quickly.

BLOOM: I know there’s been concern by parents that higher-functioning children will no longer qualify for services.

Dr. Jessica Brian: In Canada it’s extremely unlikely that kids with existing diagnoses would ever be re-diagnosed unless parents specifically want it and seek private assessments. There aren’t the resources in the public system to re-diagnose these kids. So the fear of losing services is unwarranted, at least in Canada. I know people in the U.S. are worried about losing insured services but I have to ask the same question: Who is going to reassess all of these kids?

BLOOM: What about findings that are reported to show that only 45 percent of the highest-functioning kids would qualify for the new diagnosis?

Dr. Jessica Brian: That’s just one piece of preliminary evidence that hasn’t been published yet. A study published in January found that 12 percent of higher-functioning individuals might be missed by the new criteria, but if only one criterion was removed, almost all kids would be included. It’s important to note that we have to find ways to provide necessary services to kids who have needs even if they don’t meet full criteria for a diagnosis. Some kids will still need communication or social or behavioural supports even if they don’t get a diagnosis of ASD. We need to keep this in mind and keep pushing for needs-based access to services.

BLOOM: Is the broader definition positive in that children aren’t as pigeon-holed when they’re first diagnosed?

Dr. Jessica Brian: Yes, we can say that they will most likely stay on the autism spectrum, but developmental changes are very possible.

BLOOM: I guess there will be some resistance to the broader definition?

Dr. Jessica Brian: According to the proposed changes, the term Asperger won’t be used in the DSM. But I suspect there will be a strong group of people with Asperger’s who self-identify that way and I would expect that that term will remain alive among individuals who have those characteristics. There is a culture of Asperger’s that we won’t lose anytime soon. It’s a badge of honour, a characteristic many people are proud of.

BLOOM: It doesn’t sound like the change in definition will have a significant impact on our work here?

Dr. Jessica Brian: We’ve been using the term ASD for many years even though it’s not in the DSM4. And the reason we’ve been using it in research and clinical settings is because we’re aware that those sub-distinctions aren’t always that helpful or meaningful.

Vote for Busy Bodies!

2012-01-31T14:07:00.003-05:00

A seven-week program designed to get young kids with disabilities hooked on fun, physical activities is vying for a $50,000 grant from the Maple Leaf Sports & Entertainment Team Up Foundation Fund.

You can vote for Holland Bloorview's Busy Bodies program today and everyday until Feb. 20 (click on View the candidates, then click on Holland Bloorview Kids Rehabilitation Hospital Foundation).

Research shows that children with physical disabilities take part less in social, recreation and physical activities than peers.

Busy Bodies gets kids with disabilities aged seven to 12 out once a week to try creative dance, yoga, sledge hockey and wheelchair basketball.

Read about the difference the program made in Cassidy's life (above).

Then vote!

CHOP reviewing transplant eligibility of Amelia Rivera

2012-01-31T09:13:00.003-05:00

The parents of a girl who was allegedly denied a kidney transplant at the Children's Hospital of Philadelphia because of her intellectual disability say they've won a review of her case.

In this article in the Philadelphia Inquirer, the Riveras say they met with hospital staff on Friday "after which they were given instructions on how to proceed with a possible transplant -- including how to have family members tested as potential donors."

Chrissy Rivera said her daughter Amelia's chart initially had the words 'mental retardation' listed as a reason not to do the transplant and that those words have been removed. However, Amelia's case need to be reviewed to see if she is a good medical candidate.

Half of Canadian kids with disabilities lack friends

2012-01-30T16:26:00.001-05:00

Update: I just read the report and in fact over half the children had either no friends or only one close relationship with a friend (a little different than how it was reported).

A study that looked at the state of inclusion for kids with disabilities in Canada is disturbing and, I'm afraid, rings true in my experience.

André Picard in the Globe hits the mark in his piece about Anne Snowdon's study today, saying:

"In Canada, we talk a good game about integration, about breaking down barriers to allow the inclusion of people with physical and social disabilities in every aspect of daily life. But reality is more stark and harsh."

Some of the stats: 53 per cent of disabled kids have no friends or one close friend. Only 1 per cent spend an hour a day with friends.

"The problem is most serious for boys – who tend to have far more developmental disabilities and fewer social skills – and it gets worse with age," Picard writes. In childhood, efforts are made, but by the time kids hit age 10 or so, when cliques and social circles form outside of parental control, ostracization and isolation is near complete."

News on Amelia Rivera case

2012-01-26T09:18:00.001-05:00

The Wolfhirschhorn.org website has posted an update on the Amelia (Mia) Rivera case on its Facebook page. It includes the following. Of course this is one account -- that of Wolfhirschhorn.org representatives and the Riveras. It is good to hear that the family and hospital are actively working together. Louise

Over the weekend, a meeting took place between a number of the key leaders of the Children's Hospital of Philadelphia, the Riveras and wolfhirschhorn.org. The purpose of the meeting was to get an understanding of the chain of events that led to the Brick Walls posting. The meeting lasted a little over 90 minutes and the Riveras had an opportunity to tell their side of the story and the related concerns about Mia's needs and how CHOP handled the situation. CHOP agreed that the system is broken and that they are taking steps to fix the process. In addition to addressing Mia and the next steps with her transplant discussions, a few suggestions were made to CHOP about their involvement in a more macro-view of awareness around transplant rights for the disabled, and public and medical community education around the "mentally-retarded" phrase. CHOP agreed to follow up and communicate their action items by the end of this week.

Mia and the Riveras are planning a visit to CHOP in the near future to determine CHOP's role in her transplant and her ongoing medical care. Once that meeting takes place, we will issue a statement on the status of Mia, her care, and CHOP's involvement moving forward.

Teachers, students ostracize disabled children, study finds

2012-01-25T11:34:00.000-05:00

A 2011 Holland Bloorview study sheds light on how children with cerebral palsy are ostracized and bullied at school.

A qualitative study of 15 youth aged eight to 19 with cerebral palsy published in Disability and Rehabilitation found that teachers and peers intentionally shut out children with disabilities. Examples include teachers who turn off a communication device for most of the day – rendering a student silent – and a teacher who refuses to allow a child to have a bathroom communication button because it will disturb other children. As a result, the child, who is toilet trained, must wear diapers.

Sometimes accommodations weren’t made, researchers found. Other times accommodations themselves – such as having students write tests in a different room – set the children apart physically. “There were more and more accommodations I would need that would make me stick out more different,” says one participant.

Many students said they changed schools several times because of the negative attitudes of teachers. They also found teacher attitudes influenced how their peers treated them.

Unintentional peer exclusion included leaving children out of activities because they were perceived as ‘fragile,’ busy with an educational assistant or ‘too slow.’

Intentional exclusion focused on children’s differences and included name-calling and being ignored. “The kids act like I am invisible,” one participant said. Four of the participants had been physically bullied over a number of years, which included being kicked and pushed and physically injured.

Students reported that they didn’t want to tell anyone about the bullying because they were ashamed.

In a follow-up study published in Child: Care, Health and Development, Holland Bloorview researchers asked the same group of youth with cerebral palsy how their participation in school life could be improved.

The students identified three key strategies: learn how to explain your disability to peers and teachers, rather than trying to hide it; improve disability and bullying awareness so students are more comfortable seeking help; and develop friendships by engaging in extracurricular activities. Research shows that having a support network of friends protects children from being isolated and bullied.

'Keep coming back'

2012-01-24T09:59:00.000-05:00

I wrote about the loss of Jamie Burnett, a therapeutic clown at Holland Bloorview who died in December. I want to write about something he left with me.

I visited Jamie twice in hospital. The first time I felt somewhat awkward because of the magnitude of what he and his family were going through. I wanted to visit because I wanted him to know the difference he made in our family’s life when Ben was an inpatient. But I didn’t want to be intrusive or disturb.

Jamie was tired during our meeting. I quickly saw the difference between his overly exuberant clown character ‘Ricky’ and the flesh and blood Jamie who was living with a brain tumour.

The one thing he wanted to hear about was Holland Bloorview. He wanted news on innovative things we were doing and he wanted to know how everyone was. He commented on how much he liked the foundation’s new fundraising campaign: No Limits. And we learned that Ben was going to the same high school he once attended.

At the end, he said something that will always stay with me.

“Keep coming back!”

In those words he let me know that it was okay that I came and he appreciated it. But more than that, I felt he was conveying a message about life. ‘Keep coming back’ was about continuing to show up, even during the most painful times. It was about courage when you can’t change a situation. It was about keeping that clown magic moving – from clown to child and child to clown – not letting it drop. It was the words I imagine he and his partner Dr. Flap heard (or saw in the eyes of children) so many times: Keep coming back.

Dressing gown? Check

2012-01-23T09:43:00.000-05:00

It doesn't matter when your child does something -- if it's something he couldn't do previously, it's a thrill.

Ben can knot the belt on his dressing gown. He's never been able to tie his shoes because of fine-motor problems and we stopped trying to get him to years ago.

But recently I've been demanding that he not come out of his room at night till his dressing gown belt is tied. And he's finally got the hang of it.

It's one of many simple things we take for granted with kids who have regular hand control. In fact, we take so much for granted with typical kids that we miss the joy of many of the 'steps' along the way.

Tell us something new your child is doing or enjoying!

Film questions psychoanalytic approach to autism in France

2012-01-20T20:46:00.000-05:00

"The Wall" ("Le Mur") above, is a documentary that calls into question the French practice of treating children with autism with psychoanalysis. Read more in these pieces below.

From Le Monde (English translation): Autism: Psychoanalysis against the wall
Autism may well be France’s National Cause for 2012, but families living with autism remain helpless. Why? Because in France, psychoanalysts oppose behavioural methods which have already proven their effectiveness abroad. A retrograde position highlighted by Sophie Robert in her documentary “The Wall” (“Le Mur”), whose public release hangs on a court decision to be given on January 26.

A French film takes issue with the psychoanalytic approach to autism in the New York Times.

More media

2012-01-20T17:53:00.000-05:00

Teenager Carly Fleishman has written a book with her dad Arthur coming out in March called Carly's voice. It's about her breakthrough communicating with a computer after years growing up as a child with autism who couldn't speak. Carly uses WordQ, a word-prediction software developed at Holland Bloorview.

In case you missed this 20-20 piece on Carly, here it is above on Youtube. While I think there's much to be learned from Carly's experience, I think it's important to remember that many children who are non-verbal won't have similar breakthroughs. Sometimes I worry that stories like this will set a new expectation among the public and create even more pressure on parents.

New definition of autism will exclude many, study finds is a NY Times piece looking at proposed changes to narrow the criteria for autism by the American Psychiatric Association.

For those who missed CBC's Ontario Today interview with No Ordinary Boy author Jennifer Johannesen yesterday, you can listen to the podcast here and download it here .

And I LOVED this story about a 25-year-old man with Down syndrome who owns and operates a successful restaurant with the help of his family. Tim's Place: A dream followed

Happy weekend!

Marginalized group finds a voice in play

2012-01-20T12:34:00.001-05:00

Canadian playwright and director Judith Thompson is casting for a play that weaves together intimate stories from the lives of actors with Down syndrome.

It’s likely Thompson’s is the first play to give voice to this marginalized group: studies show that over 90 per cent of people given a prenatal diagnosis of Down syndrome opt to terminate.

The play – to run at Toronto’s 2012 Fringe Festival in July – will be a montage of monologues that explores what it means to have an extra 21st chromosome.

It will be modelled on two of Thompson’s earlier pieces – documentary dramas Body and Soul and The Grace Project: Sick. The former saw women share stories of life after age 45 in the form of a letter written to their bodies, while the latter gave voice to the experience of youth living with chronic illness or disability – people often stigmatized as being ‘sick.’

I interviewed Madeleine Greey, the writer producing Thompson’s new play, and mother to Krystal Nausbaum (photo above), an actress with Down syndrome who performed in The Grace Project: Sick and hopes to be part of Thompson’s new cast.

BLOOM: How would you describe the new play?

Madeleine Greey: It’ll be a series of monologues woven together about what it feels like to have Down syndrome. The play currently has no script and Judith has a way of coaching stories from people, then spinning her magic and writing and directing them into a cohesive form. This will not be a romanticized version of Down syndrome. We’re not getting anyone else’s interpretation of it. We’re going right to the source – people with Down syndrome. We want to face it head on. What does it feel like to have Down syndrome? What are the high points, what are the low points, what is it really like? Judith is not afraid of the difficult stuff and she’s interested in digging deep to find the joy and pain of every person’s experience.

BLOOM: Who can audition for the play?

Madeleine Greey: We’re looking for people with Down syndrome from teens to senior citizens. Verbal skills and previous acting experience aren’t prerequisites. Judith is well aware that lots of people with Down syndrome may be challenged in terms of verbalizing their story but she’s interested in having them express it in different ways – through dance, song, maybe even visual arts.

BLOOM: How demanding is the rehearsal schedule?

Madeleine Greey: We need people who can make what is a huge time commitment. In May and June we’ll be rehearsing Thursdays, Fridays and Saturdays from 11 a.m. to 5 p.m.

BLOOM: Why did you decide to produce the play?

Madeleine Greey: To be blunt, I’m always looking for opportunities for my daughter, that’s number one, and then secondly, my big motivation is to work with a person who is so creatively renowned. I have great trust in her. And thirdly, I believe that this play, which currently has no script, is going to reveal to audiences in Toronto what it means on all different levels to have Down syndrome. This is a group that doesn’t often have an opportunity to express itself.

BLOOM: What impact do you hope the play will have?

Madeleine Greey: I hope people walk out of this play saying ‘Wow, I had no idea.’ That’s my biggest hope. I feel you can go into theatre like this and meet people that you never would have encountered in your life, learn the most intimate things about them and be so deeply enriched by it.

Auditions for the play will be held Feb. 4 and 5 at Fringe Creation Lab at 720 Bathurst Street, 4th floor. Call Madeleine at 416-469-0852 or mado@madeleinegreey.com to reserve your spot. The audition will be like a group discussion where participants tell their stories.

Links to this and that

2012-01-19T12:01:00.002-05:00

Many of you follow Enjoying the Small Things, Kelle Hampton's blog that chronicles her life with four children, one who has Down syndrome, in words and images. Last year Kelle raised over $100,000 for the National Down Syndrome Society in the U.S. and she's at it again this year, edging closer to her goal of raising a total of $200,000. Check out her 2 for 2 campaign video above to honour daughter Nella's second birthday.

Have you seen Noah's minute? A dad video-blogs about life with an adorable toddler with Down syndrome at Noah's Dad.

This is an interesting piece in the Globe and Mail today: Why care less about the disabled fetus?

Here's a blog about acceptance by the mom of a child with intellectual disability: Realistic optimism.

A communications primer on the Amelia Rivera case

2012-01-18T15:13:00.000-05:00

Update: The family has agreed to meet with hospital officials next week.

Acknowledgement. Empathy. Action.

It’s a well-known prescription for corporate crisis communications following an error.

Since we weren’t in the Children’s Hospital of Philadelphia room when a doctor told parents whether their child was eligible for a kidney transplant, we don’t know what transpired.

We do know that two parents left that meeting with the understanding that their daughter, Amelia Rivera, was being denied a life-saving kidney transplant because she had mental retardation and what was perceived as a 'diminished' quality of life.

At a minimum, the hospital needs to acknowledge to the family that a terrible miscommunication took place and meet with the family until they understand clearly the hospital’s position.

A 2011 white paper by the Institute for Healthcare Improvement notes that the number one priority for outreach following serious adverse events is the patient and family. While this event didn’t cause the patient harm, I would argue that it harmed the parents. Certainly mainstream media coverage has turned the event into a serious one for the reputation of the hospital.

“Who is the organizational 24/7 contact person for the patient and family?” is first on IHI's adverse event checklist (you have to register at IHI to access this).

According to Sunday Stilwell, the blogger who organized the change.org petition that over 27,000 have signed in favour of Amelia receiving a transplant, contact with the hospital has been minimal.

Stilwell says the family was contacted by the hospital on Sunday with a request for a meeting to discuss Amelia’s case, but the hospital hasn’t followed up that call to book the appointment.

In the meantime, CHOP has posted about its transplant criteria on its Facebook page:

CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status.

What I took from this statement was that cognitive status is a factor in the evaluation process, but not the only factor.

Later we read:

CHOP does not disqualify potential transplant candidates on the basis of intellectual abilities. We have transplanted many children with a wide range of disabilities…

At this point, we still can’t ascertain how cognitive status fits into the evaluation process. What are all of the factors considered, and how much would developmental delay weight a child against receiving a transplant?

In the same Facebook message: We are also taking action to review all existing policies to make sure that they reflect the core values we live by, including our deep commitment to not discriminate in any way.

It’s good to hear that they are reviewing their policies to make sure they’re not discriminatory.

If in fact what the parents took from their meeting is incorrect, the hospital needs to express empathy to the family for the pain they experienced based on this miscommunication. According to one news report, the family did receive an apology by phone on Sunday.

Then the hospital needs to work with the family to come up with a clear plan to prevent future misunderstandings when this kind of transplant information is conveyed.

If there was no miscommunication, the hospital has different issues on its hands.

Either way, the incident has got people talking about the ethics of transplant eligibility for people with intellectual disability, and that is obviously a good thing.

Dr. Art Caplan, a bioethicist writing for MSNBC online sums it up beautifully: …"Children with intellectual disabilities do not appear on transplant waiting lists with the frequency that should be expected…There are reasons why anyone with an intellectual or physical disability might not be considered a good candidate for a transplant. But those reasons, to be ethical, have to be linked to the chance of making the transplant succeed. Otherwise they are not reasons, they are only biases."

'You took the decision away from us'

2012-01-18T10:34:00.000-05:00

Tim and Gina Gort of Grand Rapids, Mich. have three children. Gwen, 9 (photo bottom), and Eliza, 1, have cerebral palsy, while Violet, 3 (photo top), does not. Tim commented on our blog about medical errors. His family has experienced two crushing mistakes. The first occurred when Eliza was given a blood exchange transfusion to treat jaundice as a newborn in February 2010 and sustained a brain injury because of air in the line. The second error occurred just 10 months later, when Gwen was accidentally given five times the dose of diazepam (valium) when in the hospital for a spinal-fusion surgery, which complicated her breathing problems and resulted in the need for a tracheostomy. I asked Tim about the impact of this second error and how hospital staff responded.

BLOOM: What error occurred in Gwen's care?

Tim Gort: It was an admitting error. When she was admitted for her spinal-fusion surgery, they asked what drugs she got at home. We told them she got valium (to relieve her high tone) but they input the wrong concentration. They thought they were giving her what she gets at home but they were giving her an adult dose. After her surgery she was having respiratory problems. They did a sleep study and said she was obstructing equally during the day and night and the only thing to fix it was a tracheostomy. So they put in the trach and the next day I was speaking with her physical therapist who asked about what she took for tone management. I told her Gwen's home dose of valium and then double-checked with our nurse. The nurse told me 'No, she's on five times that here.' I asked the nurse why and her eyes got large and she said: 'Oh my gosh I'm going to check into this.' But I think because we were in the intensive care unit it wasn't seen as a big deal that a kid would be getting a large dose. No one came and said anything. The next morning I confronted the doctor and residents on rounds. I said 'I question the results of the sleep study now because of this.' The doctor said: 'I agree. I would question those study results too.' There was an affirmation of what I was pinpointing, but no accountability for what happened.

BLOOM: What did you do?

Tim Gort: I called the risk management person and tried to set up a meeting to find out what happened. The odd thing was that this person asked me 'Who do you want to be there?' It was like it was my responsibility, as a parent, to figure out who needs to be there. At the first meeting they said there would be an investigation and we would have a meeting in five to six weeks to discover what had been learned.

BLOOM: Was there an apology for the medication error?

Tim Gort: Yes, in that first meeting there was. And we received another apology after they went through their discovery process. The head of safety apologized to us and said 'I'm really sorry for what your family's gone through.' But they never admitted that the valium dosage had caused the respiratory problems that led to the trach. We said in our very first meeting isn't it possible that the valium dosage, combined with the spinal-fusion surgery, pushed her over the edge? And the ENT said 'Yes, that is completely feasible.' But none of the facts were ever clear. We went into this meeting and professionals were still scribbling down their notes. I asked the manager of patient safety to send me a list of the things they would work on to prevent that error from happening again. They shared six things and I can tell you that one was in place when we were back at the hospital for a procedure with Eliza in January. That was a verification of home medications before (and after) she was even admitted.

BLOOM: What was the impact of the error on Gwen's and your family's life?

Tim Gort: It was dramatic. It created a lot of distrust in medicine. The caregiving part of it was the most stressful – the trach comes with so much responsibility and we had to go through seven days of intense training where they put the fear of God in us if the trach ever came out. It also added another layer of pressure on our family because when Gwen came home with the trach, she qualified for nursing care. That put an additional person in our house. Even though that's not supposed to be stressful, it was. We didn't sleep well for a long time. Not to mention Gwen's sleep cycle, which was screwed up because she was in the hospital for 40 days.

BLOOM: Do you still use that hospital?

Tim Gort: We went there for one more procedure with Eliza. But the people there figured out who we were – that we were the parents of both of these children who had been harmed by errors there. They were nervous and we were nervous. It almost created a setting that was prone for more errors. After that we decided we are not going back there. Now we drive to a children's hospital about two hours away.

BLOOM: What did the hospital do right in your case?

Tim Gort: Not much. I think the silence is deafening. There's an attitude of 'the error happened, let's not talk about it and move on.' The hospital did a couple of things right. There was a gap in nursing care when we went home, so they paid for Gwen's nursing for two weeks. And they paid for a video monitor because of how far Gwen's room was from our room. Because we could no longer hear her cry, we needed to be able to see if she was in discomfort. But those things were kind of obligatory. A lot of the stuff was lip service. They also e-mailed us the things they were working on to prevent this from happening again. We did get asked by the manager of patient safety if we would share our story with residents and interns, but it didn't feel sincere. It felt too close to the incident. If they had asked us further down the road, after giving us full answers and treating us respectfully, it might have been different.

BLOOM: What would you want the hospital to do in the future?

Tim Gort: I don't have a magic answer to that. Open, consistent communication unfiltered by attorneys is what families want. Sitting down not just once but multiple times. Having the president and CEO, who is ultimately responsible for something like this, at the table, because the culture will never change if it's not top down. Having the president or someone in senior admin send me a letter or call me, saying 'You know what, this is unacceptable and we're going to fix this.' I think medical error is often not addressed when the patient doesn't die. For science, the ultimate failure is to have the patient die. But if the patient doesn't die, there isn't the same view. In Gwen's case it was like 'Oh, she's got a trach, she's breathing, so what? She was going to need it eventually anyway.' What the doctors don't see is how severely affected the person's quality of life is. What my wife Gina said was: 'We're not saying she's not a candidate in the future for a trach. But you robbed us of who knows how many years without it. You took the decision away from us.' I feel like there was a point in time where if we had been embraced and coddled and massaged a little, it could have resulted in a huge benefit for the hospital's learning – to learn from caregivers and to realize what it's like to be on the other side of this. They really missed out on an opportunity to educate staff.

BLOOM: What advice would you give other parents who have experienced a medical error?

Tim Gort: I would suggest having a third party to help you make sense of the situation and navigate the hospital. The challenge I found is that advocates work either for the institution or the insurance company. No one will really pay for a third-party to come in, but you could ask a friend or family member to be present. You need to be well informed and demand transparency. The challenge is that we as humans don't want to accept that things are random. There is a grieving process because as a parent you make the best informed decision you can, because you want the best outcome, and I feel confident that the medical professionals want the best outcome. And when that outcome is something no one expects, it's hard to accept. I've gone down that road of asking ‘What could we have done differently?’ and there's not a thing we could have done to change that outcome. Once you've accepted what happened, you have to figure out how you can create change to prevent it from happening again. We realized quickly that in our case we weren't going to change the institution because the people weren't open to us helping them change. We had a social worker who recommended we turn them into the patient safety board but that wasn't something we could do at that time. We were very vulnerable.

BLOOM: How is Gwen today?

Tim Gort: Her trach came out before Christmas and her life is much better. We don't believe she ever really needed it. It was definitely put in under what was created to be an emergency situation, which never really was. Over the last year we've been working toward getting rid of it – doing trials when we capped it. We worked with an ENT who said she should be able to breathe without it. Then one morning on the bus Gwen pulled her trach out and the nurse didn't see it and by the time they got to school, the stoma had closed up. So Gwen basically took matters into her own hands.

BLOOM: What would have happened if you hadn't asked questions?

Tim Gort: We never would have known. We did learn that the pharmacy intern had questioned the dose and brought it up with whoever his or her superior was, but that person didn't follow up. The hospital was switching over to electronic note taking. They had a team working on a system to double check the electronic notes with a paper trail, but they hadn't implemented it yet. They knew that there were holes in transferring over to this electronic system prior to our error.

A Dad's View is an organization Tim created to better educate medical professionals and students about patient safety and to advocate for families of children with special needs. He is the author of The Gort Family blog and a healthcare advice columnist for the Grand Rapids Press.

Join the conversation on CBC Radio

2012-01-17T10:35:00.000-05:00

BLOOM contributor Jennifer Johannesen is being interviewed on CBC Radio One's Ontario Today this Thursday, Jan. 19 about her book No Ordinary Boy and experiences raising Owen (above), a boy with multiple disabilities who died at age 12 in 2010. One of the CBC call-in themes? "The pressures placed on families (created by ourselves and others) to continue working on ‘improving’ our children and moving towards sometimes impossible goals," writes Jennifer on her blog YES or NO.

Calls from North America will be taken this Thursday between 12 noon and 1 p.m. at
1-888-817-8995.

The show can be heard on FM 99.1.

Jennifer is kicking off our BLOOM speaker series with a talk on Wed. February 15, 7-9 p.m. in the Family Resource Centre at Holland Bloorview. It's called Redefining success: Decide for yourself what really matters. RSVP to ndyke@hollandbloorview.ca.

The transplant debate

2012-01-16T20:26:00.000-05:00

FINALLY -- major news outlets have written about whether a New Jersey child who has a genetic condition and intellectual disability should be denied a kidney transplant. The blogosphere has been abuzz with opinions by parents of children with special needs over the last couple of days and over 17,000 people have signed a petition asking the Children's Hospital of Philadelphia (CHOP) to reverse its decision.

Today in the Huffington Post, Parentlode blogger Lisa Belkin argues that Amelia Rivera (left) should not be eligible for a transplant. And in a companion piece, Susan Senator, author of Making Peace with Autism, argues that she should.

Check out this interview with the family on NBC.

You can read Amelia's mother's account of a conversation she had with a nephrology doctor at CHOP about Amelia's eligibility. And you can read a number of responses CHOP has posted about its transplant criteria on its Facebook page.

You may also be interested to read these recent BLOOM posts about an ethics conference at the Montreal Children's Hospital which looked at how cultural devaluing of children with disabilities plays out in their care: The disability paradox; Costs, quality-of-life ratings puts complex kids' care at risk; Burden of kids not whole picture, ethicist says; and A fate worse than death.

Too many balls

2012-01-16T11:43:00.000-05:00

I was driving home with a foggy head Friday when I saw 3:30 on the dashboard and my brain made the connection: Ben had a physio appointment at 3:30 to check out pain he's had in his right knee. The appointment required me to get him to Holland Bloorview from school instead of home. But I had completely forgotten to call the cab and now Ben and I were both minutes from home.

Just hours earlier, as I stood in the elevator at work, seeing a colleague had jogged my memory of this appointment and I thanked said colleague.

But somehow in the course of the ensuing day the appointment file in my brain went missing.

I often tell D'Arcy I can't keep up with the pace. I'm juggling too many 'balls' and one of them is bound to fall.

I began Saturday doing what I typically do on Saturday: I make a list. My list included things like: Fill out Ontario Disability Support Program application online; set up appointment to look at My Voice device with Ben; get Ben to do Kumon and homework and me to exercise; write thank yous; go grocery shopping; go to mall to buy Ben some track pants and take to cleaners to be shortened; call Motion Specialties back about the bath bench; e-mail school board about the letter that arrived stating Ben hadn't been admitted to receive OT services through CCAC because the wrong form was sent (yes, someone put a stamp on a letter and snail-mailed me this information!); go to Cherry Beach; read Ben a chapter of Harry Potter; get Ben to use new WordQ software we have on iPad; e-mail teacher about his progress in Kumon.

I was so exhausted after reading my list that I had to turn on the fireplace and collapse under a throw on our couch for a couple of hours (and hope everything would go away).

There are items that have dropped off the to-do list in the last few months. Not because they've been accomplished, but because I can't even 'go there' at the moment. Things like a four-hour meeting to find out if Ben qualifies for developmental services as an adult; picking up his new hearing aid which had to be fixed in a busy part of town where you can't park (he's wearing his old pair); getting after an agency that was supposed to provide us with a behaviour consult; and coming up with co-op work ideas for next year.

I'm sure everyone reading this can relate with their own list of 'to-dos,' many of which are largely wishful thinking. "If I just write it down, somehow I'll get one step closer to it," I tell myself.

When Ben drives away in the cab in the morning I feel like D'Arcy and I have run a mini-marathon. Meds? Check. Leg in brace and stretched? Check. Glasses cleaned? Check. Hearing aids in? Check. Lunch? Check. Sticky-notes to communicate with educational assistant in agenda? Check. Any number of supplies Ben may need at school? Check.

The one day it snowed last week we realized as Ben was about to go out the door that his boots had been sitting on our porch and were full of wet snow. No check on the boots. Hope the shoes don't get wet.

Silent Sunday

2012-01-15T12:08:00.003-05:00

Cognitive disability disqualifies child from transplant

2012-01-14T18:16:00.000-05:00

Donna Thomson, author of Four Walls of My Freedom, posted today about a New Jersey family (above) whose daughter Amelia is being denied a kidney transplant because she has 'mental retardation.'

Amelia has Wolf-Hirschhorn Syndrome, a genetic condition associated with intellectual disability.

The story was posted by her mother on this site run by parents of children with the syndrome. Amelia (above centre) needs a kidney transplant. Here is part of the conversation her mother Chrissy reports between herself and the Nephrology doctor at the Children's Hospital of Philadelphia:

"So you mean to tell me that as a doctor, you are not recommending the transplant, and when her kidneys fail in six months to a year, you want me to let her die because she is mentally retarded? There is no other medical reason for her not to have this transplant other than she is mentally retarded?"

"Yes, this is hard for me you know."

My eyes burn through my soul as if I could set him on fire right there. "Ok, so now what? This is not acceptable to me. Who do I talk to next?"

"I will take this back to the team. We meet once a month. I will tell them I do not recommend Amelia for a transplant because she is mentally retarded and then we will vote."

"And then who do I see?"

"Well, you can then take it to the ethics committee but as a team we have the final say. Feel free to go somewhere else. But it won't be done here."

The Children's Hospital of Philadelphia posted this message on its Facebook page yesterday: CHOP does not have any criteria which exclude patients from being considered for transplant solely on the basis of their cognitive status.

I think the operative word here is 'solely.' The hospital has not said it doesn't consider intelligence in its evaluation for eligibility, only that IQ is not the sole factor.

I did a quick google search and found this study which showed that kidney transplants were just as successful in people with intellectual disability as those without, in terms of survival rates after one and three years.

I also found this paper about an area in Northern Italy that denies any organ transplants to people with intellectual disability. People with intellectual disability are simply not eligible for transplants there.

BLOOM has posted a number of pieces recently about how cultural devaluing of people with disabilities plays into decisions about their care, including whether care is withdrawn: The disability paradox; Costs, quality-of-life ratings puts complex kids' care at risk; Burden of kids not whole picture, ethicist says; and A fate worse than death.

We've also posted about protocols that would see children with certain intellectual and physical disabilities denied intensive care treatment during a pandemic.

Here is a video about Amelia.

I tried to post a comment on the Wolf-Hirschhorn website, but the story has gone viral and I believe is getting so many hits that the comments function seems to have frozen.

So let us know what you think about this here! Louise

Raising a child who wasn't supposed to survive

2012-01-13T13:33:00.000-05:00

I met Esmirna Lopez-Cugurs (above) and daughter Amanda at the Montreal Children's Hospital. Here Esmirna talks about Amanda, 4, who has Trisomy 18 and wasn't expected to survive. I think Amanda found the topic rather boring and was encouraging us to include her! The Lopez-Cugurs family attended an ethics workshop about how cultural devaluing of children with disabilities can play out in their care. Amanda's dad Eric spoke about his family's experiences on a parent panel. Thank you Esmirna and Amanda!

Mr. Kumon

2012-01-13T11:27:00.001-05:00

We've had two lovely nights of Kumon where Ben has really enjoyed it and is showing that he's memorized adding 2 to most numbers up to 15 -- and even goes back to correct mistakes.

Remember, prior to the summer, Ben had never been able to write and he never seemed to 'get' math. Part of the problem was that he couldn't 'play' with numbers the way other kids do by counting out loud or writing them down. And we never had solid signs for the numbers either, because he had trouble manipulating his fingers to make them. So he never had a good mental awareness of numbers.

When we first moved in Kumon from adding 1 to adding 2, sometimes he would default back and simply start adding 1 to every number (like he just wanted to get this work over with and he'd start racing through and not paying attention). He had to be reminded to add one, and then go to the next number for two. We sometimes used a number chart and he would count along two spaces with his finger while I counted out loud: "One, two." I don't think he's ever laid down counting in his mind (so that he could say it in his mind while he was moving his finger).

I figured it was going to be a big deal to learn sums for the other numbers. But when one of his books included + 3 problems he surprised me by getting the correct answers for some -- without looking at the number chart. I just about lifted him off the floor with a high five!

I realize this won't proceed the way it does with typical kids, whose brains are wired to leap from adding to subtracting to multiplying and so on. And sometimes I wonder if having him learn simple math isn't a good use of time in terms of giving him something he can use functionally in life. But when I see the sense of accomplishment he gets chugging along through his Kumon books -- and being one of the kids who sits at our dining room table working -- it makes me happy.

Another neat thing I've noticed is that Ben has begun writing a stylized 'a.' Instead of writing an 'a' as a circle with a stick on the right side, he writes it as you see it in this font: 'a.' He still has trouble writing and writes larger than usual and it's hard to read his writing. So it's not like his writing is perfect by any means. But I find it intriguing that this kid who couldn't write a few months ago has begun writing a fancy 'a.'

Ben was thrilled yesterday because his Halloween Town High movie arrived in the mail. The other night he found it on Amazon and put it in the cart and asked me if we could get it. Since then he's been asking every day when it's coming. Ben had an early closing day at school and was at home with D'Arcy when the movie arrived. Apparently all afternoon he was signing "Thank you Mom for getting the movie."

Perfection

2012-01-12T13:31:00.000-05:00

My stomach tightened when I saw the 'sell' for this story about genetic engineering in last weekend's Globe and Mail.

Invitro-fertilization and genetic testing are increasingly used by couples... capable of conceiving naturally to screen out not just catastrophic diseases but other 'undesirable' conditions.

What are those undesirable conditions? One company that screens genes is considering adding the skin condition psoriasis to the list, the article says. The 'undesirables' also include not health conditions, but physical features like short height that don't fit with our North American concept of beauty. We hear about a fertility clinic in Mexico where Canadian and other couples go for IVF -- not because they can't conceive, but because they want to select whether it's a boy or a girl (a 'no-no' in their home country). We hear that on the horizon are DNA microchips that analyze genes that influence height, intelligence, hair, skin and eye colour and athletic ability.

The piece refers to a 2009 survey of 999 people that found that most supported prenatal screening that would result in the abortion of fetuses with serious diseases, along with mental retardation (75 per cent) and blindness (56 per cent). At least 10 per cent of respondents to this New York University School of Medicine survey also favoured improving height and 13 per cent considered it acceptable to screen for intelligence.

The piece begins with this sentence: Humanity has long dreamed of perfection, striving to be faster, stronger and brighter.

Is that your definition of perfection?

To me it sounds a bit like a robot.

What about striving to be deeper, gentler, less judgmental, more kind?

The article notes that "We now have the potential to banish the genes that kill us..."

Isn't that a bit of an overstatement? Isn't the human condition still a fatal one?

Ben update

2012-01-10T10:13:00.000-05:00

A quick update on Ben. He's back at school and happy to go. He's able to sit for 30 minutes or more to do his Kumon, which is quite remarkable because in the past it was hard to keep his focus on anything for more than about five minutes. It's still hard for him to write but he does it. He's still early on in the Kumon reading program but he got 90 per cent on his test at the Kumon centre before Christmas.

We started him on math, which has always been a challenge. He's able to do addition adding '1' and is learning to add '2' (some of these sums he's memorized). Because he doesn't speak and never wrote, he's never been able to 'play' with numbers the way other kids do. So I'm happy he's just becoming more aware of numbers. It is hard work for him and he has to 'think' about it whereas other kids seem wired to learn their numbers and basic math skills automatically (they can keep all kinds of numbers in their mind at once and manipulate them easily).

Ben gave some really cool ceramic pieces as Christmas presents this year. He made them in his ceramics class at school. I know he's not crazy about the class due to his sensory issues but I loved the aqua vase I got with fish and bubbles on it.

We got a bath bench so that I don't have to lift Ben in and out of our claw foot tub. He can sit on the bench, which is placed level with the edge of the bath, swing his legs over, and he's in. I was secretly thrilled when he got out and put on his pajamas by himself (even if he did leave about five towels on the floor).

I had a call yesterday from an adult hospital that will see Ben for dental when he turns 18 in March. A scary thought. Most of the services we've received under one roof here at Holland Bloorview will now be accessed at multiple adult hospitals where staff won't have the same understanding of youth with childhood disabilities.

Ben had an episode of bad pain in his right knee that kept him up for hours one night last week and left him limping for the next couple of days. This is on the knee that wasn't operated on last year. He has huge bony growths around both knees and I assume one was pushing against a nerve or in some other way bothering him. We haven't had that kind of pain since before his surgery more than 18 months ago and it was a frightening reminder of the constant pain he'd been in before. All seems well now so hopefully it was just a blip. I don't like to think about possible surgeries he may need in the future -- and in particular having them done in an adult hospital.

Ben is still in love with the cowgirl Jessie from Toy Story. I feel pressure to 'push' him into more age-appropriate interests, but then I think: "Why shouldn't he enjoy what he enjoys?" But I can see how it sets him apart from other kids. For example, at Christmas he was disappointed when his younger cousins weren't interested in watching Halloween Town 2. I had encouraged him to ask them if they'd like to watch it and he had his heart set on it. But everyone wanted to see Harry Potter.

I'm reading him the third book in the Harry Potter series and he loves that. In fact, at a recent scary part involving a dementor he put his hands over his eyes, then signed: "I can't look!"

He did have a fabulous dinner at his aunt and uncle's house before Christmas. He chose to rent the movie Cowboys and Aliens for that night.

I am grateful that Ben is in school during the day and I don't like to think about how we'll create meaningful days after age 21.

How are your kids doing??? Louise

The disability paradox

2012-01-09T09:31:00.001-05:00

Satisfaction with life is subjective and hard to measure in another person, says clinical ethicist Lori Seller at The Montreal Children's Hospital. That's why people with disabilities rate their happiness with life as high, while doctors projecting quality of life with these conditions assume it would be low. Lori looks at research that shows that the way a health problem or disability is framed influences how a family makes treatment choices for a child. To watch in full screen go to Youtube. Lori spoke at a grand rounds on ethics in the care of disabled children at Montreal Children's in December. Thanks Lori! Louise

A tribute to the clown who let us dream

2012-01-06T12:26:00.001-05:00

I was gripped with fear about my son’s pain and challenging rehab. Would he ever walk again?

Then out of nowhere they’d appear on the hospital floor and launch into a magnetic Star Wars scene: Dr. Flap would be C-3PO and Ricky would be Darth Vader.

My mind would pop out of its prison, my stomach would fill with a slow, grounding breath, and my face would spread into a grin.

Ben – immobilized in a body cast – would giggle.

They were light and joy and laughter in the midst of pain and fear and despair. They could make you forget – they could make anything possible, for they were Holland Bloorview’s therapeutic clowns.

And one of them is no longer with us.

Jamie Burnett (photo right) – who many of you knew as Ricky – died on December 18 at age 33 after a long journey with a brain tumour.

I used to stand transfixed watching Ricky and Dr. Flap (Helen Donnelly, photo centre). No matter which hospital room we were in or whether the child could speak or move, the duo would create a kind of magic that bounced like a ball between the clowns and the child and the child and the clowns. Sometimes the magic moved back and forth through blinks of the eyes alone, sometimes through silly body movements and sounds. Sometimes it was a child conducting the taps of drum brushes on a wheelchair tray or commanding the clowns to perform outlandish antics. Sometimes it was an elaborate story the child told and the clowns acted out. Other times it was a dance to the strums of a red ukelele.

“When children come in here they lose all power,” Jamie told me in an interview two years ago. “They lose control of their bodies due to some illness…and they have doctors telling them what to do, and parents telling them what to do…

“We allow them to come to a space of complete freedom and imagination…and go wherever they would like to go and that, I think, is so essential, not just in terms of being a human being, but in terms of becoming a healthier person. I am always amazed at the courage they show and I am always amazed at the beauty of their spirits, and their ability to move through with such humour and grace…"

Jamie’s wife Rebecca has shared these details about a Celebration of Life for Jamie: It will be held on Sunday, January 15 at 918 Bathurst in the Great Hall. A formal service will begin at 4 p.m. Children are welcome.

An informal party will take place from 5:30-9 p.m. During this part of the evening, we invite all forms of creative expression. If anyone would like to pay tribute to Jamie, please let us know.

If you plan to attend, please RSVP to Karl Gad at kayayarel@gmail.com. The venue is not fully accessible so please make any special needs known in advance.

In Jamie's memory his family invites donations to the Therapeutic Clown Program at Holland Bloorview by visiting hollandbloorviewfoundation.ca or by calling 416-424-3809.

This is how I do it

2012-01-05T10:36:00.000-05:00

Check out these five guest posts on Ellen Seidman's Love That Max blog.

Ellen interviews five mothers to find out 'how' they parent children with a variety of disabilities. Great practical advice here! Louise

Katrina of Fickle Feline, mom to Max, 5, with autism

Sunday of Extreme Parenthood, mom to two boys with autism

Dana of Uncommon Sense, mom to a daughter with an undiagnosed genetic condition

Debbie of Finding Normal, mom to a daughter with trisomy 9

Andi of Bringing the Sunshine, mom to a daughter with CP and a son with Down syndrome

After medical error: Care for the caregiver

2012-01-03T17:07:00.001-05:00

Last year at a conference on family-centred care, I heard about the emotional anguish nurses and doctors experience after making unintentional medical errors that cause harm.

“How do people come back from that?” I asked colleagues of mine. “Some don’t,” I was told. “They leave the profession.” Others were so full of guilt, despair and self-doubt that they couldn't sleep for months. Some experienced post-traumatic stress disorder.

Then I read about Kimberly Hiatt, a seasoned critical-care nurse at Seattle Children’s Hospital who accidentally gave a fragile baby 10 times too much medication in 2010. The baby died five days later – though it was unclear if the error had caused her death. It was Hiatt’s first serious medical mistake in an exemplary 24-year career. She was escorted from the building, fired, and seven months later, devastated, according to her family, took her life.

While progress has been made in investigating adverse events to make healthcare safer, and in supporting the patient and family, little attention has been paid to the experiences of frontline clinicians.

“Health-care workers are often impacted by medical errors as ‘second victims,’ and experience many of the same emotions and/or feelings” as the patient and family members, write the authors of an editorial in the January 2 issue of the British Medical Journal on Quality and Safety.

Yet supporting staff hasn’t been the focus of how hospitals respond to errors.

"Everyone who'd been involved left the hospital," recounts Dr. Gary Brandeland, a family doctor writing in a 2006 Modern Medicine blog about his patient who died during a C-section because of a fatal anesthesia error. "I looked out the window, and saw nurses who had been in the OR literally running to their cars to escape the horror of what had just happened. The senior OB who had performed the C-section disappeared. I was just the first assistant...Not surprisingly, no one from the hospital administration, the nursing staff, or the medical staff including the operating OB, wanted to join me" in telling the family of the accident. "I was told by several people, 'You're the family doctor, it's best if you speak to them.' I walked in alone."

In a 2011 study published in the Polish Archives of Internal Medicine, 60 per cent of 350 health-care workers at Johns Hopkins Medicine could recall an adverse event in which they identified themselves as a ‘second victim,’ and more than half experienced anxiety, depression and concern about their ability to do their job.

"Most harm from medical errors results from bad systems, not bad people," write the authors of a 2011 white paper on Respectful Management of Serious Clinical Adverse Events by the Institute for Healthcare Improvement (you need to register at IHI to view this document). "Many health-care organizations have learned that, in the aftermath of a clinical adverse event, they could fire all the staff involved and it would do nothing to improve safety or prevent a similar event from happening again."

“We typically want to find the broken parts, fix them, remove them, and make sure that they can’t contribute to failure again,” writes Dr. Sidney W.A. Dekker in an April 2010 article in The Joint Commission Journal on Quality and Patient Safety. “However, complexity theory says that if we really want to understand failure in complex systems, we need to ‘go up and out’ to explore how things are related to each other and how they are connected to, configured in, and constrained by larger systems of pressures, constraints and expectations.”

For example, in a fatal medication error in 2006 that saw Madison, Wisconsin nurse Julie Thao fired and charged with a criminal offence, a recommendation from the root cause analysis was that the hospital reduce the risk of staff fatigue by setting policies that limit maximum work hours. Thao had worked two consecutive eight-hour shifts the day before the error, finishing at 12:30 p.m., then slept in the hospital before coming on duty again in the morning. “Systems problems include an overdependence on people being perfect without systems that support their humanness," says Jim Conway, a senior fellow at the Institute for Healthcare Improvement and an author on its adverse events white paper.

Paul Levy, former president and CEO of Beth Israel Deaconess Medical Center in Boston wrote an interesting blog about the reaction of families to medical errors: Do patients want to punish? “The literature on the topic of disclosure and apology suggests that patients and families are not interested in having the doctor or nurse be punished when a medical error occurs, if (and this is an important if), the clinician makes clear that he or she is clearly regretful about the error, is empathetic with the patient, and if the clinician and hospital show that they plan to learn from the error to help avoid repeats with other patients."

I asked Conway what parents of children with disabilities and chronic health problems need to consider about medical error. “The first thing is if they see something in their child’s care that doesn’t look right, say something,” Conway said. “Ask questions. For family members who sit on advisory committees that examine medical errors, focus not on ‘Who did it?’ but ‘What happened?,’ ‘Why did it happen?’ and ‘What’s being done to prevent it from happening again?’"

The IHI white paper says immediacy, transparency, apology and accountability are the hallmarks of a strong crisis response to medical error, and should focus, in this order, on the patient and family, frontline staff and the hospital.

An evidence-based Care of the Caregiver safe practice released in 2009 by the National Quality Forum includes five rights of caregivers following unintentional errors. They include: treatment that is just; respect; understanding and compassion, including a formal process led by an administrator to invite co-workers to express understanding and compassion to those directly and indirectly involved; supportive care – where staff are considered as patients requiring immediate and ongoing care; and transparency, where staff participate in the investigation and analysis of incidents.

As noted in an article by Dr. Charles Denham in the April 2010 Joint Commission Journal on Quality and Patient Safety: “When (Wisconsin nurse Thao), still an employee, went to the hospital pastoral care service, her co-workers were invited to come and console her. Instead, she and her co-workers reported that their nursing supervisor came to the department and ordered her physically off the property, forcing her nursing colleagues to console her, sobbing and exposed, outside on a sidewalk. Was this respect and compassion – or cruelty?”

The top five supports for ‘second victims’ of medical errors identified in the Johns Hopkins study were: prompt debriefing; an opportunity to discuss ethical concerns with the event; the ability to discuss how similar events can be prevented; timely information about the processes that take place after an event has occurred; access to counselling, psychological or psychiatric services; and formal emotional support.

There are excellent resources available online: Medically induced trauma support services includes a downloadable toolkit for supporting clinicians.

What do you think?

A gift for BLOOM

2012-01-02T08:46:00.000-05:00

David and Lynn Coriat (parents to Jessica above) have donated $100,000 to BLOOM. I interviewed David to learn about why his family made this generous donation! David is executive vice-president and chief financial officer at Slaight Communications, an investment and entertainment company in Toronto. Slaight is a partner in SiriusXM Canada. Covering the costs of BLOOM – which is mailed free of charge to families and professionals – is always a challenge. The Coriat’s significant donation will make both 2012 issues possible and allow us to expand into new formats – including a BLOOM speaker and video series. Thank you David and Lynn! Louise

BLOOM: What is your connection to Holland Bloorview?

David Coriat: My connection is my daughter Jessica, who has seen Dr. Wedge there on numerous occasions after surgeries. Jess has an affinity for Holland Bloorview and her eyes light up whenever she’s there. She’s told us a lot about what Holland Bloorview does for the kids.

BLOOM: Why did you decide to make this donation to BLOOM?

David Coriat: BLOOM offers parents a forum to learn more about other kids with disabilities and to learn about the environment as a whole – at a time when a lot of their friends and associates tend to move away from them because disability is still a stigma in our society. Parents of children with disabilities face challenges on a daily basis. What BLOOM does is offer a forum for learning and sharing and the comfort that “I’m not alone. There are a lot of people in the same situation.”

BLOOM: What have you learned as a father raising a daughter with a disability?

David Coriat: Our society still has a negative view of people with disability and our environment is not set up to nurture children with disabilities. Unless they’re fighters, these kids get buried in the system and shunned. When my daughter went through the school system, she was ridiculed. She has a strong personality and a tough skin, and was able to take it. But now I see her at 21 desperately looking for a job. She passes all the phone interviews because she has the gift of the gab, but the minute an employer sees her walker, the doors close.

BLOOM: What changes would you like to see to improve the lives of children with disabilities?

David Coriat: It has to start at the political level where disability is put at the forefront. And there has to be education at the school level, because kids are mean – and their parents are even meaner – when they see a kid with a disability. I think it’s going to take a couple of generations before kids with disabilities are accepted as part of the mainstream.

BLOOM: Is there anything else you would like our readers to know?

David Coriat: The key in my mind, for parents, is that even in your darkest day there is always a light at the end of the tunnel. There’s always a friendly shoulder or ear out there if you look for it – particularly among other parents who understand the challenges. And that is why I wouldn’t hesitate to support BLOOM. It provides a forum for hope and gives parents perspective.

'It's not what you see. But how you see it'

2011-12-27T09:34:00.000-05:00

This is a condensed version of an interview that appears in the January issue of BLOOM magazine. I don't think I've spoken to anyone who's made me stop and think the way Dr. BJ Miller (above) does. Louise

Dr. BJ Miller was a successful Princeton sophomore when he and his buddies decided, on a lark, to climb atop a parked commuter train; the lark turned dark when the train's electric voltage arced to his metal wristwatch, resulting in the loss of his legs below the knees and part of his left arm. As a triple amputee he went on to graduate and become a palliative-care doctor. He’s now executive director of the Zen Hospice Project in San Francisco. "I learned so much, particularly about perspective,” he says. “It's not what you see but how you see it."

BLOOM: It sounds like you were someone who had everything – at least on the outside – before your accident. How did becoming an amputee change you?

Dr. BJ Miller: I was well aware that I was very fortunate in many ways when I was younger and while that was good, it was also tough. Whenever I worked hard or was proud of something, it was discounted. I couldn’t take any credit for any of my achievements – or my pain. It was a bit of a funny relief when I became an amputee because I finally had an external source of suffering. Finally people stopped treating me like the world had just been handed to me. It gave me access to humanity in a different way and that helped me. It didn’t feel this way every minute, but I worked towards it feeling like a source of good fortune. Of course it was also a source of a great deal of pain and anxiety too. I’ve had the full gamut of emotions but on balance, over the years, more good than bad has come from it.

BLOOM: What was the greatest challenge for you?

Dr. BJ Miller: In a nutshell, how to see things differently. By pulling me out of my anything-approaching ‘normal’ frame of reference it really helped me upend that endless cycle we humans engage in of constantly comparing ourselves with those around us. Am I smart enough, rich enough, skinny enough? Compared to what? That’s the question I got to open up. I was given a way to let myself off that hook and be my own frame of reference. That was extremely liberating for me and it gave me a way into self-actualization that was wonderful.

It’s still a great challenge to keep it up – to still be my own boss, to be my own gauge. As much as that’s the greatest gift, it remains the greatest challenge. A critical subtext for disability and for my palliative work comes to this issue of following one’s own gut and reconciling what the external world wants and thinks and needs from you with being true to yourself. There isn’t a pat answer to that.

When I talk to school kids they’ll say “Don’t you miss having two hands?” and I’ll invariably say “Yea, I do, but don’t you miss having three hands?” Because for me personally it’s as ludicrous to go around thinking about having two hands as it is for them to think about having three. “I don’t sit around missing them anymore than you sit around missing three,” I’ll say. This frame-of-reference issue is a powerful thing.

BLOOM: How hard was it to relearn how to do things as an amputee?

Dr. BJ Miller: It took five years of hard work before I felt truly in my body again and coordinated in a new way. I think the hardest thing remains the arm. Having two hands is way easier than one, and the hands are so important. Sure, I miss my feet, but they’re just like a platform. They’re easy to duplicate. I can get around on my prosthetic legs.

BLOOM: What did you learn about having a visible difference in our culture?

Dr. BJ Miller: I’ve learned a lot because I was suddenly snapped into being part of a minority, of being ‘the other.’ All of a sudden I embodied something that most people fear. I was very aware of this sort of repulsion that people felt. It was hard to see the terror on kids’ faces, or parents pulling their kids away from me. Or if I surprised someone, and I was wearing shorts, and they were horrified. Sometimes it took the guise of pity, which I knew from my mom was the enemy. Sometimes the pity felt nice because old women would come up and give me $20 – even when I was in medical school! It definitely was hard and I had to really concentrate on sticking my chin out when I walked out of my bedroom to face the day.

The fascinating part was that about two years after the accident I noticed people’s reactions got a little better. And after five years I noticed a big difference. I must have carried myself differently. At first, I’d drive like a mad man and get pulled over by the cops and they’d take one look at me and let me go. Or if I was flying, I’d be bumped up to first class every time and they’d sneak bottles of wine into my bag. But then that just stopped. Did I reach a new level that I didn’t trip up these responses in others or had society evolved?

BLOOM: How did you cope in the early days?

Dr. BJ Miller: I was full of pain and fear. But I can’t tell you how important it was having grown up with a disabled mother. For much of my mother’s life she used an electric wheelchair and being in the world with her, I vicariously learned a ton of the things we’re talking about. As a child I was sensitive and a little worried – ‘Gosh, I’m lucky in all these ways and could I even handle it if I had a disability?’

So I was coming from a different place when I became an amputee than most people. I loved my mother so much and was aware of the way the world treated her – and yet I didn’t want to collapse into hating life. These issues had been rumbling around in my head for a while. I didn’t wake up on day one and see my situation as a great challenge. But pretty soon I was aware that it was that – a great challenge. I knew that and I had to live it.

BLOOM: Do you have a personal philosophy that helps you see things with perspective?

Dr. BJ Miller: I’ve only read The Serenity Prayer a couple of times but I’d have to say that it registers with me. Teasing out what you can control from what you can’t control – I can’t think of a better skill to acquire as a human being than that. Because whether or not you qualify as disabled, life is full of pain and difficulty. Even if you have all the perfect circumstances, at some point Mother Nature will insist upon certain things from you, like your own death. You can’t change the things you’re looking at in so many ways, but if you’re going to use your energy, put it into how you see.

BLOOM: Why did you become a palliative-care specialist?

BJ Miller: Because all of the things I’ve learned to get through my day seem to have broader relevance for people dealing with various themes of suffering. Suffering is a unifying human bond and it comes in many stripes and colours. And even if you have a perfect life you still have to say goodbye to it at some point. I love finding and working from the common denominator – and suffering and mortality are the most thorough.

After med school I thought I would go into rehab medicine but when I did a rotation in that I was turned off. It seemed to be a very mechanical field, while a lot of what we’re talking about has to do with the transformational powers of coping with disability – that there’s this raw material for transformation and growth and interest.

The goal in rehab seemed to be to get back to where you were before the injury and that to me was fundamentally flawed. Generally it’s not possible, but more importantly, why undermine and cut yourself off from all the beautiful stuff that comes your way when you embrace differences? I’m sure there’s a balance to be struck with therapy, but overall, celebrating differences – especially the ones you can’t change – is a better way through, if you ask me.

Photo above by Brant Ward ran with a feature about BJ in the San Francisco Chronicle.

Happy holidays!

2011-12-15T13:48:00.002-05:00

Dear readers:

I am off to England tomorrow to a small town not far from where this robin had its picture taken.

I had booked this ticket to take care of my uncle in hospital there, but sadly he died last week. So now I will be staying at his home in the beautiful Suffolk countryside. The robin is appropriate because my uncle always sent us Christmas cards adorned with robins.

Something I've noticed recently on the BLOOM blog: our page counts go up when we post videos (so you like watching them), but the comments go down. Thoughts? Is there a reason people don't like commenting on videos?

I won't have access to blogger until after Christmas. So I wish you all very happy holidays and am passing along a few links. Louise xo

Letting Ruth go: My daughter's wheelchair was her legs, her computer her voice

Asperger's syndrome inspires homeless woman's comic book strip

Official trailer: Rollin' with Zach

A drug that wakes the near dead

Focus on deficits masks a child's beauty

2011-12-13T15:54:00.000-05:00

A highlight of the ethics conference at Montreal Children's Hospital was a parent panel. Nathalie Bouchard, above, was one of those parents. Here she talks about how a medical focus on deficits harms the relationship between parent and child. Nathalie was interviewed in a playroom at the hospital. I'm happy to report that shortly after this interview a tiny dog was brought in for 'pet therapy' and there were no more tears! Thank you Nathalie!

Still kickin' at Kumon

2011-12-13T10:54:00.000-05:00

Advocacy in an unfamiliar culture

2011-12-12T09:43:00.001-05:00

Getting your child with disabilities services can be a challenge. But imagine going to bat for your child in a language you don't understand? And what if you didn't feel comfortable talking openly about your child's disability? These are just some of the barriers facing parents in the Canadian Somali community says Shukri Farah (above) in another BLOOM clip.

This and that

2011-12-08T14:44:00.001-05:00

Over 70 per cent of 1,148 respondents to an online survey by the UK's Contact a Family said they've experienced mental-health problems such as anxiety, depression and breakdown as a result of the isolation they experience raising a child with a disability. According to Forgotten Families, British parents report "a lack of social interaction due to difficulties working and not having the time or money to do family activities others take for granted; a fear of how people will react when they go out with their child; and a feeling of being alone, even when surrounded by people, because no one else shares their experience."

I heard four-time Canadian Olympian rower Silken Laumann interviewed on CBC about raising a daughter with autism a couple of weeks ago. Silken lives with her partner GoodLife founder and CEO David Patchell-Evans (known as Patch). They each have two children, and Patch's daughter Kilee, 15, has severe autism and requires 24-hour care. This is a beautiful blog Silken wrote about the impact of attending a dance with Kilee and other youth with disabilities:

Just start dancing
These teens and adults live everyday in a world where they don’t “fit in” not because of anything that they are doing, but because of our own discomfort with looking different, acting different, speaking too loudly. These young people have the real gift, the gift of expressing themselves authentically, without a self-censoring process that sifts out so much of the joy. It is we who have the disability, the inability to express ourselves authentically in our life, the attachment to fitting in that is so near and deep inside us that we rarely can let go of it.

If your child has seizures and developmental disability, don't miss this webinar Dec. 13 moderated by parent and BLOOM contributor Elizabeth Aquino and hosted by the National Center for Project Access of the Epilepsy Foundation.

Webinar: Communicating with Your Developmentally Disabled Child During Adolescence and Puberty

Costs, quality-of-life ratings put complex kids' care at risk

2011-12-08T09:48:00.001-05:00

Pressure to contain health costs over the next decade will put the care of a small group of children with complex medical needs and severe disabilities at risk, says Dr. Chris Feudtner, pediatrician and director of the department of medical ethics at the Children’s Hospital of Philadelphia.

“About 20 per cent of the pediatric population generates about 80 per cent of our health-care bill,” said Dr. Feudtner at a Grand Rounds on ethics in the care of children with disabilities at Montreal Children’s Hospital last week.

“The rallying cry is that we need to cut down on the use of what are called marginal therapies – on drugs, therapies and procedures that cost a tremendous amount of money but offer little benefit. It’s a short manoeuvre from that mindset to take certain people with certain conditions and marginalize them.”

Dr. Feudtner showed a photo of one of his patients – a baby who uses a ventilator – and said: “We don’t want to end up having a bureaucrat 1,000 miles away saying ‘this is marginal medicine and we need to cut it out.’”

In analyzing the costs and benefits of treatments, economists measure quality-of-life years gained or lost as a result, he said. These analyses are typically based on models that assume low quality of life for people with chronic illness and disability.

Studies of self-reported satisfaction with life in people with disabilities, however, show a different picture.

A large European study of children with cerebral palsy found they rated their quality of life on par with their peers.

Research shows that patients rate their happiness and satisfaction higher than their families do, while their families rate it higher than doctors and nurses do. And the longer a person has a disability, the happier they are with their life. One to two years after a spinal-cord injury, people tend to rate their life as good as, or better, than before.

“Who judges quality of life in people with disabilities?” Dr. Feudtner asked. Should it be a panel of doctors, a random sample of the population who haven’t experienced disability or a group of patients or parents who understand firsthand what it means to live with the condition?

“Our current analyses of quality of life don’t account for the amazing capacity of people to adapt and grow, to handle difficulty, and to say ‘my life is good,’ without changing the difficulty.”

That’s because ratings are determined by able-bodied people who try to predict the impact of disability on everyday life.

Current analyses of quality of life don’t factor in the cost or benefit of a drug or treatment on people connected to the patient, such as parents, siblings and grandparents.

“Is medicine a one-on-one proposition or do we look at it from a societal perspective that includes people connected to the patient?” Dr. Feudtner asked. “If we cut respite care and a parent has to stay at home, do we count their lost wages as costs? If my child’s quality of life growing up makes me happier, do we count that? What are the ancillary benefits of having a child do better? There are instruments to measure family stress and depression. If a family receives social services, does their level of anxiety and depression drop?

“Right now a huge amount of the costs of raising children with severe disabilities is being born by the families.”

In a study of children receiving palliative care, Dr. Feudtner found nearly half were facing substantial financial strain. Those who reported the direst finances had children whose health had declined most steeply.

“It’s hard to figure out how to capture these costs,” he said. “But to disregard them means that you really aren’t operating from a societal perspective.”

With unsustainable health-care costs projected over the next decade, “ethical pronouncements about ‘it’s the right thing to do for children’ will not have the same sway they had in the past,” Dr. Feudtner said. “We have to marry the ability to speak to deep ethical values and go head to head with accountants.”

Joey, above, is a child with complex medical needs.

The demonization of the disabled

2011-12-05T15:22:00.001-05:00

There is a climate of hostility towards people for whom life is already difficult and it is being fostered by politicians and journalists, writes Observer columnist Ian Birrell.

The demonization of the disabled is a chilling sign of the times

Swimming lessons

2011-12-05T15:00:00.001-05:00

In the 1970s there were no special swimming lessons for kids with disabilities in Edmonton. My brother loved the water, so my parents registered him for swimming lessons. The staff looked at him and said that the teacher wouldn't have him in the class unless a family member was there to help Leo. My parents looked at me. I knew they wanted me to say I would sign up for the same class, and be Leo's helper. I told them what they wanted to hear. This story is about why I never learned to swim.

Swimming lessons
By Sophia Isako Wong

I am afraid of the water. Clutching the side of the pool, I edge my way along, hoping the teacher won't notice me. All the other kids are in the middle of the pool; I am the only one who can't keep up.

"Come on, Sophia! Let go of the wall and kick your legs!"

I transfer one hand to the flutterboard, a thin slice of blue Styrofoam that doesn't support my weight sufficiently.

"You can do it! Both hands on the flutterboard, and kick your legs straight out!"

I take a deep breath and start kicking my legs. Maybe if I can get my legs going first, I'll be able to let go of the wall.

SPLASH!

Without looking, I know what has happened. My brother Leo has done it again: a big cannonball into the pool, gleefully creating a big noise and splashing all our classmates. The teacher calls my name. I wave my arm to show I've heard her.

"I'm coming." I pull myself out of the pool, drop the flutterboard, and make my way to my brother. Eyes shining, he watches me approach him with a huge smile on his face.

"Hey Sophie, did you see me? I made a big splash! That was fun!"

"I know, Leo. I saw you, and I heard you. Did the teacher ask you to do that?"

"No, it was my idea! I made a big splash!"

"Leo. Look at me. This is not play time. This is swimming-lesson time. Can you listen to the teacher, please? The other kids don't like it when you splash them."

He is crestfallen. "Oh."

I give him a big hug. "We'll play in the water after class, I promise. Can you do just swimming for now? Just until the end of class?"

"Oh.... ohhhhkay."

I point toward the teacher and look from his face to hers, until his eyes focus on her. I return to the edge of the pool. Now the kids are doing a different exercise and I've missed the instructions. Shivering, I grab my flutterboard, get back into the cold water, and watch them. I’m still afraid of the water.

Sophia Isako Wong is an associate professor of philosophy at Long Island University in Brooklyn, New York. Her brother Leo has Down syndrome. Here's what she said about the photo above: I don't have any photos of us in the pool, but here's one of us in the bath -- another activity in which I routinely supervised my brother while my parents were out of the room. I think our expressions show the way we feel about water.

'Burden' of complex kids not whole picture, ethicist says

2011-12-05T09:46:00.003-05:00

I was privileged to interview Franco Carnevale at the ethics conference on children with disabilities at the Montreal Children's Hospital last week. Franco is a clinical ethicist who worked for a couple of decades as head nurse in the pediatric ICU at Montreal Children's. He's also a psychologist!

Here he talks about "an implicit understanding that (children with disabilities) don't count in the same way as other children" -- a bias found within the health system itself. To illustrate his point, he shares a research project to study families of children who live at home with ventilators. Franco admits that going into the study, he assumed they would be documenting primarily hardship and stress. But what he found was "a lot of the most stressful moments in life are intertwined with the things that matter the most." He titled the resulting paper: Daily Living With Distress AND Enrichment.

Do not miss this clip! Go directly to YouTube for a full-screen version. Louise

Does every child matter?

2011-12-02T16:29:00.005-05:00

The results of 'Does Every Child Matter, Post-Blair?' were released today. The research project at Manchester Metropolitan University asked what life in England is like for disabled children age four to 16. Researchers spoke to disabled children, their parents/carers and professionals to ask about their lives from 2008-2011.

Here are a few findings I know will resonate with readers. Check out the report in detail (link above) to learn about the researchers' recommendations. Louise

disabled children sometimes sit outside 'mainstream' children's policy and 'mainstream' services including education, health, leisure and social care
families with disabled children are often isolated with little support in their communities
despite changes in legislation, disabled children are still excluded from a range of leisure activities. The biggest barrier to disabled children's access to leisure was the attitudes of other people. Physical and attitudinal barriers mean that many disabled children had no choice but to attend segregated leisure activities.
disabled children living with life-limiting conditions and their families are likely to experience isolation and poverty. Parents and carers are often excluded from support networks. The discrimination families face in life continues in death.
parents come under huge pressure to make their disabled children 'normal.' When families differ from the 'norm' this leads to exclusion -- children are excluded from friends, schools and leisure opportunities and parents are excluded from friendships and work
disabled children have often been excluded from arts for its own sake (their creativity is often thought about in terms of therapy)
parents are often asked to talk negatively about their disabled children in order to access services and support, whether in education, health, leisure or social care/benefits. Parents are asked repeatedly to talk about what their children can't do, as opposed to the support they require. Parents say this has a negative impact on their relationship with their child.
disabled children often have to deal with negative perceptions of their bodies, including being stared at or questioned about their bodies. Disabled children's bodies often cause emotional reactions in others because they serve as a reminder that none of our bodies are normal
when disabled children are viewed as 'vulnerable,' bullying is often accepted as inevitable. Often the bullying goes unnoticed by the adults who are sometimes also the perpetrators.

International disability day

2011-12-02T11:04:00.002-05:00

Change your Facebook profile picture for the day December 3 to support the International Day of Persons with Disabilities. Use your own social network to raise awareness!

How?

1. Visit the Holland Bloorview fan page.
2. Right click on our profile picture and select "save target as" in the drop menu.
3. Save the image on your desk top.
4. Go to your Facebook page and change your picture.

Ask your friends to do the same!

A fate worse than death?

2011-12-02T10:44:00.002-05:00

I attended a fascinating conference Wednesday at the Montreal Children's Hospital on ethics related to the care of children with disabilities.

One of the themes was cultural devaluing of children with disabilities – and how it can play out in decision-making about care, including whether to withdraw care from premature newborns with significant disability.

A neonatologist in the audience made the following comment.

“There is a feeling among my colleagues – an unspoken and probably unconscious bias – between physical and mental disability. Sometimes neonatologists think if you're not perfect mentally, you're better off dead. But when it comes to physical disability, they will go a long way with interventions.”

Neonatalogists care for newborns with complex, life-threatening problems related to prematurity, illness or congenital disability.

I think the stigma that intellectual disability is worse than physical disability is widespread, even within the disability community itself.

We can't know if what the doctor said about the pervasiveness of this attitude in neonatology is true. Perhaps she is ascribing her own bias to others. But it would certainly be shocking if specialists trained in the care of disabled newborns held such views.

According to the American Academy of Pediatrics, neonatologists go to medical school for four years, then train as pediatrics residents for three years, then train for three more years in newborn intensive care. That’s a decade of learning.

Is it reasonable to expect that in this 10-year span the attitude that intellectual disability is worse than death would be challenged?

Neonatologists, as part of their training, should be required to have extensive interaction with families of children with intellectual and other disabilities, so they have a firsthand understanding of what life with these conditions is like. I hope we hear from a neonatologist about what kind of exposure to families of children with disabilities is included in their training.

At the Montreal conference we also heard about the Disability Paradox – that people with serious disabilities rate their lives as good or excellent while able-bodied people, particularly medical professionals, rate quality of life in people with disabilities as poor.

And we heard about research that shows that the way a health problem is framed influences the decision a family makes about treatment choices. How clinicians order information, the words they choose and even the tone of their voice can have a significant impact on how parents of children make medical decisions.

If a neonatologist were to believe that intellectual disability is a fate worse than death, how could that bias not seep through when conveying this diagnosis to families? Wouldn't that belief run contrary to communicating that a child with intellectual disability has value?

When a life hangs in the balance, I believe parents should receive the most complete information about intellectual disability, including the perspectives of families whose children live with it.

Balancing a marriage and kids with special needs

2011-11-24T15:18:00.003-05:00

Noor Al-Shaikh (above) and his wife Rita have three children. Gisele, 10, and Sienna, 5, have a rare, non-progressive condition called Juvenile ALS type 2. They can’t walk on their own and use canes, walkers or a wheelchair. Sister Iliana, 7, is not affected.

While challenging, Noor believes raising children with disabilities has strengthened his relationship with Rita.

In this BLOOM clip he shares strategies for keeping a marriage strong. To view this on a full screen, go directly to YouTube.

When is autism an advantage?

2011-11-23T15:15:00.006-05:00

Changing perceptions: The power of autism is an interesting piece in the online Nov. 2 issue of Nature magazine which has produced a lot of blogger discussion.

Author Laurent Mottron, a University of Montreal researcher in the cognitive neuroscience of autism, has eight people on his research team who have autism.

"As a clinician, I...know all too well that autism is a disability that can make daily activities difficult," Mottron writes. "One out of ten autistics cannot speak, nine out of ten have no regular job and four out of five autistic adults are still dependent on their parents. Most face the harsh consequences of living in a world that has not been constructed around their priorities and interests.

"But in my experience, autism can also be an advantage. In certain settings, autistic individuals can fare extremely well. One such setting is scientific research. For the past seven years, I have been a close collaborator of an autistic woman, Michelle Dawson. She has shown me that autism, when combined with extreme intelligence and an interest in science, can be an incredible boon to a research lab.

"...Autism's many advantages are not part of the diagnostic criteria. Most educational programmes for autistic toddlers aim to suppress autistic behaviours, and to make children follow a typical developmental trajectory. None is grounded in the unique ways autistics learn.

"In cases where autistic manifestations are harmful — when children bang their heads on the walls for hours, for example — it is unquestionably appropriate to intervene. But often, autistic behaviours, although atypical, are still adaptive."

Facing Autism in New Brunswick has written a piece in response to the Nature article: Autism advantage? No! Connor Advantage? Yes!

"It is my deeply rooted belief that it is important to speak honestly about autism and the challenges it presents, particularly for those persons who are severely affected by autism. I do not believe that autism, a mental disorder, is an advantage and my commentaries reflect that belief.

"That does not, however, mean I agree with the flimsy argument that describing autism challenges honestly means that I am not recognizing the rights of autism persons or recognizing that an autistic person has any intrinsic value as a human being. That argument is based on nothing more than ideological rhetoric."

What do you think?

Filmpossible fever

2011-11-23T12:18:00.006-05:00

Gabi Cherng and Gavin Daley, second and third from left, were recognized at the filmpossible awards last week as the stars of the first-place entry in the photo category -- Lucky fin love -- and the I can be me! video, which won the Cisco Visibility Award.

They accepted the first award for Toronto photographer Annya Miller, who was unable to attend. Their submission included the comment: "Left hands are so over-rated!"

Holland Bloorview's filmpossible is an online contest where filmmakers and photographers submit videos and photos that bring visibility to disability.

Parents play critical role in safety of hospitalized children

2011-11-22T15:11:00.003-05:00

A study published in the Canadian Medical Association Journal this week underscores the importance of families in identifying adverse events or near misses (medication errors, treatment complications, equipment failures or miscommunication between staff or between staff and family) in the care of hospitalized children.
Over one year, 544 families of children on a single ward at British Columbia's Children's Hospital were asked to answer a questionnaire about adverse events and near misses during their hospital stay.
The purpose of the study was to test whether the new family reporting system would change the rate of reporting of adverse events by health-care providers.
The study found that family reporting did not alter the rate of safety reports by health-care providers.
A total of 321 adverse events were identified by families. Almost half were deemed by independent clinical experts who reviewed the data as legitimate 'near misses' or to have caused some degree of patient harm.
Only 2.5 per cent of the adverse events reported by families were reported by health-care providers.
Of the 321 events reported, 139 families received apologies for the incidents.
"We found that families observe and report safety problems differently than do health-care providers," researchers said. "Further research is needed to delineate how best to harness the potential of families to improve the safety of the health-care system."

Talking about limb difference

2011-11-21T15:46:00.002-05:00

In the first of a series of BLOOM clips, Janelle Cherng talks about explaining daughter Gabi's limb difference in social situations.

In BLOOM clips parents and experts talk about childhood disability. Send us your ideas for future topics! Thanks, Louise

Violin solo: 'It's not something I thought I'd be able to do'

2011-11-21T11:03:00.001-05:00

We've written about Eric Wan (above) before, a graduate student in engineering at Holland Bloorview who helped develop the Virtual Music Instrument, a software that allows children who can't manipulate conventional instruments to make music. Eric, who was paralyzed at age 18, will play violin -- with head movements -- with the Montreal Chamber Orchestra tomorrow. Watch this YouTube video and read more in this Montreal Gazette piece.

'The third parent'

2011-11-18T14:34:00.005-05:00

Sophia Isako Wong (left) is an associate professor of philosophy at Long Island University in Brooklyn, New York. She is also a sister to Leo (right), who has Down syndrome. Below is a short story Sophia wrote about her childhood. But first she speaks about her research into children who take on a parent role in caring for siblings with disabilities or other members of the family.

In my research, I analyze existing psychological research on ‘parentified’ children in the US and the UK to explore how distinctive elements in the early caregiver role negatively impact children’s emotional and moral development.

The research shows that taking on the parent role prematurely as a child has mostly negative impacts, to be honest with you. Of course there are many positive things that come out of growing up with a sibling with disabilities, some of which I've tried to show in the story, but I feel that children are harmed when parents ask them to take on responsibilities requiring adult skills. Hope the story doesn't come across as too hard on my parents. It wasn't their fault they didn't know about respite for the first 25 years of my life.

‘The third parent’
By Sophia Isako Wong

It is a hot summer afternoon and I am looking at a pig. Large, pale pink, smeared with dust, bristly, and panting, the pig lies on its side in the shade of a wooden shed. It hasn’t moved in the past 20 minutes. My 10-year-old brother sits cross-legged on the cement, having positioned himself directly opposite the pig, so that he can look straight at its face. He is staring attentively at the pig, watching its every move, even though it never moves. He looks like a besotted lover watching his beloved sleep. In fact, the pig is probably asleep; its eyelids are almost closed.

I examine my brother’s face. Chin propped in his hands, elbows on his knees, he is blissfully unaware of my impatient mood. He is daydreaming about the pig, perhaps imagining the pig’s dreams. He is utterly content and at peace.

“Leo? Let’s go see the river otters. Remember when we saw them playing in the water last week?”

He doesn’t turn his head towards me. “Not yet. I’m watching the pig.”

“Still? Why do you have to stay here so long?”

“I love pigs.”

This is our weekly routine. Every Wednesday, our mother teaches violin students in our living room. She hands me money and kisses us goodbye as the doorbell rings. Hand in hand, my brother and I walk up the hill, then down the gentle slope to the Storyland Valley Zoo at the end of the road. I pay our admission, and snatch glimpses of other animals as Leo pulls my hand with determination, heading straight to the pig. Leo sits down in his appointed spot, right across from the pig, and refuses to budge until he has had his fill of pig-watching.

I am bored. I explore the entire area adjacent to the pig’s enclosure with my eyes. I see dirt, dead grass, the fence against which Leo presses his face, an intriguing house-sized cage next door with tropical birds drowsing in the afternoon heat. I sidle toward the cage and position myself so that I can watch the birds while still keeping an eye on my brother in the background.

Sometimes I play a game in my mind, fantasizing that I walk away from him and go to visit two or three other animals while he is entranced by the pig. Unlike Leo, I don’t have a favourite animal. I like to see them all, to take in the different sights and sounds, to explore the whole zoo as much as possible. I hate staying in the same spot every time. When I’m with Leo, and I’m always with Leo because our family takes him everywhere, we never get to see more than a few animals each week, because we spend most of the time pig-watching.

Walking away from him is just a fantasy; I am fully aware that I can’t take that risk. If anything happens to him, my parents will never forgive me. I’m responsible for getting him back home, safe and happy, once the lessons are finished. If he makes any mistakes, gets into trouble, or bothers anyone, perhaps by going up to them and hugging them, or sitting in a man’s lap to stroke his beard admiringly, it will be my fault for not watching closely enough. I am the third parent. I am 11 years old.

During Leo’s pig phase, he drew pictures of pigs, made pig-like sounds, received toy pigs for every special occasion, and watched that same pig every week for the whole summer. When we asked him not to “eat like a pig,” he would reply, “Why not? I love pigs.” He squealed with delight when our grandmother brought him a huge life-sized pig toy from Japan, covered with fabric in a curious floral pattern reminiscent of an Irish granny’s dining room. The two of us spent many happy hours throwing the pig at each other in a game we called “Dodgepig.”

As Leo matured, he stopped worshipping pigs. Now a middle-aged adult, he paints many kinds of animals, especially African wildlife, and his #1 top favourite is hyenas. I think he first fell in love with hyenas when they appeared onstage as masked humans in military-style khaki combat boots, snarling rebelliously and plotting against the Lion King.

These days we don’t see each other more than once a year or so. The New Year has started, and it is the night before Leo has to get up early to catch his flight home. We’re both tired, but we don’t want to go to sleep just yet. So we are lying side by side, enjoying our time together, not wanting to say good-bye until the last minute.

I ask, “Leo, why do you like hyenas so much?”

His reply is simple: “Because they’re carnivores.”

I think I know what he means. Hyenas are powerful, strong, clever animals who eat fresh meat. Like dogs, but they get to run wild and free. They watch larger predators kill their prey, then move in to scavenge their meals. When Leo eyes my unfinished plate, asking “Ummm.. do you have plans for that?” he is scavenging extra food along with the hyenas.

Leo opens his mouth and emits a sound I’ve never heard from any human throat before. It is a low growl, almost like a Tuvan throat-singer’s undertone, which I cannot reproduce no matter how I try. After years of voice lessons, he can relax his throat and reach below the normal range of his baritone voice to produce this frightening, throaty growl.

This sound inspires me to make a hyena mosaic. I select shades of Mexican smalti (glass) for the hyena’s body and mix dark grey marble and glass to make that fearsome growl come alive. While I outline the shape of the hyena, a bright red and orange crown emerges unbidden on her head, so I call the piece “Hyena Queen.” I mail it to Leo in celebration of his 40th birthday.

He calls me while I am at work and leaves a voicemail: “Hey, Sophia! I want to give you a message. Your parcel just arrived. For my birthday present. The hyena mosaic. And… I like it!”

Above is a photo of us with Leo’s hyena collage and drawing, a sculpture of a hyena, and my mosaic on the wall behind us.

Seeing through a parent's eyes

2011-11-18T13:25:00.001-05:00

I'm speaking to a group of student engineers next week about our journey trying to find a robust means of communication for Ben. These students work with families to develop technology that gives children who can't speak or move access to communication and control of a computer.

As I was putting the presentation together, it struck me that there were two distinct ways of "seeing" Ben. One was through medical descriptions that focus on deficits, and the other was through a parent's eyes -- mine.

I think every parent of a child with disability wishes the world could see their child through their eyes. Especially when a child can't speak, the parent's knowledge of that child's inner life is so critical.

This passage from Cognitive Disability and its Challenge to Moral Philosophy captures this beautifully:

Philosopher Eva Kittay quotes writer Evelyn Keller talking about Nobel-winning scientist Barbara McClintock.

Inevitably, "seeing" entails a form of subjectivity, an act of imagination, a way of looking that is necessarily in part determined by some private perspective. In ordinary life, these private perspectives seldom emerge as discrepancies; the level of shared vision required of people to cooperate is usually met. But science and art alike make tougher demands on intersubjectivity...; both are crucially dependent on internal visions, committed to conveying what the everyday eye cannot see."

Keller, Kittay writes, "goes on to argue that McClintock's 'feeling for the organism,' the close personal attentiveness that McClintock devoted to the entities that she studied, allowed a personal internal vision to see what the 'everyday eye,' which in some cases are the eyes of other scientists as well as lay people, could not perceive.

"One can say the same of someone who is in close contact with a dependent person, especially a person who is limited in his or her communicative skills. The close attentive eye needed to care for the dependent individual gives rise to perceptual capabilities that are not shared by those who have at best a glancing acquaintance."

I hope that in my talk to the students I can emphasize how critical it is for them to take the time to see the child they are working with through their parents' eyes. For without that lens, they will have a very limited and murky view.

This and that

2011-11-17T16:29:00.001-05:00

Sara, BLOOM's designer, and I walked in Spiral Garden the other day (above). It's the magical location for a summer program run by practising artists that brings together children with and without disabilities. It's a peaceful place that fills you up with nature and growth and colour.

I've been mulling over some blog ideas in the last couple of days, but none have come to fruition. One is about what I perceive to be an unhealthy, over-emphasis on IQ percentiles in services and schooling for people with intellectual disabilities.

We had a wonderful open house in the Family Resource Centre last night and many parents and staff attended. I was able to do three video interviews with parents for a new series I hope to post on BLOOM. These will be short 1.5 to 2 minute video clips of a parent talking on a topic of interest.

The interviews last night were about: helping others feel comfortable with your child's limb difference; strategies to keep your marriage strong when raising two children with disabilities; and cultural and language barriers to accessing services for parents in the Canadian Somali community.

Sara will help me with editing early next week so stay tuned.

One of my British cousins read the last issue of BLOOM and described it as "uplifting" and "sobering." I thought that was an apt description for special-needs parenting!

Here are some links. Louise

Raising a disabled child takes a village -- and an RDSP

Tackling disability discrimination takes more than wheelchair ramps

Inclusion: The right thing for all children (take a look at the comments too)

For some special-ed students, inclusion is deferred

How do you explain a missing hand to a child?

Difference is an artist's game

Answers to your questions on applying with a learning disability

Medikidz (Comic books that convey medical information for kids)

On the inside looking out

Cognitive disability and personhood

2011-11-14T12:35:00.001-05:00

Author Donna Thomson (The Four Walls of My Freedom) directed me to a book called Cognitive Disability and its Challenge to Moral Philosophy. It's a collection of essays that address philosophical questions raised by people with cognitive disabilities, which the authors define as those with intellectual disability, autism and Alzheimer's disease.

I haven't read the book yet, but the introduction notes that people with intellectual disability fall short of many of the traditional philosophical criteria for personhood, notably, the ability to reason.

I googled a couple of the authors and came upon this fascinating podcast of a talk by Sophia Isako Wong, an associate professor of philosophy at Long Island University in Brooklyn, New York. Wong's presentation is titled Duties of Justice to Citizens with Cognitive Disabilities and asks: "Do we have different or lesser duties of justice to citizens simply because they are labelled with cognitive disabilities?"

She looks at Harvard philosopher John Rawl's theory of justice which includes the fully-cooperating assumption: "I have assumed...that while citizens do not have equal capacities, they do have, at least to the essential minimum, the moral, intellectual and physical capabilities that enable them to be fully cooperating members of society over a complete life."

Some interpret this passage to mean that people with cognitive disabilities don't count as fully cooperating members of society.

I encourage you to watch Sophia's podcast (I haven't watched the entire presentation). I have taken the book of essays out of Holland Bloorview's library and the content looks fascinating. One of the editors -- Eva Feder Kittay -- is a philosophy professor at Stony Brook University and has an adult daughter with intellectual disability. I think Eva would be a wonderful contributor to BLOOM and hope to seek her out.

We had the same ache in our hearts

2011-11-10T11:34:00.006-05:00

We've had guest blogs about the impact of a child’s disabilities or special needs on a marriage. I found a piece I wrote about the different ways that my husband D’Arcy and I reacted to Ben’s genetic condition early on. It can use some work, but I thought it might be of interest to other parents. D'Arcy read the piece and remembered some of these things differently, but was okay with me running it! Louise

We had the same ache in our hearts
By Louise Kinross

I was the bearer of bad news.

As Ben’s primary caregiver, I was typically the one who heard first about new diagnoses. I received the news and stewed about it all day, then regurgitated it the second that D'Arcy walked in the door.

I got my sense of control from becoming an expert on my son’s rare genetic condition and therapeutic treatments. I thought that if I could only learn enough about his special needs and every available medical and alternative treatment, I could ‘fix’ or in some way control his future.

D’Arcy got his sense of control from losing himself in work he loved all day, then coming home and wanting to delight in his son. He kept his anxieties and fears shelved in an unreachable place, protected by a blanket of denial. He wanted to be the happy, easy-going, laid back dad – the party dad who would do anything to make his son happy and would never, ever hurt him, even if something was medically necessary.

When Ben was almost 3, a virus that we all had turned to pneumonia in his right lung. We were used to giving Ben ventolin masks whenever he had a cold – which brought on his asthma and terrible inbreathing. However, this time in Emergency, when D'Arcy and I were left alone to give him the masks, he screamed and fought us off desperately. D'Arcy had to restrain him by holding his arms and hands down with his hands, and his body still with his knee, while I kept the mask on his face. I'm not sure if the medication smelled funny or if perhaps the compressor made a different noise from the one we have at home – but Ben fought to be free of it as if he was suffocating.

I knew it was essential for Ben to have the masks, but D'Arcy's soft spot kicked in.

He began to loosen his grip, letting Ben throw off the mask.

"He needs the mask," I yelled over the whir of the compressor, frantic that we not waste the medicine that was now billowing out aimlessly.

"It's hurting him," D'Arcy yelled back. "Give him a break."

"We are not giving him a break by not treating him," I snapped, and placed the mask firmly back on his face. D'Arcy pulled it off again. I put it back on and then we fought over it like two children: me trying to yank it away while D'Arcy refused to let go.

"XXXX off," I screamed.

Ben, as always, was at the centre of our relationship.

My daughter Lucy, now eight months old, lay behind us, sleeping peacefully in her car seat.

It would have looked comical, if it wasn't so sad.

I felt hopeless.

Feb. 1, 1997

DArcy and I were at each other's throats at the hospital. I am so tired of it. After our talk on Friday I felt some hope, like we could work things out – build a satisfying relationship and family. Now it just seem like we are back in the trenches. I am embarrassed and ashamed that I allowed myself to be mad in front of Ben.

It hurts so much to see Ben going through what he went through today: Being restrained for the mask, then being put in a "trap-like" device to have his chest x-ray. It is torture. I felt like I wanted to die when I watched his desperate screams. I feel so fragile emotionally, like the smallest thing will knock me off my feet.

D’Arcy tended to minimize and downplay any signs that Ben had medical or developmental problems.

I magnified them, carrying on me a yoke of perpetual anxiety, worry and high-alert.

I was the one who did the emotionally-difficult therapies – forcing your child to do things that were hard, frustrating, out of their comfort zone. Being the tough one because I never wanted to feel we hadn't tried everything we possibly could to help Ben.

I was often the one who took over the painful medical interventions because I knew they "had to be done." D'Arcy didn't seem able to do them emotionally.

Things like giving him repeated ventolin masks; drops at night in his highly-sensitive and painful ears (with structural differences that caused severe ear infections, despite eight sets of tubes, he learned as a toddler to go to sleep holding his hands over his ears); watching him fight sedation for medical tests till he began falling over; forcing him to wear a patch over his strong eye; taking his beloved ‘bobo’ – bottle – away from him at just over a year because it might be contributing to his ear infections (wrong).

Oct. 19, 1996

I have such mood swings. At certain times of the day I am feeling positive and happy and at others I feel very alone, isolated, depressed, angry – and a more recent emotion: bitter. It is hard for me to see others starting out in relationships or marriage or getting pregnant and knowing that they will probably never know the pain we have. I know I have to work through this because I DO NOT want to be a bitter person.

I continue to feel alienated from D'Arcy and angry at him. I feel like most of the "special" care for Ben – his physio, eye patch, appointments, all of the research about LGS and his growth problems – falls on me and sometimes it is too much. D'Arcy does do a lot of things with Ben – giving him his medicine, putting him to bed, getting up early in the morning with him. But I wish he would support me more with the daily physio, patch, growth problems and other issues related to Langer-Giedion syndrome. I have been feeling very negative about our relationship and it scares me. It seems like there is too much Ben-related pressure, stress and emotion. We are constantly setting each other off.

When Ben first started eating solids he had numerous choking incidents. Our pediatrician said they were isolated. D’Arcy tended to downplay them because he often wasn’t present when they occurred. We had taken special CPR training but the techniques we were shown – to hold him facing down over a knee and hit his back hard – seemed to make the choking worse. There were calls to 911 and police and fire trucks. I would shake afterwards. But when I called D’Arcy at work, he got so used to this that as I began to recount the latest horrifying incident, he would say simply: “Is he breathing now?” And if I answered yes, he didn’t want to hear more about it. Ben was later diagnosed with an uncoordinated swallow that meant when he swallowed, only some food went down, while the remaining food pooled at the back of his throat.

I went back to work full-time when Ben was 4. Suddenly D'Arcy – who had mornings off as he worked a late shift – was indoctrinated into the world of daily therapies and medical tests. One medical visit stands out.

Ben had hearing aids, but it was almost impossible to get him to wear them because his ears were so painful from infection. I called D’Arcy to ask how the morning appointment with the audiologist went.

"Horrible," he said.

"What happened?"

"She tested him without his hearing aids, and then she insisted we put the aids in. He kept taking them out, to the point that I had to physically hold them in and he was crying and fighting me.”

“Oh Darcy!” I said.

“Then I started to cry,” D’Arcy said. “So she told me I could stop.”

"I'm so sorry," I said. And I knew he had the same ache in his heart.

Does disability dampen teen sexuality? No! doctors say

2011-11-08T09:09:00.003-05:00

Teens with physical and intellectual disabilities are just as interested in romance and sex as peers, but are less likely to have a partner because they lack social opportunities and sex education, say two McMaster University doctors.

“Most of the challenges are a result of the widespread myth of asexuality and other negative stigma surrounding people with disabilities,” said Dr. Jan Willem Gorter, a physiatrist who runs a teen transition clinic at McMaster.

Gorter was speaking with Dr. Natasha Johnson, a pediatrician in adolescent medicine at McMaster, at the annual conference of the Ontario Association of Children’s Rehabilitation Services in Toronto yesterday.

Studies of youth with cerebral palsy and spina bifida show that while most wish to have a partner, less than a quarter have a steady boyfriend or girlfriend, Dr. Gorter said. “Friendships and relationships are just as important to them but their level of social participation is challenged."

Youth with disabilities report barriers to getting together with friends and participating in after-school activities and say they often can’t get out because of a lack of transportation. Anxiety about body image and low confidence are also factors, as are physical problems like spasticity and fatigue.

Youth don’t typically receive the sex education they need as it relates to their specific disability, Dr. Johnson said.

For example, they need to know how contraceptives may interact with other medications they take. The oral contraceptive pill can interfere with anti-seizure drugs and increase the risk of blood clots. Depo-Provera, a birth-control injection, can reduce bone mineral density.

Youth with spina bifida have a greater risk of having children with a neural-tube defect, so they need to understand the importance of taking folic acid.

Dr. Johnson noted that youth with disabilities are twice as likely to be victims of sexual abuse. “They have multiple care providers, they are dependent for sensitive personal care, they may not have the language to (report abuse) or they may lack an understanding of what is appropriate.”

Dr. Gorter said that stereotypes make it less likely that health workers and parents talk to youth with disabilities about sexuality.

Sexual development needs to be discussed early and often with children and their families. “They need to be given permission to talk about it,” he said, noting that he has youth in his clinic fill out a transition profile that includes areas like education and employment and intimate relationships. In the latter, youth check off which of these statements best describes them: ‘I don’t have experience dating. I have experience dating. Or I am/or have been involved in an intimate relationship.’

“If the teen doesn’t have experience, that’s an opening to ask: ‘What would dating look like for you? Are you interested in boys or girls – or both? What are your desires and how can we help you?”

Dr. Johnson said we need to teach young children the names of body parts and appropriate physical boundaries and to acknowledge sexual interest as an expectation in all children. Teens should be given the opportunity to speak with a health professional about sexuality privately.

“We need to be aware of our own assumptions,” she said, recalling a 12-year-old client with physical and learning disabilities whose short stature made her look much younger. “She told me she was attracted to males and had been dating since Grade 1. We can’t make any assumptions.”

Silent Sunday night

2011-11-07T08:55:00.001-05:00

Silent Sunday

2011-11-06T10:05:00.005-05:00

Resting in that grey area

2011-11-03T16:57:00.002-04:00

Some of you noticed that I deleted a post I wrote last weekend.

I had wanted to share something going on in our lives -- from Ben's perspective -- without getting into a lot of detail.

But because I felt compelled to respond to comments, I wrote more than I was comfortable with. I felt I had to defend my choices.

It got me thinking about how there is no one "right" way to parent a child -- with or without disabilities. Our children and families are too unique to benefit from cookie-cutter solutions.

But sometimes within the parenting community -- and within the special-needs community in particular -- we make judgements about other parents' choices and decisions. We take black and white positions and say there is only one way to parent, and if you're not doing it this way, you're not doing what's best for your kid. Maybe it's breastfeeding, or the language you use to describe disability, or maybe it's about inclusion, schooling, the amount and type of therapy you've got for your child, or where your adult son or daughter lives.

There are so many issues that can divide us, make us feel inadequate, when what we really need is support.

It helps to remember that we can never fully know another parent's or family's reality.

"Even when I think I understand what it's like to be a parent of special-needs children, I can only walk in my shoes, on my mountain and explain my view from here" wrote daddy blogger Tim Gort on Hopeful Parents last week

And as author and parent Amy Baskin writes: "Hang with people who make you feel good. Who don’t judge. Special-needs parenting is not a contest. You and your kids do the best you can."

What advice would you offer a younger you?

2011-11-03T15:10:00.000-04:00

BLOOM contributor Amy Baskin has a moving post at Today's Parent: it's a letter she wishes she could have written to herself as a brand-new mom to a child with autism.

If you could look back and give yourself advice for those early days, what would it be?

Talk to me!

2011-11-03T14:47:00.000-04:00

I'm keen to film and post a series of short video clips with parents talking on topics that matter to you.

What would you most like to hear another parent talk about?

Please let us know. Thanks! Louise

Take your kid to work day

2011-11-02T09:57:00.000-04:00

Happy Halloween from Ben!

2011-10-30T20:32:00.001-04:00

I'm not sure if I mentioned that Ben went to his high school Halloween dance on Friday night. Apparently a group of girls asked him to dance, so he did. Ben transferred to a regular high school in our board in September. It has a deaf/hard of hearing program where the students have some classes on a separate unit and others in the mainstream with interpreters. I just received this message from the head of the program. She sent it to all of his teachers and the principal:

"Ben was our one and only DHH student who showed up to the Halloween dance! His costume was totally awesome! The best! He's got guts! I am so very proud of him! He is one remarkable young man who is displaying his spirit to the fullest."

Silent Sunday

2011-10-30T15:03:00.000-04:00

Book series brings Madi to life

2011-10-29T21:17:00.009-04:00

I LOVED Sarah Leal's first children's book -- So Don't! And See What Happens. She just released a third -- The Cottage Tooth Fairy -- and is working on a fourth. One of the main characters in this series is Madi -- a girl with cerebral palsy who uses a voice device. Madi is based on Sarah's daughter Madi, now 15, who lives with Sarah and her husband Luis in Guelph, Ontario. I asked Sarah why she started this series and why it would be of interest to families of children with disabilities. Here's what she had to say:

I started writing this series when my daughter Madi was little. She had SO MANY appointments and we had to wait in many a waiting room so we would bring a ton of books and read and read and read. After reading the same stories over and over I started to change up the character names to match Madi's friends and family. Then I started to change the stories too. As Madi got older I looked to buy books with a main character with a disability who was hopefully non-verbal -- but had no luck. The only books that I found seemed rather "educational" and that was not what I wanted. I decided that there was a spot for me in the writing world, and that was how I got started writing my books.

All of my stories come from a part of our real life. Then I shape them and sprinkle in some fun. The Cottage Tooth Fairy comes from a real toboggan ride that my husband Luis and Madi took. It resulted in the loss of Madi's first molar and Luis being scolded for not holding on tight enough. LOL! This story has Madi and her fictitious brother Colin finding out what happens when you lose a tooth at the cottage. Childhood hijinks to trick the Tooth Fairy result in a whopper of a problem, and some rather angry cottage wildlife.

My books give an opportunity for a child with a disability to relate to the story without being centred out. Peers can enjoy a story that supports acceptance -- again without being told explicitly.

My books can be shared with peers and educators who are involved in your child's life. Other students may look at their classmate differently when they realize that people with disabilities live lives just like theirs.

One day when Madi was about four a little girl in the park asked me about why Madi uses a wheelchair. I gave my usual response: "Some people are born and need to wear glasses to see. Madi was born and needs to use a wheelchair to get around." The girl said "like a fancy accessory." I just about fell over with laughter. To this little girl the chair was a fancy accessory. Love it! Disability in my stories is an "accessory."

I have sold my books in Canada, the U.S., England, Hong Kong, Australia, Argentina, Dubai, South Africa and New Zealand. I have the best job in the world. My next venture is to get into the school boards and be a guest author. Eventually, perhaps my daughter Madi would like to take this over. It would be amazing for her to go into a class and read to children.

Armadillo update

2011-10-26T20:09:00.001-04:00

Thanks everyone for your wonderful ideas and links.

Alas, I was not able to come up with an armadillo costume. I did call some costume places and Ben and I went to one today in the hopes that they would help us piece something together that could pass as an armadillo.

No luck. We were told that that unusual-looking creature would be a "custom-build" and would require lots of advance preparation.

So, instead, Ben has decided to be a musketeer. He has one of those cool hats (see above) and a burgundy cape, some red gloves and a flintlock pistol replica (I think that's what it's called).

What are your kids wearing??

Armadillo anyone?

2011-10-24T19:26:00.002-04:00

Ben has been 'thinking' on a Halloween costume. It had to be an animal, he said.

Today he decided. At first he told me it was an anteater -- he told me this by finding a Zoboomafu show about anteaters.

Then, just as I was putting out word that I needed help on an anteater costume, he brought me the voice software on his iPad to let me know that it wasn't an anteater after all -- it was an armadillo that he wanted to be.

Even though Halloween is Ben's favourite holiday, I always find myself about a week away from the event in the same situation: in search of an unusual costume. Where on earth do you find an authentic looking armadillo costume -- one with scales that look like armour?

Ideas? Anyone?

There is a Halloween dance at Ben's school this Friday and he wants to go.

No more accidents!

2011-10-24T12:55:00.004-04:00

Many of you remember Tommy Glatzmayer (left) and the book he wrote with his mom Nathalie Wendling: Melanie and Tommy have two pet rats and one syndrome.

Nathalie just sent me this exciting update on her daughter Melanie (right), 11, who has Cornelia de Lange syndrome. For years, Nathalie has tried to toilet train Melanie. This summer it happened. Nathalie tells us how:

Over the summer, I desperately tried to toilet train Melanie -- as I do every summer.

She has not worn a pull-up since 2005, but we needed to bring her to the washroom every two hours. She would have a few void accidents weekly, but most of her bowel movements were accidents. In August, I decided to duct tape a night-time potty training buzzer mechanism to her underwear during the day. She would wear a normal pair of underwear and then the second pair would have the duct-taped mechanism, so it would not touch her skin.

At first, I was very depressed, as the device was ringing all day. I was convinced her brain was not capable of sending the signals. But I decided to leave the mechanism there anyway. It was relieving some stress from my life. I didn't have to force her to go to the washroom -- the buzzer was doing my work. After 15 days, Melanie was completely toilet-trained. Suddenly it was September and back to school.

I tried meeting with the teachers to explain about our success and the buzzer, but no one had time to listen. No one wanted to listen. I was made out to be some kind of crazy mom with a crazy agenda.

The staff continued to bring Melanie to the washroom every two hours and they wouldn't stop. It was confusing her brain and she was having many accidents.

We pulled her out of school at the end of September and set up a meeting. Our team consisted of a psychologist and a speech pathologist with some medical evidence written by a doctor that Melanie was physically capable of knowing when she needed to go to the washroom. Both professionals have known Melanie for over six years and believed she was capable of requesting to go to the washroom

What we discovered was that Melanie was terrified to let people at school know she had to use the bathroom. She didn't know how to interrupt the teacher or interrupt her friends. Melanie can barely communicate, never mind find the confidence to interrupt.

After a few meetings, some professionals from the school board got involved and the board said it would make a plan of action for all staff to follow by the end of October.

We sent Melanie back to school last Monday on the condition that they follow our plan of action until their plan had been formulated. It was so difficult for Melanie. She was so stressed. We rehearsed and rehearsed and rehearsed every single scenario at home. I spoke about fear, friends, teachers. I spoke and spoke and spoke. I wondered if Melanie understood any of it.

I had not slept in two months. I knew this was my last chance of ever training her. The school board could decide that Melanie wasn't ready and order her back to the washroom every two hours. This was it. The time was now. I could smell, feel and taste Melanie's success. I knew she was ready, why would no one believe me?

This was a very important week in Melanie's life. Melanie had to find the courage: the courage she never had before, the courage she did not know she had.

October 17 - Melanie went to the washroom once.

October 18 - Melanie went to the washroom once.

October 19 - Melanie went to the washroom once.

October 20 - Melanie went to the washroom four times.

Ocotber 21 - Melanie went to washroom five times.

Melanie found the courage and she loved it. What a show off! She was so proud. We are so proud.

Is it finally my turn to walk out the front door with no diaper bag? Has that time finally arrived for me? Is it real? Is it really happening?

My advice to other parents? We have tried three different buzzers. The best one is available at Costco pharmacy. It has a rubber tip (this part is taped to underwear). You must order it at pharmacy counter and it is ready for pick-up next day. I would recommend doing this intervention during the summer as the students and staff at school found the buzzer to be very distracting and apparently even psychologically disturbing.

Please learn from our mistakes and schedule a big meeting with all school staff before introducing the buzzer in the class environment. All staff and students need to be properly informed and prepared.

I am convinced we would not have had success without the buzzer. I desperately tried everything for so many years. The buzzer enabled Melanie to make the connection.

We took this picture this morning. The buzzer is kept in a little pouch (cell phone holder). The pouch is pinned to her pants with a large safety pin.

Melanie was very excited to take this picture today. She understands and is proud of her accomplishments.

The Anti-Romantic Child

2011-10-20T12:34:00.000-04:00

An excerpt from this book appeared in Newsweek a few months ago and was blogged about on the Chronicle of Higher Education. Here's what Publisher's Weekly had to say about Priscilla Gilman's new memoir. Have you read it? Louise

The daughter of literary agent Lynn Nesbit and the late theater drama critic Richard Gilman crafts a beautifully sinuous and intensely literary celebration of the exceptional, unconventional child. Her son, Benjamin, was born when she and her academic husband, Richard, were in graduate school at Yale, where she was still working on her dissertation on the Romantic English poet William Wordsworth. As "Benj" grew older and failed to hit the usual milestones of children his age, exhibiting brilliant but "odd" behavior such as an obsession with numbers, aversion to physical affection, fastidiousness, inability to feed himself, and echolalia, Gilman realized these were "uncontrollable manifestations of a disorder," namely hyperlexia. Falsely reassured by their well-intentioned pediatrician, the couple finally sought professional therapists, and after they relocated to Poughkeepsie, N.Y., where both got teaching jobs at Vassar, Benj made marvelous progress in school. Throughout her narrative, Gilman extracts from many of Wordsworth's poems, which comment on innocence and loss and gave Gilman tremendous succor during Benjamin's early development, making for both charming and studious reading. Her thoughtful memoir involves the breakup of her marriage, rejection of an academic career, and move to New York City to work in her mother's literary agency as much as it delves lyrically into the rare, complex mind of the unusual child.

Goodbye mom, hello therapist

2011-10-19T15:14:00.002-04:00

A Ryerson study of 20 mothers of children with autism looks at how mothers sacrifice their roles as parents, spouses, friends and professionals in order to become full-time 'therapists' to their children.

"Parents are talking about this, but it's still not highlighted in the literature," said Dr. Nancy Walton, an associate professor at Ryerson's School of Nursing and ethicist who was speaking at a Bloorview Research Institute presentation yesterday.

Through qualitative interviews with 20 women, most of whom identified themselves as their child's primary therapist, Walton uncovered the following themes:

While professionals tell parents early intervention is key, an autism diagnosis typically meant that publicly-funded therapies were cut off, and the child was wait-listed for services. One mother noted that in order to get her child help at the age of four, he would have had to be diagnosed in utero. Another said that her non-verbal child had been on a wait list for speech since 20 months. He remained high on the list and was about to turn five.

Mothers took on the role of active therapist because publicly-funded therapy was rationed in inconsistent blocks or non-existent and they felt time was running out; they saw their child as a unique individual that they knew best; and through networking they heard about positive results from other parents who delivered most of their child's therapy. A therapist who wasn't able to provide the amount of therapy the child needed would offer to 'train' the parent to do the therapy at home. In addition to therapists, mothers viewed themselves as case managers in co-ordinating their child's team of physicians, specialists and therapists. Fifteen respondents did not work outside the home and a number described therapy as their new 'career.'

In order to deliver a gruelling 48 hours of therapy a week, moms integrated therapy into their everyday life, often dedicating a room in the house to the task. Interaction with their child no longer involved any 'down-time.' Every activity became purposeful and therapeutic, "making it difficult to be a mom," Walton said.

Respondents described their therapy role as more than a full-time job. They felt guilty if they weren't teaching their child every waking hour. The moms reported exhaustion and an inability to fulfill their role as spouses and to provide any one-on-one time to their other children. The respondents had no social life outside the home and considered their child's therapy their work life.

On a positive note, doing therapy often gave the moms the first effective way to interact with their child and when their child made progress, they felt rewarded.

The respondents identified the lack of resources to help mothers address exhaustion and take care of themselves.

They felt decisions about services and cut-off dates were arbitrary and ad-hoc. Walton, after analyzing the data, expressed concern for vulnerable mothers of children with autism who were new Canadians, didn't speak the language, had low literacy, or were single parents or isolated.

Dr. Evdokia Anagnostou, a neurologist and clinician scientist who focuses on autism at Holland Bloorview, asked whose mandate it was to protect the mental health of parents given the high levels of stress.

Walton said that the mandate may fall within our commitment to delivering family-centred care.

Notes from a dragon mom

2011-10-18T10:47:00.000-04:00

Don't miss this piece about parenting a child with a terminal illness in the New York Times:

Notes from a dragon mom

"No matter what we do for Ronan — choose organic or non-organic food; cloth diapers or disposable; attachment parenting or sleep training — he will die. All the decisions that once mattered so much, don’t."

Listen to the children, ethicist says

2011-10-18T10:29:00.003-04:00

We underestimate the ability of even young children to participate in health-care decisions and need to recognize them as part of the decision-making team with their own preferences, said Franco Carnevale, a Montreal nurse, psychologist and clinical ethicist speaking at the 2011 Canadian Association of Pediatric Health Centres Annual Conference yesterday in Ottawa.

“The child has not been on the radar as a recognized decision-making agent,” Carnevale said. “I’d like to see a paradigm shift from adults making decisions about children as moral objects to seeing children as moral subjects with their own insights and perspectives on what’s right and wrong, what’s just and unjust, and what’s good and bad.”

While he doesn’t view children as independent decision makers he says physicians and parents have an obligation to provide them with information adapted to their understanding in an attempt to solicit their “willfull cooperation” in a treatment plan.

“We have a tendency to underestimate children’s capacities to participate in decisions,” Carnevale said. “Those decision-making abilities can develop better in children if we engage them earlier on, and children appreciate having a say about their treatment plan.”

Carnevale said professionals tend to overestimate or underestimate the burden of a particular treatment for youth. For example, he spoke about a 4 1/2 year old girl on long-term ventilation who viewed her pap machine in the same way as an adult might view eyeglasses. “She called it ‘her pap’ and she likes it and is happy it made her feel better.”

On the other hand, he spoke of a 15-year-old teen who opposed having a defibrillation device implanted in his chest because the resulting bump would harm his body image.

By tailoring information to different levels of understanding and listening to the child’s wishes, we communicate an “underlying respect for the child’s dignity,” Carnevale said.

This is important whether or not the child has a developmental disability or can verbalize their wishes, he said.

Carnevale was speaking during a town hall that was moderated by Dr. Brian Goldman, host of the CBC show White Coat, Black Art.

Dr. Margaret Lawson, a pediatric endocrinologist at the Children’s Hospital of Eastern Ontario, echoed the importance of children and parents to healthcare decision-making and said “families are the most underutilized resource."

She spoke of a shared decision-making model in which two-way communication occurs between two experts: the doctor and the family. “You need expert knowledge about the condition... and you need to know how the family feels about risk and what their preferences and values are.

Lawson said a decision tool developed at CHEO “helps take families through the process of making an informed decision that is consistent with the family’s values.”

This includes identifying treatment options, benefits and harms, and the family’s values, including which benefits and harms matter the most to them.

Dr. Lawson emphasized that patient engagement is not just ‘parent’ engagement and the child’s voice is essential.

Explaining disability

2011-10-14T11:55:00.000-04:00

I hope to include resources on explaining your child's disability in the January issue of BLOOM magazine.

I'm interested in any great articles you've read on this topic, or websites that can help parents come up with a simple, upbeat description tailored to different ages.

Please post any resources you recommend we share with readers.

Thanks! Louise

Homework!

2011-10-13T14:57:00.002-04:00

This and that

2011-10-12T13:47:00.000-04:00

Ben's voice has changed!

We had a friend over Sunday and she pointed out that it had dropped -- his high-pitched giggles are no longer high-pitched. I think we'd noticed this but not acknowledged it. When he came home from camp, he had a bad cold so his voice was husky. But then the cold went away and his voice continued to be deeper, lower.

Here are some interesting articles. Louise

Stutterer speaks up in class; His professor says keep quiet

Disabled men at higher risk of sexual abuse than non-disabled men

Has Down syndrome hurt us?

'Don't change'

2011-10-10T20:18:00.004-04:00

I read this quote this morning and thought it fit well with some of the themes discussed in Under the hero's cape and Outcomes: How to let go.

"Don't change. Change is impossible, and even if it were possible, it is undesirable. Stay as you are. Love yourself as you are. And change, if it is at all possible, will take place by itself when and if it wants. Leave yourselves alone. The only growth-promoting change is that which comes from self-acceptance." Anthony de Mello, Jesuit priest

Happy Canadian Thanksgiving and American Columbus Day! Louise

When nothing can mean everything

2011-10-08T16:12:00.001-04:00

Check out this great piece on Motherlode, which seems written in response to some of the discussion we had to the posts Under the hero's cape and Outcomes: How to let go.

Here's how it begins:

"I would do anything to help my child." Who hasn't said that and followed up their words with actions? But the parents of special needs children get to prove it on what seems to be a daily basis, since there is always a new therapy, medication, school or tutoring option being presented to us. And we often leap before we look. Even when a program doesn't sound quite right, hey, like the lottery, you never know. What if this one thing you choose not to try is "it?" Aside from fearing that, we get afraid of being branded as the mother who doesn't care enough to go through the wringer as well as her life savings.

Meet Mitchell

2011-10-06T14:38:00.003-04:00

Here is a second guest blog from Lori Beesley, who sits on Holland Bloorview’s family advisory committee. Every year Lori goes into her son Mitchell's school class to educate the students about Fragile X. She shares her speech below. I love the way she describes things about Fragile X and Mitchell (above) in a way that any child could relate to. The day she gives her talk, a note is sent home to parents, including Lori's speech and her phone number. "After the first year, I was asked to speak with all the students in the school, so I moved from class to class," Lori says. "As the kids got older, their questions went from things like 'Can I catch Fragile X?' to 'Where will Mitchell live when he's all grown up?' and 'Will he ever be able to get married?'"

Meet Mitchell

Hi there, my name is Lori Beesley. I came here today to talk to you about something called Fragile X syndrome. It is the most common cause of inherited mental impairment in the whole world. In fact, there are thousands of boys and girls everywhere in the world that have Fragile X. To tell you the truth, I had never even heard of Fragile X until many years ago. Then a doctor told us that our son Mitchell had Fragile X syndrome. I know that some of you already know who Mitchell is, because you have been in his class, or from daycare. I’m here to tell you a little about Mitchell, Fragile X, and how it affects our family.

When someone has Fragile X, it means that before they were born, a tiny part inside their brain didn’t grow the same way that most people’s do. Their brain is the same shape and size as everyone else’s, there is just a little, tiny part inside the brain that is different. That tiny part makes them act differently and learn differently.

Have you ever been in class and the teacher is explaining something, it might be science or math or spelling, and you just don’t get it? You are trying to understand and you just can’t? Put up your hand if that’s ever happened to you. I know it used to happen to me too. You know what I would do? I would ask someone else to explain it to me, a friend or another teacher or my mom or dad. When that new person explained it to me, I would get it. I’ll bet that you know what I mean. The reason that you “get it” is because that other person explained it in a different way, and another part of your brain understood.

People with Fragile X can have a really hard time learning things in the classroom. Sometimes they have to learn the same thing over and over, explained to them in lots of different ways before they “get it." When we were teaching Mitchell what a dog was, we had a book with a picture of a dog and we’d point to it and say “dog." After a while, Mitchell knew that picture was a dog. Then, one day we were at the store and there was a dog tied up. I pointed to it and said “dog." Well, Mitchell looked at me like I was CRAZY.

I knew that he thought that “dog” meant the picture in the book. This dog in the store was brown. The one in the book was black and white. This dog said “woof” and the one in the book didn’t say anything. This dog moved and wagged his tail, and the one in the book always stayed in the same spot.

We decided that we had better try something else with the picture in the book. Next time, when we looked at the book, we said “woof.” Then Mitchell learned that dogs make a noise. Every time we saw a real dog, we said “woof” and one day Mitchell said “dog.” He finally got it. It took Mitchell a long time to learn about dogs, and we had to figure out a way to explain it to him so he could “get it.”.Now he knows and understands all about dogs, and lots of other animals. Sometimes he learns things faster, sometimes slower, just like all of you.

Fragile X makes people act differently too. Their brain lets in too much information all at the same time, which can make them upset. I’ll try to tell you what I mean. Put up your hand if you like to watch TV. Have you ever been watching TV all alone, when all of a sudden your brother or sister starts talking to you, then your mom tells you to do something, then your dad starts up the lawn mower outside, then the phone rings and ALL you want to do is just watch TV? How does that make you feel?

Pretty upset? Kind of mad? Does it make you want to yell at everything? You know what? People with Fragile X feel that way a LOT of the time.

Right now I know that you are all sitting here and listening to me. If you have Fragile X, your brain has trouble focusing on one thing. That means a student with Fragile X might be smelling the floor cleaner, watching someone fidget, feeling the tag in the back of their shirt and trying to pay attention to me all at the same time. And that makes them feel the way you do when you get upset, trying to watch TV. T

Someone with Fragile X can be trying so hard to figure out how to handle all that stuff that's happening to them at once, that they forget how to act appropriately, or the way that they should. They might flap their hands like this, stand up when they should be sitting, or yell out something when they should be quiet. It is their way of dealing with the way they are feeling. Sometimes it can make them feel better, and then sometimes it can make them more upset. Sometimes Mitchell even gets upset about something that happened to him a little while ago, but it’s just sinking in now. That is part of the mystery of living with Mitchell. We have to try to help him learn how to handle things that upset him, in a way that can help him feel better next time.

I know that some of you have asked me why Mitchell won’t say "Hi" to you if you see him outside of school, maybe in the park at the end of our street or up at the plaza. There is a very good explanation for that. I want everyone to think of someone famous right now ---your hero. Maybe a sports hero, a movie or TV star, a singer.

Now picture that tonight you are sitting having dinner with your family and the doorbell rings. You answer the door and there is a huge stretch limo parked outside and the person you were just thinking of is standing right in front of you, saying "Hello!" Chances are you would not say “Hi, come on in.”Your brain would be so busy thinking “Why are they here? How did they get here? OH MY GOODNESS!”

The person would still be standing in front of you and you are still not saying anything. Well, to Mitchell, all of you are HIS heroes. When he sees you outside of school, he’s not expecting it and so it throws him a curve. Kind of like seeing your teacher at the grocery store -- you might be feel weird and awkward. What you don’t know is that a minute after you say "Hi" to Mitchell, he usually says "Hi" back to you, but you miss it. That’s why his dad or I say "Hi" for him. We know he really wants to, he's just overwhelmed at that moment.

The last thing I want to talk to you about is YOU! Mitchell’s dad and I want to tell you that we feel really lucky that Mitchell goes to a school where so many of you know him and try to help him. You are all the best teachers that Mitchell has. He will watch you, and see how you do things, then he will know how to do those same things. If Mitchell is doing something that he shouldn’t be, or acting silly, you can all help him learn the right way to do it, or a better way to behave. He will listen to you.

Even though Mitchell’s brain may not work in the same way as yours, his HEART does. He likes having lots of friends, to play and to laugh with, just like all of you. He likes to ride his bike and scooter, watch videos, and go to the park, just like all of you. He has his good days and his bad days, just like all of you. It’s nice to know that he has people here that care about him and help him through the bad days and laugh with him on the good days. Mitchell and everyone else who has Fragile X have special needs, but we know that as long as Mitchell has people like you around him, he will have a good life! Thank you.

His hero

2011-10-06T12:00:00.001-04:00

This just in from Ben's English teacher. He is in an English class with other kids who are deaf and hard of hearing:

"Ben is doing really well in English class. He's reading the same material as the rest of the students. I gave him a bit of homework which he rolled his eyes at!!! I asked him if he could name 3 people that are his heroes. He said right off the bat that his dad is his hero! He is to give 3 reasons why he thinks each person is a hero.

I love Ben!

'I don't remember when I realized I was different'

2011-10-05T14:36:00.002-04:00

'I don't remember when I realized I was different'
By James Shea

I sat in the bleachers at the Dean Dome in Chapel Hill, N.C. last year. Erskine Bowles, the former president of the University of North Carolina and a presidential appointee to the National Commission on Fiscal Responsibility and Reform, gave the keynote address. I scanned the rafters and saw the multiple national championship banners.

“What a journey,” I thought to myself at age 40. “I have come so far.”

I was raised in a small farming community in Oregon and was born with one arm. I was in Chapel Hill for the annual North Carolina Press Association awards and surrounded by fellow newspaper professionals. I won first place in the “Best Breaking News” category and was at the event to receive the award. I had beat out dozens of other newspapers in the state and who knows how many reporters.

It was not my first. I have won a dozen writing awards. Some were as part of a team and others as an individual. I did this all as a disabled journalist, something that makes me proud.

The journey was not easy and required hard work and dedication. I had so many people along the way who doubted my abilities and even thought being disabled somehow made me stupid. Please! There is no relationship between my disability and my brain. I know that I am not the smartest person in the world, but I’m not dumb either. I have two bachelor’s degrees from the University of Oregon and survived 10 years in a dying profession – print journalism.

It didn’t start off so well. I barely graduated high school and have struggled with depression as an adult. I have screamed at the world, pissed at the cards I was dealt. But nothing will change my situation.

I am disabled, and I will be that way as long as God allows me to walk this earth.

I don’t remember when I realized that I was different. While I have one arm, the disability goes much deeper. My entire right shoulder never really formed in my mother’s womb. I have a small finger that protrudes from my partially formed shoulder. Anyone who looks at me sees my disability. It’s rather obvious. I see it in people’s eyes, especially young children. They stare at me in the grocery store or the park.

“Look mommy, that man has one arm,” the child often says.

It makes me feel uncomfortable even to this day, but I have come to terms with that. I will not hide from the world. I have a right to earn a living and find happiness just like anyone else. I just have to work a little harder.

I never really planned to be a journalist or a writer. It just happened. I did a few freelance articles after college and took a job at a small community newspaper in Colorado. I was not very good at first. I mostly covered city council and county commissioners. My editors were patient with me. They taught me better ways to tell a story and how to dig deeper into a subject. And through that process, I had to deal with the awkwardness of being a disabled journalist. But I adapted. I had to place my notepad on my knee, when others held it with their hand. I never let the odd looks and uncomfortable situations get in the way. I had a job to do.

When I was young, I told myself, “I’m normal.” This story worked until puberty. Then, my friends got girlfriends and kissed them for the first time. I know girls, especially teenage girls, had a problem with my disability. I understand. That didn’t make it easier. But my junior year in high school, I met a young woman who looked past my disability and dug herself deep into my heart. We dated throughout high school and are still friends today. As I got older, the dating became easier as women matured, and I became more confident in my own skin.

For my parents, it was hard. They saw my struggles and wanted to help.

As a reaction, they often sheltered me from the consequences of my actions. I did something dumb, and my parents, especially my mom, would make excuses. I went unpunished.

If I can give parents of a disabled child any advice, it’s this – don’t be over-protective. You need to be as hard on them as you are on any child. Yes, growing up with a disability is hard. I won't say it's not. But don’t make excuses. A child is a child. He or she makes bad choices, and they must understand those actions have consequences.

A couple of years ago, I wrote a memoir about my experiences as a disabled person and a dog who helped me through a tough period in my early 20s. I had several New York agents read the manuscript, but none chose to represent me. My friends who read the manuscript pressed me to find a home for the manuscript. I recently published the manuscript, Plucking Wolf Fur, as an ebook on Amazon. I want parents of disabled children to learn from my experiences. Life can be bad, you can make bad choices, but in the end you can find peace and your place in the world.

James Michael Shea is an award winning-journalist and is the author of Plucking Wolf Fur: A story of one arm, one dog, and an American family. He blogs about his book and media convergence at http://www.jamesmichaelshea.com/. He can be reached at jamesmichaelshea@gmail.com.

Outcomes: How to let go?

2011-10-03T15:16:00.002-04:00

An interesting dialogue follows Friday's post about Jennifer Johannesen's book: No Ordinary Boy.

Jennifer notes that her pursuit "of optimal ways of being in the world" for son Owen (that pursuit that I believe every parent undertakes to give their child the richest life possible) was worthwhile and she has few regrets because of it.

But she notes that she could have approached intervention in a healthier way, one that didn't consume and exhaust her and lead to burn out.

"I would have had a healthier/happier time of things if I wasn't attached to outcomes," she says. "And if I'd felt a welcome place to voice the futility I was feeling."

I've found it hard to come to terms with the fact that I can't control the outcome of my son's life; that I may invest innumerable resources in therapy, equipment, life opportunities and one-on-one time but "results," if any, may not be related to the efforts I put in.

I've been told that I need to measure myself on what I put in (e.g. did I make the best possible effort to promote Ben's speech?) -- not what comes out (he never acquired speech).

That's not a common way of thinking in our culture.

A popular platitude is that if you work hard, anything is possible, and that we get what we deserve.

Therapy is increasingly goal-oriented (with our commitment to evidence-based care). For parents whose children don't meet the hoped-for goals, it can seem like a set up for failure.

Do you believe that it's possible to live in our culture and rehab system and not be devastated when our children don't make the progress we hope for?

I wonder how we can change our definition and understanding of rehab -- and our common concept of success -- so that it isn't so black and white, so that there's more room for grey?

How could rehab professionals counsel parents so that they don't fall into the trap of 'more therapy is better' when their child isn't making any meaningful progress?

And finally, how could rehab professionals better 'hear' parents like Jennifer, who says in her book: "I want to cringe, cry, yell when I think of my 30-something self. I worked so hard, and yet underneath it all I felt the futility...I could pick just one thing of the 50 and do only that one thing for 10 years and it would still never be done. It's all too much, and it will never be enough."

How can we, as parents, better speak up?

Under the 'hero's' cape

2011-09-30T11:54:00.017-04:00

Two days ago Jennifer Johannesen brought me a copy of her book. It was a shiny paperback called No Ordinary Boy, about her life with son Owen, who had multiple disabilities and died almost a year ago at age 12.

Today, my copy's cover springs open, the pages are dog-eared and there are traces of food and bath water dispersed throughout.

No Ordinary Boy explores themes that will resonate with parents of children with severe disabilities and educate professionals and those who have never lived this reality.

It will enable readers to understand how parents can experience their child as magical, yet struggle with a crushing hopelessness when years of rehab efforts don't yield results and therapists (and a 'you can do it!' culture) don't let up.

"What if I know we'll never get there," she writes of efforts to find a communication system that works for Owen. "What if I'm certain? Who would I dare tell? Who would listen? And who would dare agree? Are we all supposed to die trying? And why do we always have to be working on something? Is 'hope' the only thing that matters?"

We hear about the herculean efforts Jennifer goes to to feed Owen, who is at risk of aspiration, orally: "Food and thickened fluid had to be given slowly and methodically. At the last assessment before I finally threw in the towel, the instruction was to feed 1/4 teaspoon of food every 30 seconds. I calculated how long it would take to feed Owen his recommended calories and fluids: about five hours a day."

Elaborate, drawn-out feeding sessions rule the day, to the point that Jennifer's younger toddler Angus protests when he sees the equipment come out. "...at that moment, I felt helpless," she writes. "And hopeless. I was frustrated that I couldn't provide for either of my children properly."

There are years of relentless attemps to get Owen -- who is profoundly deaf, unable to use his hands and struggles with uncontrolled movement -- to express himself.

"The discussions always went around and around. I was offered options at every turn but they felt futile. I knew what I was up against. Every year, a new suggestion, a new hope.

When Owen was three: "He can use a voice-output device to communicate."

But he can't hear.

When Owen was four: "He needs to first learn cause-and-effect; learn how to use switches."

Yes, learn. Goals, checklists, spreadsheets, Time of Day/Number of Opportunities/Number of Successes. The expensive adapted toys. The battery-interrupter to adapt regular toys. The computer arranged through the Assistive Devices Program specifically for Owen's training...We tried. We really did.

When Owen was five: "It's okay if he can't hear. He just needs to know that if he pushes the button, someone will respond."

But his caregivers can't hear. I hire only deaf people. They're the only ones who sign well enough. They're the only ones who can offer consistent language input.

When Owen was six: "Then we'll attach a light signal to the switch, so they can see when he wants something."

But Owen can't see it. His head is always craned around, his chair always tilted back.

When Owen was seven. "Then we'll attach a buzzer, so he can feel when he's pushed the button."

It was enough to drive a sane woman mad.

One of the most moving and insightful parts of the book -- to me -- is a letter Jennifer writes to a trusted speech therapist, explaining why she's given up on augmentative communication. "My apparent abandonment of AAC has nothing to do with my acceptance of Owen himself -- it's more about my exhaustion and what I'm seeing as futility," she says. "I do wish he could communicate and I wish I could give that to him -- but at what cost?"

Jennifer connects the goal-setting of rehab professionals to a workplace phenomenon called Fake Work. "Fake, because it creates the illusion of productivity when the activities actually don't contribute to the production of anything real or meaningful....Institutions and therapists like disabled kids and their families to be working on stuff, to be improving, to have goals and accomplishments. To be all they can be! This persistent striving can create an environment where Fake Work is prevalent and even encouraged."

It's painful -- and somewhat humorous -- to read the lengths to which this parent goes to have her son participate (I'm sure our readers will relate). At one of Owen's birthdays, Jennifer hooks up a hairdryer to a switch box so he can 'blow' out his candles by hitting the switch with his foot. Only things don't go as planned!

There are so many places in this book where I said: "Yes. She gets it. She had the same feelings, the same thoughts."

An example is when she visits a segregated school for Owen, the only schooling option she's given. "I can't describe exactly what was wrong or why throughout the whole tour I was holding back tears" she writes. "...Beyond the buzz, I sensed an environment devoid of connection, authenticity and learning. The place looked like a school but it didn't feel like one; it felt like a facility in which employees looked after disabled kids, more institutional and soulless than any other place Owen and I had been."

And although I've known Jennifer for at least eight years, I wondered: "Why didn't I know?"

To therapists (and I assume even other parents, like me) "I would always wear my shining-hero cape," she writes.

We get the sense that putting on this front of supermom who 'has it all together' is expected of us -- by professionals, family, friends. Certainly we, as parents, don't want people to interpret our lives as tragic. "There's nowhere to go with the reality of hopelessness," Jennifer told me this morning.

Jennifer covers all the bases in her book. She talks about the impact of a child's disability on marriage.

We hear about how she spent her nights ensuring Owen had the continual pressure his body needed to calm itself. "I found a way to keep him tucked into a ball without having to sit up: spooning." This allowed Owen some sleep, but not his mother, who was occupied in a psueudo-game of Twister that left her with chronic pain.

There are surgeries, a baclofen pump implanted to reduce spasticity that's recalled, a meeting with Holland Bloorview's bioethicist about decision-making for someone so vulnerable and dependent.

When Jennifer and her husband choose not to pursue deep-brain stimulation, which is held out as a way of calming Owen's uncontrolled movements, Jennifer feels a sense of exhiliration. "There was nothing left to hold out for, no more straws at which to grasp, no more hope for improvement, no theories to explore, no further experiments, no more trials. Finally, Owen was free to just be."

At the end of the day No Ordinary Boy is a love story --- to Owen, and to brother Angus, to whom the book is dedicated, and to all of us families out here struggling to run what feels like a parenting marathon.

It is candid, thoughtful, philosophical, important. Jennifer weaves her narrative around excerpts from hospital and rehab reports that juxtapose Owen's 'clinical' picture with that of his mother's lens.

You can buy No Ordinary Boy at http://noordinaryboy.com/buy/ or borrow it from Holland Bloorview's library (416-425-6220, ext. 3713).

Education: Is it 'earned' or a right?

2011-09-29T12:22:00.002-04:00

On Monday I heard a fascinating CBC interview with Chris Mburu (left), a lawyer with the United Nations Human Rights Agency.

Chris is the focus of a documentary film -- A Small Act -- about how a $15-a-month sponsorship from Swedish teacher Hilde Back enabled him -- a young Kenyan living in a mud house -- to go to school and eventually Harvard. Chris decides to find the stranger who changed his life and creates a scholarship program in her name: The Hilde Back Education Fund. The fund provides scholarships to the brightest students from poor communities in Kenya. A Small Act follows top students in Mukubu Primary School competing for a scholarship.

It's a story about how one small act of generosity can have a ripple effect, changing lives. In the CBC interview, Chris talks about how he calls on scholarship recipients to go back to their communities and 'lift them up' with their own charitable projects.

But as I was listening to this fascinating story, I couldn't help wondering why only the brightest students in poor communities were candidates for scholarships.

The fund says it promotes access to education as a fundamental human right. But apparently that right hinges on intellect -- which many would argue is something a person is born with.

If the fund aims to focus on those who are disadvantaged, why does it only recognize and reward the most exceptional, the students who are most advantaged academically to begin with?

Such a thought would never have entered my mind before I had a son with an intellectual disability. The brightest students 'deserve' to be rewarded with scholarships, I would have thought. But now I wonder how much of being smart is genetic and 'gifted' to someone at birth? Is it true that the most brilliant students are the ones who work the hardest, and have somehow 'earned' their intelligence?

I wonder about the Kenyan students who struggle to learn, despite best efforts?

What about those who have intellectual disabilities? I haven't seen the movie, but I imagine they aren't educated in the same classes as the ones vying for scholarships.

When the scholarship students return to their communities to "lift them up" -- will it just be elite students who benefit? At what point will access to good education be for every Kenyan and every Canadian -- regardless of IQ?

School update

2011-09-27T17:18:00.000-04:00

Ben continues to enjoy his school. His assistant was away yesterday, so one of ours went in. This is what she had to say:

It was great to see him parade though the high school crowd with a smile on his face and see how proud he was in his body language. I think there is some further adapting that needs to happen for participation in all classes, but I know he is being challenged and enjoys where he is. He enjoys being challenged, independent and participating in class.

And from the principal: It has been quite remarkable to see how Ben has adjusted.

'Perfect' or 'abnormal:' Which one is your baby?

2011-09-27T11:54:00.006-04:00

'Perfect' or 'abnormal:' Which one is your baby?
By Louise Kinross

It all began so simply.

I was a couple of months pregnant with my first child. My obstetrician asked if I wanted maternal serum screening. I knew this blood test (called alpha-fetoprotein or AFP for short) detected risk for Down syndrome in a fetus. I also knew it was known for false-positives.

I had never seriously thought about prenatal genetic testing. "Can you ask me again so I can think about it?" I said.

A couple of weeks later I went for routine blood tests and was surprised to see the AFP ticked off on the requisition.

Why hadn't the doctor asked me if I wanted this test?

I was angry.

But I was a healthy 30-year-old woman and I was here at the lab giving blood anyway. What could it hurt?

Two weeks went by and my sister-in-law—a physician—reassured me that if there was a problem I would have heard by now.

The next day I picked up a voice mail from my doctor: “You have an increased risk of having a Down syndrome baby and need to get down to the hospital tomorrow for counselling."

My heart sped up. Was something wrong with my baby?

D'Arcy and I went to the hospital clinic. The genetics counsellor looked fresh out of college, with a large textbook open on her desk. She said I had an elevated level of AFP which gave me a 1 in 200 chance of having a child with Down syndrome, instead of the regular odds of 1 in 400 for a woman my age.

The numbers meant nothing to me.

I could have an amniocentesis to confirm or rule out the diagnosis, the counsellor said—but the procedure came with a 1 in 200 risk of miscarrying the baby.

I had the same odds of having a baby with Down syndrome as losing the baby from the amnio test! I didn't want to lose this baby, which was already moving inside me.

The “counsellor” part of genetics counsellor proved a misnomer. There was no discussion about our values, what parenting meant to us, or how we felt about screening for and aborting a fetus with genetic disabilities. Other than a recounting of the dry statistics, there was no discussion at all.

If I wanted the amnio, I had to have it the next day, the counsellor said; I was at the tail end of when they conducted terminations.

D'Arcy and I wanted this baby.

How would I make a decision? I couldn't make a decision, I told the counsellor.

She gave us two pamphlets. One had a scant, two-paragraph description of Down syndrome on it. It described the condition in stark medical terms, listing one "defect" after another. It ended with an odd sentence about how Down syndrome babies could also be happy and lovable—as if clarification was needed that these children were, in fact, human.

The other—a pink brochure—was about termination. What exactly was it? It was a “mini-labour,” the pamphlet said, making it sound as inconsequential as a manicure. Nowhere on the pamphlet did it describe termination as abortion, and nowhere did it state the method at 16 weeks.

I didn't know it at the time, but there's nothing “mini” about a termination of a four-month-old fetus. The fetus' heartbeat is stopped by injection, regular labour is induced and can go on for hours, and a fully-formed, dead fetus is delivered (parents often have hand and footprints taken as a memento).

When I couldn't make a decision about whether to have the amnio test, the genetics counsellor suggested I speak to an obstetrician who would counsel me.

“Look,” said the grey-haired man in a white coat. “If you have an (amnio-induced) miscarriage you'll be depressed, but then you'll get pregnant again and have a normal baby. But,” he began to squawk, eyes popping and mouth twisting, “if you have a Down syndrome baby, that'll be a burden you live with for the rest of your life!”

I cowered in my chair like a child.

We left the hospital in a vacuum filled by the two-paragraph medical description of Down syndrome, the obstetrician's tirade, and the knowledge that the deadline for the amnio loomed the next day.

I didn't search out more information when we got home. I was full of moral angst and indecision but it didn't seem to be the kind of thing you talked about. Oddly, I didn't jump on the computer and research everything there was to know about Down syndrome.

I had little firsthand experience with disability to draw on. Kids with intellectual disabilities didn't go to neighbourhood schools when I grew up. I remembered Bobby, the oldest of six children in a family that lived on a street behind our house. Bobby had Down syndrome and was dropped off in a station wagon from a sheltered workshop in the afternoon. He always ran, head down, into the house. Even as a child, I sensed that his dropped head signalled something bad, something sad or shameful.

I had been brought up with a sense of the value of all human life and with a wariness of medical intervention.

However, it appeared that this was an outdated way of thinking. My therapist told me she would abort if she was carrying a child with Down syndrome. “Life is hard enough when you have your wits about you,” she said.

Of course at this point I hoped it was all a mistake and I would never be faced with making a decision.

I had the test, not having a clue what I would do if it came back positive.

For the next week, I was gripped with anxiety. I would sit, holding my belly, knowing that at a gut level, the idea of aborting a child with a genetic flaw wasn't compatible with my values. It didn't feel right. Every fibre of my body was opposed to judging the life inside of me as unacceptable and needing to be expelled. If I couldn't accept this baby—a part of me, and entrusted to my protection—how could I accept myself?

But the doctor's voice echoed in my mind: the responsible thing to do was to abort this "burden." I pictured myself walking into the hospital, suitcase in hand, emotions shut down.

My husband D'Arcy said he would support whatever I decided, but mainly he chose to believe that everything would come back fine.

And it did.

We were elated to receive a phone call that the amnio result was in and it was “normal.”

I didn't realize that the amnio, at the time, only tested for a certain number of major genetic conditions. Because the limits of the test hadn't been explained to me, I interpreted the result of normal—which also wasn't explained to me—to mean that my child was normal (whatever that means!). With the full information that the amnio doesn't test for a host of rare genetic conditions, I don't know if I would have taken it.

Having received a clean bill of health from the gold standard of prenatal testing, it was a surprise when we were told shortly after Ben's birth that he had a constellation of symptoms that indicated a chromosome problem.

"But I had a normal amnio?" I questioned. 'How could that be?"

I soon learned that I wasn't the only one with the perception that amniocentesis was infallible. Professionals and lay folk alike were befuddled that I could have both a normal amnio and a child with a genetic condition.

D'Arcy and I had always planned on having at least three children, and we wanted them to be close in age.

When Ben was about seven months old, I began thinking about when I would try to get pregnant again—in the new year, I thought, when Ben was about a year old.

I went to see my family doctor and was surprised when she tried to talk me out of getting pregnant again so soon. I interpreted her response as a negative reflection on Ben: why would we want to take on another child when we already had our hands full with a child with a genetic diagnosis?

That got my back up.

I didn't want Ben's condition to put limits on our dreams. I didn't want to make having another child "conditional” on Ben's progress. That wouldn't be fair to him or to us.

But the thought of pregnancy was now filled with anxiety and trepidation: Would our second child be born with medical problems or disabilities? What if our second child had Langer-Giedion Syndrome?

We were told the likelihood was less than 1 per cent because Ben's genetic deletion was random or spontaneous and not related to a change D'Arcy and I carried. In fact, shortly after Ben's disorder was diagnosed, a genetics counsellor enthused: “You have every chance of having a perfect baby—next time!”

But numbers meant nothing to us.

One day while I was agonizing over this, D'Arcy turned to me and said: "Louise, I love Ben. If we were to have another Ben, I would be ecstatic."

That was a turning point.

I became pregnant again when Ben was 18 months old, at age 31. Amnio wasn't available to moms of my age, but because we already had one child with a genetic condition, it was offered.

To say I was conflicted was an understatement.

The first time around it plagued my pregnancy with fear. Now, as the mother of a dearly loved child with a genetic condition, I couldn't imagine aborting a child with a similar condition. What would that say about the value I placed on my son Ben's life? How would I ever look at Ben again, knowing I had stopped the heartbeat of another fetus like him—because it didn't "measure up."

On the other hand, the fact that we were being offered the testing seemed to imply it was the medically appropriate or responsible thing to do. And an unfortunate corollary of that, which soon entered my mind, was that if we didn't have the testing, people would think we had 'chosen' to have a child with a disability—or that we had somehow caused the disability or failed to prevent it (even though prevention in this case meant eliminating the child): “They already have one child with disabilities. How could they have another?”

It seemed guilt would be my companion, no matter which course of action I took.

As I wrestled with whether to have the test or not, I also tried to predict what it would be like to have two children with disabilities (I've since learned that we're bad at predicting our ability to cope with a situation).

I sobbed to a friend that I didn't think I could handle the emotions of having two children with disabilities -- which I pictured as the grief, fear and anxiety associated with Ben—times 2.

But I believe it was more that I didn't think I could handle the stigma—the self-consciousness of feeling that others were looking at my kids and judging them as less than whole.

One of the greatest sorrows we experienced with Ben was others not delighting in him the way we did. A joy of parenting is seeing your child bring happiness to others: it's painful when people focus on the disability instead and feel sorry for you.

Ironically, the obstetrician who made his bias to terminate clear when I had an amnio with Ben, was the same obstetrician I was sent to for prenatal counselling with my second pregnancy.

When I appeared at his door, he looked up from my chart with annoyance and said: "Why are you here? We don't offer amniocentesis to women at age 31."

His entire demeanor softened, however, when I told him I already had a child with a genetic condition.

He paged through my chart to find the letter from my genetics counsellor outlining Ben's genetic condition and its symptoms.

Suddenly, he understood completely, he said "why you would want to do everything in your power to prevent having another abnormal baby."

We were back in the black and white land of perfect and imperfect babies, normal and abnormal babies.

The obstetrician emphatically supported my having an amniocentesis and I went along with him. I was young and lacked the confidence to do what I felt was right—regardless of what others thought.

The day of the test, I was an emotional wreck. Everything inside of me was screaming "no, no, no"— don’t touch my baby. But my fear of judgment should I not test and give birth to a child with disabilities was greater.

My first amnio with Ben had been painless. When the doctor inserted the long needle into my lower abdomen with Lucy, I felt acute, shooting pain and I struggled to lie still. How had inserting a needle into a pregnant women's stomach while you watched the baby on ultrasound—praying it wouldn’t get hit—become a normal part of pregnancy? It was so unnatural, so foreign. I felt victimized.

Prenatal testing has transformed pregnancy from a time of joy and hope to one of dread. Will your baby pass the test? The focus is on weeding out and eliminating 'wrongful' life. It's based on a belief in the power of technology to eradicate human pain—that life can be emotionally and physically pain-free if we get rid of certain health and disabling conditions. But getting rid of them doesn't mean preventing them, it means eliminating the children who carry them. And can a 'good life' be defined by health and intellect alone?

When Lucy's amnio came back “normal,” we were somewhat relieved, but it didn't quell our anxiety. We had had a normal amnio with Ben. Near the end of the pregnancy, the obstetrician said Lucy wasn't growing properly—she was smaller than expected for her age. I had to go for special high-tech ultrasounds every couple of days at the hospital. I began to fear that like Ben, Lucy had a growth problem. “Could it be a genetic condition,” I asked the obstetrician?

“No,” he said. “You had a normal amnio.”

“Exactly,” I said, reminding him that an amnio didn't detect the genetic deletion in my son.

Photo above is of Ben's feet at three days old. The geneticist thought they were unusually wrinkly and a photo of his feet—and his characteristic facial features—were ordered. Those are D'Arcy's hands holding his feet, and it makes me smile to remember that Ben had already stolen our hearts.

Visit a new parenting resource online!

2011-09-26T16:24:00.010-04:00

For the last year I've been seconded to Holland Bloorview's Family Resource Centre to help better integrate BLOOM resources with child disability information in the resource centre.

Holland Bloorview's new online Family Resource Centre brings together parent and professional advice, community resources, Holland Bloorview programs and BLOOM stories organized by topic.

Visit the Family Resource Centre and click on any of these topics under the blue Resource Centre tab at the left:

Parenting

Fun

Growing up

Respite

School

In hospital

Money

My child has

'My child has...' includes stories and resources about a variety of specific disabilities.

In coming months we plan to set up a parent discussion board where you can share firsthand information and support.

For those who live in the Toronto area, don't forget to drop by the Family Resource Centre on the main floor of Holland Bloorview!

From Monday to Friday, our family support specialists, social worker and parent mentors share resources on a range of child disability topics and Holland Bloorview programs. Just around the corner is the Ronald McDonald playroom, where children aged 2 1/2 and up can have supervised fun while you gather information.

We are hosting an open house on Wednesday November 16 from 3 p.m. to 7 p.m. Meet our parent mentors, family support specialists and library staff and learn about funding, fun and respite resources. For more information or to register, message ndyke@hollandbloorview.ca.

If you can't make it to the hospital, Ontario families are encouraged to phone our Warmline with questions at 416-424-3888.

The Family Resource Centre works with families to educate, empower and connect parents.

Parents and staff participated in a working group to develop the online resource centre and Lisa Callahan, our resident website wizard, brought it all to life.

This is the first phase of our online resource centre and we hope to develop the section based on your feedback. So please -- go in, click on the topics and send me your input (lkinross@hollandbloorview.ca) or post it below!

Inclusion: One teacher's experiment

2011-09-26T14:20:00.003-04:00

Sheila Dobson (above with son Ben) teaches a class for students with developmental disabilities at Sutton District High School in Ontario. She and colleague Andy Hagerman designed a three-week unit called Inclusive Recreation to bring together four classes for students with disabilities with a regular Grade 11/12 Recreational Leadership class. She shared the challenges and rewards of her first experience with inclusion in this piece from the summer issue of BLOOM. Sheila came to visit me a few months ago and she is the kind of teacher every parent would hope for. Thanks Sheila! Louise

Inclusion: One teacher's experiment
By Sheila Dobson

I started teaching special education two years ago, after being a guidance counsellor for most of my career. I knew very little about inclusion, other than being the parent of a child with autism and the joy and heartache that seem to be part of that territory.

I was looking for ways for my students to get to know students in the mainstream and for the mainstream to get to know my students. It’s not that anyone is unkind to my students, but there’s a barrier: it’s like being on different sides of the glass and not being able to communicate. I was searching for a way to make the glass disappear; for our kids to know each other as peers.

Andy and I designed the unit on Inclusive Recreation with ordinary high school kids in mind. The Grade 11/12 class we partnered with is not remarkable. They’re not gifted or elite athletes. They’re just ordinary kids texting at the back of the class and wondering what they’re doing on the weekend. When we began the unit we talked first about the necessity for honesty—that if they couldn’t ask me the questions they were thinking, or if they felt constrained by using correct language or being ‘nice,’ we probably wouldn’t get far.

We did some exercises to help them identify how they felt about disability and inclusion. I asked what words came to mind when they thought of a person with a disability. They wrote about being sad and afraid. They talked about the randomness of a person’s movements, verbalizations that were unclear and a general lack of understanding. This allowed us to have the honest discussions we needed to have before the students could begin interacting together.

We used a few articles from BLOOM to create some context for them, and we had some discussion about the ‘why’ of inclusion, with the emphasis on everybody benefitting. We did a disability simulation where they had a chance to use wheelchairs or experience certain types of disability, such as navigating the school wearing a blindfold.

Then we plunged them, without warning, into an inclusive situation. We paired them up with our community class students, and we played co-operative games. It was a roaring success. My favourite was amoeba tag. I don’t think I’ll ever forget the sight of one of my students dragging his mainstream partner (who was madly trying to hold up his low-slung jeans) around the gym floor.

In guard tag, teams of six kids of all abilities guard a wheelchair from the person who’s ‘it.’ The object is for ‘it’ to try to tag the student in the wheelchair by reaching through the circle of kids who have linked arms around him or her. It was exciting and everyone enjoyed it. More importantly, it gave the mainstream kids a sense of who we are and allowed them to connect in a powerful ‘us’ as opposed to ‘them’ way. We talked about how we structured the games so that everyone can participate and is safe.

Then each mainstream student was paired with one of my students to design an inclusive recreation experience. They learned about principles of inclusive recreation and the board’s safety guidelines. They came up with a number of activities like basketball, badminton, dancing, cooking and going for a walk together. Finally, they organized and hosted an adapted floor hockey tournament for students with disabilities from our whole board. Our final activity will be a slide-show and evaluation of the experience to help us refine the unit for next year.

The number one benefit I’ve seen for my students is that their world is bigger. Now when we’re walking in the halls, mainstream kids will say “Hi.” They know each other and they connect with each other. For the mainstream students, it was a chance to talk honestly about ability in a general sense: “What is able? What does it mean to be disabled or differently-abled?” I saw their perceptions change so much.

The biggest challenge we had was to help the mainstream students overcome their fear and lack of exposure. Given the chance, our students can and will be inclusive. They want to rise to any challenge. They just need to know how. The cooperative games—where the emphasis was on working together—were awesome. In this unit we were able to create authentic opportunities and scaffold the learning so that everyone was safe and successful.

If I had to offer advice to other teachers, it would be to keep the experiences short—20 to 25 minutes—and to give the students enough time to process and talk about their experiences. Our mainstream students did some cartooning to express how they felt about the disability simulation. Some of my students wrote a letter to their recreation partner to share what they enjoyed.

Overall, it was a great beginning. I’m passionate about making the world bigger for all of our students.

Resource

Essential best practices for inclusive schools

Friday wrap-up

2011-09-23T15:32:00.002-04:00

It's a wet Friday and I had to pick Ben up at school because he was sick, so he missed the football game (though we did drive by and see the teams lined up wearing all their kit in the pouring rain!)

I wanted to point you to some interesting dialogue on the blogosphere.

Claire at Life With a Severely Disabled Child wrote a piece about how she doesn't associate her daughter's disabilities with who she is as a person:

I do not interpret her disabilities as gifts that enhance or make her who she is. Who she is, her identity, is, to me, more about her personality, her little quirks and preferences. Her disabilities, on the other hand, stifle her, stifle who she is. She cannot write for long because it will hurt her arm. She cannot express herself because she can't catch hold of the words. She cannot put together a plan for her life because she is completely dependent on others and can't even think in those terms.

This piece was actually a challenge to Bill at Bad Cripple, and he responded with Identity and Disability, Part II:

...when I see a person with a disability one thought comes to mind—adaptation. How has that person coped and adapted to a physical or cognitive deficit. I do not see limitations but rather a whole set of ways that individual has adapted to his or her circumstances. This is why I am no different from any other person with a disability. We all adapt. When I think of my identity, my disability is a central part of that thought process. However, I do not ever think of myself in relation to bipedal locomotion. I think how can I adapt a given activity to my abilities? If I want to ski I need a sit ski. If I want to kayak I know I need a slightly higher back. I do not think or ever wish I was “normal” so I could kayak or ski like others. Likewise when I see or read about Roy’s daughter I think how does she help her daughter adapt. What is it that she can do? How does she get the most out of her physical body and cognitive ability? Comparing Roy’s daughter to a person with “normal” cognition is as pointless as comparing my wheelchair use to bipedal locomotion. Both Roy’s daughter and myself will come away with the short end of the stick.

Meanwhile, Heather at The Journey Continues blogs about celebrating the first birthday of son Zack since his death: Finding A Way Through a Year of Firsts:

After the death of a child or even any death in a family, it's hard to ever imagine celebrating anything again. I was the type of mom who loved to decorate for all occasions. I haven't done that since Zack died. I think I've come to realize that those things just aren't as important as they once were. Balloons and banners don't make a holiday special, it is having the ones you love around you, that make the memories of those days.

Heather goes on to share practical tips on how we can find comfort in remembering the ones we've lost.

And this morning I spoke with Jennifer Johannesen, who many of you know as a BLOOM contributor and mother to the engaging Owen, who died last October.

Jennifer is expecting the first copies of her book No Ordinary Boy, which will be available through Amazon next month. Check out excerpts and stunning photos of Owen in the last year of his life at No Ordinary Boy. And this was a powerful blog Jennifer wrote about the process of writing her book.

Patient Voices on The New York Times has an interesting series of profiles of people talking about living with autism.

Good news

2011-09-21T15:09:00.000-04:00

Ben has a new supply SNA supporting him at school. I asked him how things were going socially for Ben:

"Socially, the other kids are amazing with him! There are a handful who always say hello, ask for high-fives, and try to get his attention when we walk down the hall. I leave him with the other students from the deaf program in the lunchroom. They have made their own section in the lunchroom and they have always made a welcoming show to Ben when we enter. He sits with them, and I sit at the other end of the lunchroom. I tell him that I'm there, even though he may not see me. Once in a while I will look to see if everything is okay. Each time, he seems to be included with the other students. Having this space away from me gives Ben the opportunity to create his own identity with the other students, and make their own bonds and friendship -- everything that a teenager is all about."

Hate crimes: We have to speak up

2011-09-19T14:50:00.002-04:00

A number of bloggers wrote recently about the death of Gemma Hayter (above), a 27-year-old British woman with intellectual disability who was tortured and beaten to death last year by five youth she considered 'friends.'

Disability hate crime begins with verbal abuse

Can the word retard kill? This murder might convince you

Seeds at Schulyer's Monster:

Gemma Hayter's case is a stark reminder that the seeds of societal disregard for persons with developmental disabilities ultimately manifest in abuse, in violence and in death and heartbreak and deep sorrow. If you choose to look, to really SEE, you can follow the line from jokes about "retards" in film and television and the stages of comedy clubs to the young people repeating them on the schoolyards, and you can watch those kids grow into young adults and observe them as they live their lives without empathy or compassion for those who have never had value or humanity in their eyes. Small steps, leading inexorably to a moment where killing a living, thinking, feeling human being might be difficult enough to give them pause, but doing harm to a worthless retard, just for laughs? What's wrong with that? How is the world diminished by a loss like that?

I came across this article written a year ago in the Daily Mail by Katharine Quarmby, the first British journalist to investigate disability-related hate crime. Her book Scapegoat: Why We Are Failing Disabled People was just published:

Cast Adrift, The Lonely Victims of Mate Crimes
By Katharine Quarmby

I became aware of a disturbing pattern four years ago when I was news editor of the magazine Disability Now.

During the previous year – 2006 – eight disabled people were robbed, beaten and brutally killed in a period of just six months, yet each death was seen by police, prosecutors and the media as an isolated incident, a motiveless crime against a vulnerable ¬ victim who couldn’t fight back.

I began to investigate such crimes and discovered that the incidents weren’t isolated and the crimes weren’t motiveless – they were committed out of hatred, rather than because the victims were vulnerable.

Fiona Pilkington killed herself and her daughter Francecca Hardwick after years of abuse from bullies.

There are so many cases: Fiona Pilkington, who killed herself and her disabled daughter Francecca after suffering years of verbal and physical abuse from youths; Christine Lakinski, who collapsed near her own front door but was covered in shaving foam and urinated upon as she lay dying; Brent Martin, who was punched and kicked to death by a gang of youths ‘for sport’, in the words of a prosecutor.

My research, which eventually led to a book, Scapegoat: Why We Are Failing Disabled People, suggests that, although this is a problem with ancient roots, failures in the implementation of modern ‘community care’ policy are also to blame.

The lack of money to fund disabled people’s resettlement was one problem; another was the failure to anticipate the bitter backlash that would ensue. For disabled people had been maliciously stereotyped for at least 2,000 years as either scapegoats, sinners or freaks.

By Victorian times, disabled people were so shunned that many, particularly those with mental health conditions and learning difficulties, were imprisoned in asylums or long-stay hospitals. By the mid-Fifties, the number of disabled people who had been institutionalised had reached a peak of 150,000.

These institutions were, almost without exception, awful places where people with learning difficulties were treated with profound inhumanity.

Then a number of well-publicised scandals in the Sixties brought pressure to bear on the Government to start closing the institutions down.

In 1971, the White Paper, Better Services For The Mentally Handicapped, kick-started the community care initiative, pushing for at least half of those in hospitals to be living in the community by 1990. A similar White Paper, Better Services For The Mentally Ill, was published in 1975 by the Labour Government.

Community care was the right thing to do. But the way in which it was carried out failed the very people it was supposed to help.

Between 1955 and 1975, about 80,000 people left the asylums. But their need for medication, accommodation and support was not met. Community care was done on the cheap.

As early as 1985, a Social Services Select Committee report warned that hospital closures had outrun provision in the community. Even worse, a small number of killings by people with mental health problems sparked a fearful and angry reaction by the general public.

Jean Collins, a campaigner from the charity Values into Action, observed that the closures were characterised by ‘chaos and confusion’.

No one had prepared people with learning difficulties for life outside institutions. They were pauperised too, she said, adding: ‘Many were abandoned in a hostile, fearful society.’

Most were resettled in houses that nobody else wanted, on estates where nobody wanted to live. Many became socially isolated. And it wasn’t long before they were targeted.

Many, particularly people with learning difficulties, were desperate for friendship and were befriended by people who groomed them, robbed them, attacked them and killed them – so-called ‘mate crimes’, a recognised subset of hate crime.

Prejudice against disabled people had only grown stronger because so many had been shut away for centuries. Disability hate crime should have been a tragedy foretold.

But it wasn’t. Such crimes will carry on until we face our own prejudices about disability – and, as a society, start to change.

You may want to follow Quarmby's Disability Hate Crime Network on Facebook.

Today, Bonnie at the Fragile X Files writes about attending Partners in Policymaking, a state program that trains people to advocate for government programs for people with disabilities.

There was a detailed and lengthy account of how people with disabilities have been treated and viewed throughout history. Horrifying stories of torture, abuse, neglect, exploitation, misunderstanding, and disrespect. Nearly every example from history was followed by a recent news story showing us how the very same types of treatment and abuse and misunderstanding occur today.

She begins her blog by describing what is too often the reaction of most of us to these horrors:

You know how when there's a story on the news about a child or a person with a disability being abused or injured or killed, and you tend to turn away or turn it off altogether, because it is just too disturbing and you'd rather not hear it?

It's time to listen and speak up.

2011-09-19T12:31:00.000-04:00

Check out this amazing New York Times story and video that follows a young man with autism through a one-year transition program designed to ready him for independence. Above is a poster he designed to illustrate his dream of becoming a famous animator and illustrator and having his own apartment.

Autistic and seeking a place in the adult world

School update

2011-09-16T15:03:00.000-04:00

This just in from Sallyanne, who is acting as Ben's special needs assistant: Ben was invited to the football game next Friday and is very excited about it!

The football game? The school he's going to is known for its athletics.

Alden, one of the school monitors, has taken a liking to him and invited him. Alden also spoke to the captain of the football team who is going to introduce himself to Ben next week and also invite him to watch the game.

We are starting to recognize students and interact with them in the halls.

Ben was talking about the Halloween dance today and remembered that when we went to visit the buddy office yesterday, they were playing video games.

I'm hoping to start a discussion with Ben to see what club he'd like to join.

He is clearly challenged here in a good way and likes school. He is recognizing staff and the school. I no longer have to tell him which way to turn or which classroom -- he knows.

The photo above was taken the day before school started. We went to Cherry Beach. I was a wreck, as I had been all summer, worrying about whether I made the right decision to change Ben's school.

I was told that there was no way this placement could work for Ben. That he would not get the supports he needs and would not be able to interact with the typical students. Such a dire picture of Ben was presented at our first visit to the school that I had to interject with: "He is a human being."

I tried to allay my anxieties by telling myself that even if the school was marginally better than the segregated school, it would be an improvement. I actually have a list posted in my office of all of the reasons why I have to move forward with the school change. Things like "I need to let Ben take risks to grow. We need to give Ben the opportunity to interact in a mainstream setting. Ben may learn more in this setting. We won't know if we don't try."

There were so many times during the summer when I felt -- I can't do this. Perhaps I should just go back to the segregated school. At least he's safe there.

It reminds me of a mom who told me she practically had a nervous breakdown trying to get her daughter's IEP changed. She wasn't asking for much. One of the requests was that her daughter send her an e-mail from school every day, to build on her computer skills.

A colleague asked me the other day -- how did you get Ben into this regular school when they they didn't want him? I remembered that during one of my meetings when I was being told that this was not a possibility for Ben, the board person added: "But if you ask for it, there's nothing I can do."

So I contacted our trustees and superintendent and I asked.

If only I knew that three years ago when Ben was leaving the Metro School for the Deaf -- the best year of school he ever had. Louise