Wednesday, August 31, 2011

The kindness of strangers

Our cat Paisley had a favourite sleeping spot -- smack dab in the middle of the Periwinkle and Ivy on our hilly front garden. Every day I'd come home from work and there's she'd be, sitting in the sun. Her weight had created somewhat of a nest, depressed into the ground, that encompassed her small, silky body and on which no foliage would grow. She lay curled up in the middle of the hill as if it was the most natural thing in the world.

Last night I had to say goodbye to Paisley curled up in a box.

It was after 11 when we had a call from animal services telling us that  neighbours had seen Paisley hit by a car. They had taken off her collar and called with the registration number. Animal services gave us the neighbours' number so we could find out where Paisley was. I expected animal services to say they were coming to pick her up, but instead they said we needed to get her and put her in the freezer for the night and bring her in the next day (no comment).

D'Arcy called the neighbours, who we didn't know, and we walked timidly to the top of our street and around the corner where they directed us. It was the still of midnight: so quiet, so peaceful. D'Arcy was about 20 feet in front of me, carrying a box and towel and I was hanging back, hands clasped.

The couple who had been sitting on their porch when the accident happened were waiting.

"Poor Paisley" D'Arcy said as he dropped to the ground where Paisley lay, half on the street, half on the sidewalk, and put his hand on her.

The driver didn't stop, they said. They took off her city registration tag and ran back inside to call animal services. They came back with their cell phone to find Paisley dead and called friends of theirs who had cats to ask what they could do. They were as distraught as we were. We didn't know this couple but they knew Paisley, who they said enjoyed playing in their garden.

"We're so sorry" they kept saying. "We wish there was something we could do."

D'Arcy wrapped Paisley up and we placed her in the box. The couple pointed out their house and gave us their street number and encouraged us to come back if they could help or if we had any questions. They were strangers, but they were so kind, so consoling.

In a world that often seems cruel and competitive and impersonal, their actions were a reminder of the goodness in people.

We took Paisley to an all-night vet clinic so she could be cremated.

Paisley was our daughter Lucy's cat, and she and her sister were devastated. Ben slept through the event. When told this morning, he signed "no" over and over again.

He and his brother went off for two nights of camping with a few other children with disabilities and three adventurous workers.

One of them had just told me about a day recently when she was with Ben at home. He went upstairs and when she came up later she found him lying on our bed, patting Paisley. She loved to curl up in Ben's wheelchair on the porch. Nice memories.

Boy with Asperger's, 9, handcuffed by police at daycare

I heard an interview on CBC at lunch today about this case. A Toronto child with Asperger's, ADHD and Oppositional Defiant Disorder had a melt-down at a daycare, and was placed in a separate room where he barricaded himself and began throwing furniture and paint around. The boy later said he was being bullied and called names in the lunchroom. The police were called, broke open the door and asked the boy to lie down, which he did. Even though he was now lying on the ground, the boy was handcuffed.

I just saw the Canadian Press news story in the Globe on the subject. The story, which seemed to be derived from a CityTV report, is seriously lacking in details, some of which come to light in this Globe editorial and this story in the Windsor Star: Toronto Police handcuffed mentally-challenged boy after 'uncontrollable' behaviour.

The news story in the Globe produced over 1,000 comments, and I was struck by the utter lack of knowledge about Asperger's and Oppositional Defiant Disorder (only the former was mentioned in this story). Asperger's is a neurological condition and ODD is a psychiatric disorder.

This was not a case of a 'bad' kid gone 'berserk,' or a discipline issue, or of parents who can't control their kids, as many commenters suggested.

"I'm wondering why a child with Aspergers and other "disorders" is even in a daycare in the first place?" wrote one. "Maybe the parents should have someone look after him in their home. Oh, wait, that would cost more money."

It's lucky he wasn't tasered, pepper-sprayed, slammed to the wall, beaten up or piled on top of by police, said others. "Being a child with 'special needs' doesn't release him from any responsibility," wrote one. "Don't allow special-needs children into classrooms," said another.

I do not know a lot about Asperger's or ODD.

I do know lovely children who have these disorders and the struggle their parents face to try to get them the help and supports they need and to convince people that their children do indeed have disabilities. I know how challenging it is for parents to educate daycare workers or school staff on the techniques that help prevent and diffuse their children's behaviour. There are often insufficient staff, staff who aren't properly trained, or staff who don't follow through with known calming techniques because they don't believe the child has a disability in the first place.

Then I read this Windsor Star report of the event and my heart just about broke when I got to the last paragraph.

Toronto police Const. Victor Kwong said the boy, who in addition to Asperger syndrome, is also diagnosed with ADHD and Oppositional Defiant Disorder, became angry in the daycare's lunchroom when other children were bullying him and calling him names.

"What teachers say is that he became uncontrollable," said Kwong.

A daycare worker, fearing for the boy's safety and that of the other children, called police after the boy barricaded himself in an empty classroom and started throwing around chairs, tables and paint.

Kwong said when officers arrived on the scene, they asked the boy to lay down on the floor on his stomach, and put him in handcuffs.

He said the boy was only in handcuffs for about five minutes, after which he calmed down and was chatting with police about his hobbies. "When he left, he hugged the officers and the nurse," said Kwong who stood by the officers' decision to cuff the boy. "This worked. He listened," said Kwong.

Tuesday, August 30, 2011

A hand to hold

Yesterday Ben and I visited his new high school. It’s a large regular high school known for academics and sports. It has a unit for students who are deaf or hard-of-hearing. They take some of their classes on the unit and are mainstreamed with interpreters for others.

Ben and I had a tour with the principal. Ben saw some classes and took the opportunity to sit down at desks as we were doing a lot of walking!

The principal and I are wading into uncharted territory as this school would not typically support a student with Ben’s disabilities.

My message was that I simply want a better education for my son. My goals are that he improve his reading, keyboarding and numeracy, have access to some general curriculum, and have the opportunity to make friends, learn social norms and have a sense of belonging (the latter is a tall order, I know).

They don't really have a plan in place for how they will support Ben. They are scrambling this week now that teachers and board staff are back from holidays. I am grateful that they are willing to meet with an inclusion expert to get some advice.

Ben liked the idea of a new school once he was there.

After our visit Ben and I went for a treat at McDonald's. We had such a nice time sitting side by side and eating our burgers (I even enjoyed my cheeseburger). Ben was thrilled because I let him get his coke.

After we went to the dollar store where Ben got a ladybug character. He was demanding that we come up with a name for it last night, but I'm hoping that with his new writing skills he can make up a name himself. I was able to get him to write ‘I love Jessie’ -- with reference to the cowgirl -- with one spelling mistake.

As we walked along the street I sometimes took his hand as it's easier for him to walk with support as he still limps with the leg-length difference caused by the surgery. But after a minute or two he would always take his hand away.

Later that day I was racing home from work when I saw a handful of people walking together on the sidewalk. I recognized right away that they were adults with developmental disabilities and their workers. One adult was walking very slowly with her head down and her hand in a worker’s hand. She wasn't being pulled along or told to hurry up. She was allowed to walk at her own pace. I stopped to watch this slow moving band of people in the midst of the typical city frenzy.

I couldn't help thinking: ‘I hope Ben always has a hand to hold like that, even if it's not mine.’

Monday, August 29, 2011

Cloudy thinking: Cognitive therapy tackles it

By Louise Kinross

Several years ago I read Feeling Good: The New Mood Therapy by Dr. David Burns, an adjunct clinical professor of psychiatry at the Stanford University School of Medicine. Dr. Burns has written a number of bestsellers about how the way we think shapes the way we feel. When people are depressed or anxious, according to this model of cognitive behaviour therapy (CBT), they have distorted thoughts flooding their minds – often that they're not even aware of. If they can be taught to identify these distortions and replace their irrational thoughts with more realistic ones, their mood lifts. I found the approach effective and liked that it challenged common beliefs such as the idea that work and ability determine worth.

Dr. Jacob Towery is a colleague of Dr. Burns. He is on the adjunct clinical faculty at Stanford and works with children and adults in his private practice. During a two-year fellowship in children's psychiatry at Lucile Packard Children's Hospital, Dr. Towery found that CBT – which has since evolved into something called TEAM therapy – "has real-world application for parents of children with complex disabilities." I wanted to know how we could use these techniques to improve our lives.

BLOOM: What are the basic principles of cognitive behaviour therapy?

Dr. Jacob Towery: Thoughts and behaviours and feelings influence each other. There are going to be events that happen in life, but the events themselves don't necessarily cause us to feel a certain way. It's more what we tell ourselves about these events that influences how we feel, which then influences our behaviours and further influences our thoughts. If we can change how we think about things, then we can change how we feel, which has a dramatic effect on our mood and behaviours.

BLOOM: Is CBT unique in challenging common values about ability and worth?

Dr. Jacob Towery: CBT was one of the first types of therapy to try to address these beliefs and Dr. David Burns was one of the founders of CBT. David has now developed a new model of therapy called TEAM which is founded on CBT but focuses on empathy at a very sophisticated level – helping people feel understood – and respecting the patient’s agenda. I think these therapies focus the most on challenging common beliefs about ability and worth.

BLOOM: How could CBT be helpful for parents of children with disabilities?

Jacob Towery: One benefit is that a parent can work with someone who can understand what they're going through at a very deep level and empathize and validate what that experience of raising a child with complex needs is like. The other is that if the parent is feeling depressed or anxious as a result of what they're going through, that's changeable. The child's disability can't be changed, but the parent can learn to see it and experience it differently and to come to a different place in how they feel about it. It is possible to raise a child with complex disabilities and not be depressed and anxious.

BLOOM: Sometimes it can be hard to focus on what your child can do because for children with multiple disabilities, there are so many things they can't do.

Dr. Jacob Towery: Right, exactly. And I want to emphasize that there’s nothing that says a person has to change their thoughts or beliefs or focus. The techniques we’ll discuss should only be used if the parent is already feeling accepted and understood by the therapist and is choosing to want to see things differently, which is challenging. If the parent does want to change their thoughts, it can be helpful to write a daily mood log where they write down the thoughts that are making them feel sad or upset or angry. For example: “My child will never be able to accomplish what other children can.”

There's probably a certain amount of sadness that is appropriate and healthy for a parent of a child with multiple challenges. To know your child will have to struggle more than other children do is unfair. Sometimes parents don't give themselves permission to grieve the loss of the healthy child they expected and therapy can provide the space to experience that sadness. But once you have grieved, continuing to tell yourself “My child will never do anything” might be an overgeneralization. Is it really true that your child will never do anything? What if we focus on what the child can do? Perhaps the child can make eye contact now, but didn't used to be able to. Maybe your child can smile and generate a smile in you as a parent. Maybe they can give another person a hug and make that person feel good. It's all about what we focus on. We can focus on the 100,000 things that a child can't do, or on some of the things that they can do, and we will feel differently depending on our focus.

BLOOM: So overgeneralization is one common distortion. What’s another?

Jacob Towery: Let's say a parent has the thought: “My child is worthless because he will never have an independent job and another child is worthwhile because he does have a job.” That's a type of black-and-white thinking. If the parent wants to challenge that thought, we can help them recognize that most things in life fall more into shades of gray and are more nuanced. They aren't one extreme or the other. We could collaborate to come up with a thought like: “Although my child won't have a job and pay taxes like some other children, my child can still make me smile. My child does acts that are kind and generous. My child can give me a kiss and pet an animal. Those things are important and worthwhile. So although my child might have different abilities, it doesn't mean he's worthless.”

BLOOM: There’s a chapter in Dr. Burns book Feeling Good called Dare to be average that looks at how destructive our perfectionistic tendencies can be. But what if my child’s IQ is below average? Do some of the same principles apply?

Dr. Jacob Towery: It’s not the reality of a child having cognitive deficits that leads to suffering, it’s our thoughts that there’s something wrong with that, that intelligence is the only measure of worth, and that because my child is less intelligent he’s worthless. These thoughts can be defeated. One of the techniques we can use is the double-standard technique. People are often much harsher with themselves than they would be if talking to a friend in a similar situation. With the double-standard technique the therapist pretends to be the patient’s best friend – because we often talk to our friends in a more forgiving, consoling and compassionate way. In this technique, the therapist role-plays being a best friend of the patient, but one who has had all of the same life experiences, values and thoughts as the patient.

The therapist might then verbalize some of the patient’s negative thoughts from the daily mood log, pretending to be the patient’s best friend and say something like: “I’m really struggling because my 9-year-old son isn’t as verbal as other kids and I feel the only value that’s important is someone’s cognitive ability. So I feel my child is kind of worthless.”

The patient might then respond as they would to a good friend: “You’re being really hard on yourself. You’re saying intelligence is the only thing that’s valuable. I don’t think that’s true. I don’t know if Mother Teresa had an IQ of 150 or 40, but I know she helped a lot of people in need and was incredibly compassionate. Even though she may not have had a genius IQ she helped the world in profound ways. Then there’s the Dalai Lama. He seems to be a pretty bright guy but I don’t think that’s why people love him universally. He hugs people and speaks in a gentle way and is very generous with his time.

"To say intelligence is the only thing that matters is silly because every person is a composite of many different abilities, values and characteristics. Intelligence is only one part of what makes someone human. What about how generous someone is, how thoughtful they are, how kind they are? Maybe your child is not the greatest at complex problem-solving but he appreciates music or can sing a tune. Maybe he’s not the best at reading but he’s good at giving hugs and is socially tuned-in so that he knows when to make a little joke. That in itself is a form of intelligence."

The therapist might then ask: “Is this really true, or are you just saying that to make me feel better?” And if the parent recognizes that what they’ve said is true, the therapist might follow up by asking whether it’s just true for the “friend” or true for the parent as well. This often leads to a sudden and profound change in mood when the patient realizes that what they’ve said to the “friend” is not only true, but also true for themselves. The double-standard technique gets to the parent’s ability to speak in a more gentle and kind way to themselves.

BLOOM: But our society doesn’t seem to value things like compassion and kindness in people.

Dr. Jacob Towery: We need to accept that some of these things aren’t valued as highly as we would like them to be valued and we wish the world were different. Our children’s gifts aren’t as valued and we can feel a healthy sadness about that. However, if we’re telling ourselves “No one values my child” we can challenge that by going out and asking other people their opinion and sometimes we find out we’re very wrong. I have a cousin who has Down syndrome. Let’s say I had the thought: “The world doesn’t value her because she doesn’t contribute.” I could go out to talk with my aunt and my aunt’s neighbours and I could say: “How do you feel when my cousin comes and visits with you and gives you a hug?” And the neighbour might say “I enjoy living beside her because she’s so sweet and she makes the world a better place.” We can be convinced that no one sees value in our child yet when we go and check this out, we sometimes find our thoughts about what other people think don’t line up with what they actually think.

BLOOM: How can CBT help parents of children who didn’t make the gains they had hoped for? It's a popular idea that if you only work hard enough, anything is possible, and that disabilities can be 'overcome.'

Dr. Jacob Towery: Many of these platitudes are changeable and we can defeat them if they're causing us distress. Let's say I have a child with severe cerebral palsy and I do everything possible and my child still needs a wheelchair. I may have the thought: "If only I had done more, then my child would be able to walk." It can be helpful to examine the evidence in support of, and against, that thought.

Let's start with evidence in support. My child is not currently walking, so maybe that fact suggests that I didn't do enough. Other children are walking, so maybe if I'd done more my child would be like them. Then there have been extraordinary cases where people have pushed and something miraculous happens.

But there's a lot of evidence against the idea. As a parent, I may have spent years of my life getting my child really good rehab and going to heroic efforts and yet he still can't walk. So maybe the thought that I didn't do enough isn't true. There are plenty of other parents who made similar efforts and spent hundreds of thousands of dollars and years of their life on their child's rehab and yet their child still can't walk. It might be that we all suck as parents, or is it more likely that there are some children who just can't walk and even when parents do everything right, they still can't walk? There's no law in the universe that says every child can walk. A lot of this has nothing to do with my ability as a parent. Some children are simply born with certain syndromes or difficulties and they can't walk.

Then as a parent, I could ask myself, "Is the evidence stronger in favour of that thought or against it?” And if the evidence against the thought seems much stronger, it might change how strongly I believe that thought. Then the thought might not bother me anymore or cause distress.

BLOOM: It makes sense to me that we can accomplish a lot by identifying the distortions in our thinking and changing our thoughts. But when the rest of the world seems to be moving in the opposite direction in terms of values, how can we maintain our more positive beliefs?

Dr. Jacob Towery: We all drift in and out of enlightenment – places where we feel confident and settled with our beliefs – and then inevitably our negative thoughts return and we go back to thinking: “It’s unfair, my child isn’t as good as other children, my life should be different now.” This model of therapy can teach parents how to handle those thoughts quickly – so they don’t suffer for days or weeks at a time. Sometimes we need to learn how to accept some truth to the thought we’re having, which allows us to not be as bothered by it. For example, any parent of a child with complex needs is going to have to come to a place of acceptance that their situation is unfair. It is harder for their family than other families and sometimes it may feel like more than they can bear. Whenever we have the idea that something is unfair, it leads to resentment and anger but if we have the thought that something is unfair and that’s just the way it is, there’s nothing I can do to change it, there’s something about that act of acceptance where we’re not struggling against it, not wishing it were different, that causes less suffering and struggling and allows us to empathize with our situation more.

BLOOM: How would you help me change the thought: “I’m a failure because I couldn’t change the outcome for my son?”

Dr. Jacob Towery: Well let’s define terms. How would you define the word failure?

BLOOM: I don’t mean it in the sense that I feel there’s something inherently wrong with me, that I’m a failure as a person. I guess I mean that I didn’t succeed at something I wanted to succeed at that was important for my son.

Dr. Jacob Towery: And how many parents have not succeeded at something that they’ve wanted for their child? I think that applies to every single parent I’ve ever met. I don’t know a person that’s succeeded at everything. It sounds to me like you wished you could overcome the impossible and have the best for your son and that makes complete sense and is not something I would want to change about you.

But how about reframing the thought: “I’m a failure because I didn’t overcome my child’s disability.” Perhaps we could say: “I am a human being because I was not able to overcome my child’s disability.” Or, “I did everything I could for my son but he has such a severe disability that no one could have overcome this.” Or “It would be wonderful if my son hadn’t been born with a disability, but this is the way life is now.” Or “I’m imperfect and there are probably some things I could have done slightly differently with his rehab but every time I made a decision I did what I thought was best.” Or “If I was God, I could have overcome my son's disability.”

BLOOM: What can parents do to nurture the new, more realistic thoughts so that the old destructive ones fade away?

Dr. Jacob Towery: There are several things. One is to write down both the negative and reframed thoughts and rehearse the more positive thoughts several times in the subsequent days. With many of my patients we tape record our sessions, especially as we are going into the double-standard technique, and then have them listen to it again later for homework. By practising a number of the techniques with an experienced TEAM therapist and getting skilled at using them, even if the old thought returns, parents can quickly defeat it.

From Dr. Burns: "Reading Feeling Good might be a useful first step for parents wanting to learn more about how to overcome feelings of depression and anxiety. My Feeling Good Handbook would also be a good choice, as the introduction describes my own intense concerns when my son was born. He had to go to the pediatric intensive care unit due to difficulties breathing. The story brings out the powerful impact of our thoughts – and not events – on how we feel and illustrates how cognitive distortions can interfere with a loving and healing relationship with our children. There are large numbers of cognitive therapists in Canada although there are no certified TEAM therapists (we are just developing our certification)." See Feeling Good Institute for American TEAM therapists or contact Dr. Towery.

Saturday, August 27, 2011

More from Ian Brown

Another thought-provoking piece from The Boy in the Moon author Ian Brown in today's Globe and Mail: I'm glad I never had to decide whether my strange, lonely boy ought to exist.

'On his good days, Walker is proof of what the imperfect and the fragile have to offer -- a reminder that there are many ways to be human, and that judgment is our least valuable human capacity.'

Friday, August 26, 2011

Hi. I'm Happy.

Today I felt panicky about the upcoming school year and our plans to change Ben's school. We haven't been able to do a lot of preparation because staff have been off all summer and only come back next week. Ben and I will visit for the first time on Tuesday and school starts the following week.

I went outside to take a walk around Spiral Garden -- the outdoors camp run by practising artists at Holland Bloorview. It was empty, having finished yesterday, but the children's creativity was on full display.

I came upon a huge mound of earth that had been fashioned into a face. There was one eyelid in the centre of the face through which flowers were peeping, a long, pointed cloth nose that had been carefully stitched, and white and yellow wooden teeth pressed into a mouth. New shoots of grass were beginning to sprout out of the mound. Beside the creature was a bright green sign on which had been painted: "Hi. I'm happy."

It seemed like Ben was talking to me, because that is exactly how he sees himself. Despite his many challenges, he is happy and he wants others to know that he's happy. That made me think that whether the new school situation works out is irrelevant -- as long as Ben stays happy. If it works -- great. If it doesn't, we will find something else that works. As long as Ben is happy, that is all that matters.

Monday, August 22, 2011

'I don't want any parent to feel alone'

Kate Robson is parent co-ordinator for the Newborn Intensive-Care Unit at Sunnybrook Health Sciences Centre. The new 41-bed unit – which opened last year – cares for babies born before 28 weeks as well as newborns with other medical issues. Kate’s ties to Sunnybrook go back six years when her daughter Maggie was born at 25 weeks (photo above) and was an inpatient for over five months. Her position in the unit as a parent supporting families is a new one. Thank you to Frank Gavin, former chair of the Canadian Family Advisory Network, for letting me know about Kate! Louise

'I don't want any parent to feel alone'

BLOOM: Describe your role.

Kate Robson: My main priority is to work with families and be there for them as a support – and what that looks like depends on the family and what they need. For some families I’m someone they can talk to and bounce ideas off. I help other families navigate the system and connect them to resources in our hospital and elsewhere. I do a lot of visiting, walking the floor and have regular events to connect the parents. Every Thursday is a standing invitation at 1:30 and I bring treats and it may be social or we may bring in a speaker. We try to give people an opportunity to celebrate because there are lots of reasons to celebrate. Because our families have single room units, it’s even more important that I connect them so they don’t become isolated.

BLOOM: What are the greatest challenges for parents?

Kate Robson: Uncertainty. Before my daughter was born, I assumed there were more black and white answers when it came to diagnosis and predicting the future. Learning to live with the gray areas is difficult for every family. For many, everything was going lovely with their pregnancy and then they suddenly descended into this medical abyss. So it’s very surreal. There are feelings of isolation – that your experience is different from what you expected and from what everyone else around you is going through. For families who are here a long time, it’s hard to manage on a practical level – being away from home, and with all of our rules and regulations in terms of infection control. This experience changes you. It changes the way you look at the world and your perceptions of control and safety.

BLOOM: What was your experience of having a baby who needed to be in the NICU?

Kate Robson: Maggie was born at 25 weeks at 500 grams – the same weight as a block of butter. Everything was fine and then my blood pressure skyrocketed and they realized that a problem with the placenta was preventing Maggie from growing. I had a c-section and she had a very rocky first three weeks of life: there were many suspected problems and she had to have a surgical procedure on her heart. All the drama of ‘is she going to make it?’ was front-loaded in the first month.

BLOOM: I sat in an NICU waiting room once and listened to parents talk about how they were being pressured to withdraw care from their baby because the probability of disabilities like cerebral palsy was high. One mom said: “I know my son may have CP, but he’s my son!” I wondered how much personal experience with disability the NICU physicians had. Was withdrawing care ever suggested as an option for Maggie?

Kate Robson: No. I think the idea of informed decision-making is a lot more complicated than we thought. Once a parent has asserted his or her decision, then we need to create a judgment-free zone and our job is not to question the value of the child’s existence or the value of the parent’s decision. We need to put that child on the path to the best life possible. Because people who work in the NICU are used to trauma, it can limit our world view. We’ve seen the worst of the worst and it may colour our perceptions. We need to support people to make their own choices. That’s where I love families coming back to us and sharing their experience and ideas on how we can improve.

BLOOM: Tell us a bit more about your stay in the NICU.

Kate Robson: The first two months were focused on survival and stability. They were great about helping us hold Maggie and do ‘kangaroo care.’ This is holding your baby skin to skin against your heart. It’s the closest you can get to having them back in the womb. Your body will regulate their temperature and there are all kinds of benefits in terms of growth and brain development. Each room has a kangaroo care chair – which is easy to get in and out of and makes it comfortable to hold your baby, especially with a ventilator – for hours at a time. You start with your baby in an incubator with lots of stuff - ventilators and things to hold IVs - and as they grow the stuff goes away and the machines get smaller. It becomes easier for parents to play a role (although our involvement is encouraged from the start). The baby moves from being tube-fed to being breast- or bottle-fed.

BLOOM: Does Maggie have any disabilities?

Kate Robson: No, she doesn’t. She’s going into Grade 1 and seems to be doing fine. Babies who are very small for gestational age tend to be a bit smaller and what’s difficult now is watching her deal with comments and questions about her size. She’s had some experiences with bullying. As a parent, I still find it very anxiety-producing to go into a new clinical space and have her assessed. I’m always waiting for everything to go wrong.

BLOOM: Do you think it’s hard for parents in the NICU whose children have been diagnosed with disabilities to share with you, knowing your child doesn’t have long-term issues?

Kate Robson: We’re very fortunate and in many ways Maggie has been an easy kid. That’s not what always happens. But I don’t think other parents would trade their kid for mine. Sometimes I have a bit of almost survivor’s guilt, thinking ‘Am I the person they want to talk to?’ But I’m only one person. I have one story and I can’t be the answer for everyone. We have a lot of very gifted parents we can connect people with through our follow-up clinic. It’s so important to connect parents.

BLOOM: What do you hope to achieve through your role?
Kate Robson: My main goal is that I don’t want any parent to feel alone – whether in those early days or 10 years down the road.

BLOOM: In what ways could Sunnybrook’s NICU improve?

Kate Robson: I think in peer mentorship, in early education with families, and in really strengthening the relationship between caregivers and families, although I think we have a strong base there. I’m one parent voice, but I’d like to bring more and more families in and engage them and ensure there are diverse parent voices.

BLOOM: When you hear from graduate families, what do they want you to focus on?

Kate Robson: They want the experience of care to be the same, even if they can’t always have the same caregivers. They don’t want people telling them different things all the time. I think we have to find creative ways to help families feel like they have choices. They’re in a situation where a lot of choice has been taken away and we can’t fix that. So when it’s possible to make choices, we have to give them the opportunity and honour those choices. I think we also have to do more to support families who are transitioning home. That’s how I felt and that’s the feedback we get from families. I think peer support could be a cost-effective way to help and a lot of times the best help comes from people who’ve been where you’ve been.

'Deselecting' our children

An important piece in the Globe and Mail today:

'Deselecting' our children

Here’s a recent Danish headline: “Plans to make Denmark a Down syndrome-free perfect society...”

Saturday, August 20, 2011

When Somebody Loved Me

I know I mentioned that Ben loves Jessie, the cowgirl from Toy Story.

If left to his own devices, he'll surf the internet to listen to her soulful song, When Somebody Loved Me, over and over and over again.

We may hear it in English, or Spanish or Portuguese.

He will proclaim his love for Jessie (I love Jessie, he'll sign).

Why was Ben so drawn to this song, I wondered. But listening to the lyrics, I think it's somewhat of  a metaphor for Ben's life.

When somebody loved me,
Everything was beautiful
Every hour we spent together lives within my heart
And when she was sad,
I was there to dry her tears
And when she was happy,
So was I
When she loved me

So the years went by
I stayed the same
But she began to drift away
I was left alone
Still I waited for the day
When she'd say I will always love you

Lonely and forgotten...

I wonder if, like Jessie in the song, Ben feels the ache of staying largely 'the same,' while everyone around him grows up and drifts away.

He had friends at the elementary school he went to. But they've all progressed at an amazing pace and he wasn't able to keep up.

If only Ben could live in a world where the rules were simpler and no one got left behind.

Tuesday, August 16, 2011

The mental filter

Yesterday our boys went go-kart racing. I had hoped that Ben could drive, but they said the double cars (above) had to have an adult driving. In the single cars, which kids can drive, Ben couldn't reach the pedals.

Ben had a blast anyway, and I wondered afterward if it would have made any difference if he had driven himself.

But I wanted him to.

Recently I've found myself focusing on things Ben will never do.

Ben came home with a certificate from camp that said he 'swam' to the island. This sounded huge and it was. He wore a life jacket and a boat pulled him the whole way. Apparently he was in heaven. But I couldn't help thinking he would never know the feeling of stroking through the water independently.

The other night I played ping pong with my younger son and I tried to think of how we could pull a bench up to the table so that Ben wouldn't be at a height disadvantage for playing. But I couldn't come up with a workable solution. Then this same son and I were playing tennis under the hot sun and the thought "Ben will never be able to hold the raquet" popped into my mind.

Soon I was buying something at the corner store and thought: "He'll never be able to figure out the change in his head. How will that make him feel?"

Perhaps none of these things matter at the end of the day and they don't necessarily equate with a good life.

You don't need special abilities to breathe in the sweet scent of fresh-cut grass, or to feel your hair blown back in the wind of a speed boat. Just what does make a life good?
Something I've been thinking a lot about lately is how little control we have over our children's lives. We like to think that through therapy and doing all the right things we can improve the "outcomes" for our kids.

The idea that 'anything is possible' if you work hard is popular in our culture. There's the Calvinist notion that people 'get what they deserve.' All of these ideas strike me as incredibly simplistic and untrue now -- whether we're talking about people with or without disabilities.

The fact of the matter is that there are loads of things I will NEVER be able to do, no matter how hard I try. For example, I can never be a ballerina. When I was young, the National Ballet said I didn't have the "right body." I will never be a runner again because my knees are shot. I will never have real hair on my head because I have an auto-immune disorder that prevents it from growing.

Next week I am interviewing Dr. David Burns, a professor of psychiatry at the Stanford University School of Medicine and guru of cognitive behaviour therapy, and one of his colleagues, Dr. Jacob Towery. Dr. Burns has written a number of bestsellers about how the way we think determines the way we feel.

When people are depressed or anxious, according to CBT, they always have distorted thoughts flooding their minds -- often that they're not even aware of. If they can be taught to identify these distortions and replace these irrational thoughts with more realistic ones, they are much happier.

So instead of thinking "Ben will never drive a go-kart" I could think "Ben got to experience the go-kart and he had a blast, and it may not have made any difference to him whether he was the passenger or the driver."

One of the common cognitive distortions in CBT is the mental filter -- when you filter out anything good and focus only on the negative. I know this is what I've been doing in thinking about what Ben 'can't' do. I'm hopeful that Dr. Burns and Dr. Towery will have some useful advice for parents like me.

One of the things I like about CBT is that it identifies many self-defeating attitudes that are prevalent in our culture -- for example, that work and achievement determine your worth.

Stay tuned! Louise

Thursday, August 11, 2011


It doesn't look very comfortable to me, but?

Tuesday, August 9, 2011


Last week of camp

Monday, August 8, 2011

20 questions

My son Ben's genetic deletion happened as a random error at conception.

The way a researcher described it, when my chromosome 8 -- let's call it a green ribbon -- exchanged parts with my husband's chromosome 8, a red ribbon, to produce a striped ribbon, a minute piece was left out.

Early on, I found giving detailed histories of my pregnancy painful. Although I'd been told Ben's condition was a random or 'spontaneous' change, I didn't know a lot about it.

So when I was asked whether I had taken prescription drugs, drunk alcohol or experienced 'stress' during my pregnancy, and then was asked all kinds of questions about the actual birth -- including whether he needed oxygen -- it was hard not to feel in some way implicated.

Last week, I was stunned when I did an intake interview with an agency, and was asked the same questions!

I explained that Ben, now 17, had a genetic deletion that occurred at conception -- so I wasn't sure why I was being asked about my pregnancy and delivery. The cause of his disabilities was known and wasn't related to anything I did or didn't do during pregnancy.

The intake person explained that they wanted to learn more about the causes of intellectual disability (I repeated the above, but the person didn't seem able to process it -- or perhaps she was just following orders about filling out the forms).

So we went through a detailed pregnancy and delivery history again. Whenever I was asked a question about something I did or didn't do, or the circumstances of Ben's birth -- and the person took down detailed notes -- I followed by saying: "But the genetic condition was caused at conception. It had ALREADY happened!"

How is this pregnancy information used? Will someone who understands the mechanics of a genetic deletion read it?

Should someone who doesn't understand how a genetic condition occurs be asking questions about my pregnancy?

Sunday, August 7, 2011


Friday, August 5, 2011

The hard part: A teen's experience of grief

I'm delighted to share the story of another BLOOM reader, Rose-Marie Gallagher. Rose-Marie is a special educator and parent to two teenagers, one (above) with significant disabilities. Here, she writes about entering the uncharted territory of her daughter's own grief. Is this something you've experienced? Let us know. Thanks! Louise

The hard part: A teen's experience of grief

By Rose-Marie Gallagher

Grief is a slippery creature. About the time you think you have it tamed, it shows a new side of itself.

When my daughter received her diagnosis of Rett syndrome nearly 14 years ago, I grieved. I grieved for what she would never have. I grieved for the “normal” experiences I had anticipated in raising her.

Though her birth and infancy were delightfully typical, her first birthday marked the beginning of change. Her hand use slipped away over the next few months and her progress towards walking disappeared. Physical discomfort, repetitive hand movements, and sensory disintegration took their place. She lost the ability to chew and to swallow safely. Deep silence replaced her words and joyful babbling songs. When we did hear from her, she screamed inconsolable cries born of the inability to express her pain or fear of the changes happening inside her.

We traded dreams of bicycles and prom heels for a wheelchair and ankle-foot orthotics. Instead of a VW Beetle, her ride would be an accessible van. There would be no mother-daughter fittings to sew her wedding dress; rather, we would plan the suite in our home where she will live the rest of her life with her father and me.

Through much wrestling and praying and struggling, I worked through my own grief. It took several years.

During that time, through much help from her therapists and doctors and especially from our daughter herself, things did settle. Medication and a g-tube gave us the upper hand on some of her pain and a way to feed her safely. She learned to process the world around her without feeling overwhelmed. We learned to read her eyes as she gazed to picture symbols to communicate. Our little girl blossomed out of her social isolation into a delightful young lady.

I reached a place of peace.

It isn’t that I actually like Rett syndrome, and would never wish it on the vilest enemy, but I have come to accept both it and our new normal. What began seeming like a curse has brought us tremendous blessing.

(Once in a l-o-n-g while though, I must admit, I still do have one of those “I hate Rett syndrome” tantrums when no one is looking).

Several weeks ago, however, brought a new perspective to grief.

One Friday, grief hit my daughter.

And I’m not sure how to handle that.

She was sobbing when I went into her bedroom to get her up for the day. It wasn’t a cry of physical pain. It was tears-streaming, pouty-lipped, breath-catching, my-heart-is-breaking sobs. She seldom cries like that.

I did the best I could using words on a dry erase board and yes/no questions to find out what was bothering her, and she quickly, deliberately answered my questions with her eyes.

I wrote key words in the corners of the dry erase board and “something else” in the center. She looked to each phrase as I asked about it.

“Are you in pain?” – no response means “no”

“Did someone hurt your feelings?” – no response

“Are you unhappy about something at school?” – no response

“Are you frustrated?” – yes!, her eyes moving instantly from the word up to my eyes, pleading for me to understand.

There is no need to ask if “something else” is bothering her.

I held a “yes” card in my right hand and a “no” in my left. She responds by fixing her gaze on the cards.

“Are you frustrated because you can’t walk?” – yes, new tears welling.

“...because your hands don’t work?” – yes, breath catching, lip pouting.

“...because you don’t speak?” – yes, shoulders shaking.

She slumped her body against mine, eloquently saying as much without words as if she had spoken.

It boiled down to her sadness and frustration over all the things Rett syndrome has taken away.

This was a very complicated discussion for me, because I didn’t want to plant unhappy ideas that didn’t already exist, giving her even more to be upset about. But we muddled our way through and she was heroic in her strength to respond and press ahead.

I am so proud of that girl!

Of course, it was all I could do to fight back tears of my own. In the end, I gave in and cried right along with her.

We shared a good cry, a long snuggle, some soul-baring prayer, and I let her stay home from school so we could have a mother-daughter day. If she needed to talk some more, we would have that luxury. She was probably too distraught to have had a productive day of learning anyway.

She wanted to curl up on the couch together and watch “Ugly Betty” reruns. It was a good distraction and the day ended much more cheerfully than it began. She hasn’t seemed grieved since.

We all need a chance to vent our sadness and frustrations sometimes. I feel so blessed to be able to give her that opportunity.

Yet it does leave me with some questions.

Before, in processing my grief, it was my own grief. I owned it. It was a selfish, look-how-this-syndrome-twisted-our-lives grief. Sure, I felt sad over the losses our daughter had suffered and the experiences she would never enjoy. But even that was my grief over her missing out.

This experience awakened grief in a new way.

I got to see what it is for her to ache over her own losses. It had nothing to do with me at all.

Now what?

Is it possible to work through what I do not own?

Unfortunately, no.

This is grief I cannot process for her; it’s something she has to process herself. Yet she has no means to express words, no way to talk about the things bothering her most.

The things I did to work through grief--talking with my husband and family and friends and eventually a counselor, writing out my unlovely thoughts, even shouting at God (it wasn't pretty, sorry)—are not options for her.

Somehow, she is going to have to work through this on her own.

Not that she's completely on her own; the Lord is with her. But still, this is her own grief to process through.

So tell me...

How do I help her?

The helplessness is familiar; my husband and I have been helpless in “kissing the boo-boo” of her syndrome to “make it go away.” Only after we surrender its suffocating weight can it be lifted so we can breathe again.

Truly, I am at a loss. This is uncharted territory for me.

Have any of you helped your kids process their grief when it hit them? How did you do that?

Rose-Marie Gallagher trains parents and educators on ways to build literacy and communication skills in children with multiple disabilities. She and her family enjoy life on a small farm in Washington State. Check out her blog about special-needs parenting and teaching at Adapting Creatively.

Wednesday, August 3, 2011

Meet Sonshine, check ignorance at door

I am thrilled to share a new parent voice with you today. Beth Davis, above with her son, is a third-year pharmacy student living in the Bay Area in California. Beth writes about her son, who she refers to as Sonshine, on The Sonshine Chronicle. Check her blog to see Sonshine's new red glasses! Beth writes here about the disconnect between her experience as a mom of a child with a rare syndrome, and the ignorant comments she hears her classmates voice about disability.

Meet Sonshine, check ignorance at door
By Beth Davis

As parents of children with special needs, we all have good and bad experiences with the world of health care.

It's always something of a toss-up when we go to a new specialist whether that professional will understand and respect us.

But is it any wonder that many professionals don't know how to interact with families when comments like the following leave the mouths of students entering the profession?

“When I lift my bangs up, I look like I have Down’s because my forehead is so huge.”

“I would have thought of the answer if I weren’t so retarded.”

"I just don't want to adopt a mentally deficient kid who is just going to sit in a wheelchair and go, 'uuuuuh.'”

Just a little background: I am a student pharmacist. When my son was born with a rare genetic condition (a deletion on the 11th chromosome, aka Jacobsen syndrome) I took a year off school to stay home with him.

That year, as you can imagine, was filled with doctor's appointment after doctor's appointment. Then, as the doctors' appointments dwindled, it became therapy session after therapy session. Taking that year off was not part of my life plan, but in the end I was happy I could care for my son in that capacity.

I am now back in school. Despite the isolation of my son's first year, I dove back into the world of classes, homework, exams and a social scene that most definitely does not revolve around children -- never mind children with disabilities!

As I became more integrated into my new class, I couldn't help but notice the how little our program was doing to expose us to disability issues. While I would likely not have paid much attention to the above comments before my son was born, now these words hit me in the gut and paralyze me.

Despite the disturbing comments that have come from some classmates, I know that as a group, my peers and other professionals are generally quite compassionate. We want to help. We want to make a difference in another's life. None of these comments were said out of malevolence, but rather out of ignorance. As we all know, the vast majority of people have no idea what families who are caring for children with disabilities go through -- and that majority includes doctors, nurses, pharmacists and others on the medical-care team.

Most health-care professionals I have interacted with have been pleasant, although a few have been downright rude (it probably helps that my son happens to be an incredibly happy little boy who smiles at just about anything). We are lucky to receive care at a cutting-edge health care facility, but even here few doctors seem to understand what we, a family with a disabled child, are experiencing.

They don't understand the isolation, the demands of therapy, and the worry that everything could just fall apart without a moment's notice. They also don't understand the elation we feel when our children overcome challenges and prove the naysayers wrong.

Mostly, we have encountered an attitude from professionals that includes bucket loads of sympathy and a desire to help, mixed with a pinch of pity. This kind of attitude, to me, is not ideal. Instead of sympathy and pity, I would rather they celebrate my son with me, no matter what his medical and developmental issues may be.

It is a difficult problem, this lack of awareness, but not one that's being ignored, at least in our school. I know that for the medical students there are small group forums where 15 students sit around for an hour or so and listen to someone like me talk about life caring for a disabled child.

In our own pharmacy school there are curriculum changes being made to include special topics on disability issues, but what topics will be presented is yet to be determined. However minor, I view these changes as hope that future health-care providers will have smoother interactions with the special-needs community.

The reality, though, is that I still haven't told many of my classmates about my son's condition, despite the fact that if you met him, his disability would be fairly obvious at 18 months of age. Cognitive disabilities carry a distinct stigma, especially in the social circles that surround me. It's not an issue of compassion, but rather that our school culture places such a high value on intelligence. So where does that leave those with a low IQ?

Not really less human, or even less valuable, but rather foreign.

Even when I told my closer friends about my son's Jacobsen syndrome through email (at the time I just couldn't bear to say the words out loud), I did not receive replies from some until a week later. From others, there was no reply at all. As I do start opening up about our family's story with the rest of the pharmacy school community, I can only hope that my son can help put a face and a 'real-ness' to disability. Maybe then, off-handed comments such as the above will no longer hold a place in any conversation.

Tuesday, August 2, 2011

Is 'normal' overrated?

This post by parent blogger Heather Hamilton really made me sit up and think: Finding 'normal'.

In it, Heather, who lost her son Zack, 3, earlier this year, writes about how the world of 'normal' she once longed for is not what she expected it to be (now that she finds herself raising two typical boys):

"In fact, the 'normal' life that I had been wishing for, is now here and the grass is not as green as I had expected. In fact, it's not fulfilling in the same way at all. While I don't have the added stress, anxiety and even work of three kids and one with special needs, I also don't have those tremendous joys that life used to offer me. The life that I had sought after for over 3 years, is now the life I am living and it is not at all the life I was meant to live. I miss the life that I was given...the depth that my life had."

It made me think about how we parents can get caught up in wishing our children's lives were different -- 'normal' -- not realizing that perhaps it is the unique path our children with disabilities are on that makes life so rich.

Do check out Heather's piece. I'm so grateful she shared it with us! Louise