Tuesday, March 29, 2011

'I'm happy'

The two-hour session to craft a bit of a vision for Ben's future is coming up.

We're using a tool called Passport, developed by Community Living. I like its concepts. Sections include My Story; The Suitcase (the positive qualities the person brings); The Scroll (current supports), The Globe (the person's dream of what a good life will look like); The Yield Sign (barriers); An Action Plan; and The Road (the people who will offer support).

I want Ben to contribute to the discussion so thought I'd set up these sections on his communication software on the iPad.

Recently, Ben has made it clear that he's not interested in using the Proloquo. He's deleted the software a number of times and when encouraged to use it, says "it's boring." After all my efforts to get this functional, I think I need to rethink his options for expression.

But yesterday, I realized the Proloquo may be a neat way to have him contribute to the planning day. I created a "My story" category and asked him: "What would it be important for people to know about you?"

"I'm happy," he signed. So I typed in 'I'm' and he typed in 'happy' and I asked him to choose a photo that would go with this description.

He immediately clicked on the pic above of him fishing at camp.

I know he's not always happy, and his disabilities cause him great frustration and anxiety. But my heart lightened thinking that he still views himself -- overall -- as a happy person.

Maybe this process will yield other surprising results.

Monday, March 28, 2011

Two pet rats -- and one syndrome

A delightful children's book landed on my desk today. It's called Melanie & Tommy have two pet rats and one syndrome.

It's narrated by Tommy, 6, and follows his adventures with sister Melanie, 9, as they push their pedal car around their Ontario farm and rely on two pet rats to get them out of trouble.

Tommy came up with the book idea when friends made fun of his sister, Melanie, who has Cornelia de Lange syndrome, a genetic condition.

Listen to this CBC radio interview or visit the family at http://www.2petrats.com/.

Sunday, March 27, 2011

Silent Sunday

Friday, March 25, 2011

17 years tomorrow


I've written recently about parents who take planned breaks from caregiving as a means of respite and regeneration.

Today, a mom at Spirited Blessings posted about her own retreat, which included watching this video The Power of vulnerability. In it, University of Houston social worker Brene Brown talks about how her research into shame led to a surprising discovery: people who embrace their vulnerabilities believe they are worthy of love and belonging.

Among people who have a sense of worthiness -- as opposed to those who never feel 'good enough' -- she found these common attributes: they had the courage to be imperfect; they were kind to themselves, and then others; they were willing to let go of who they 'thought' they should be in order to be who they were; and they believed that what made them vulnerable made them beautiful. Vulnerability was seen as a necessary way of life.

These findings, Brown says, were in stark contrast to her belief in the ability of science to 'control and predict.'

When talking about courage, Brown uses the original definition (when the word first came into the English language from the Latin word coeur): To tell the story of who you are with your whole heart.

People who believe they are worthy of connection she calls wholehearted.

I think this has interesting implications for how we view disability, which is a visible form of vulnerability.

Thursday, March 24, 2011

Pediatrics article: How to get a copy

The editor of the Pediatrics article has told Barb that anyone can e-mail her to ask for a copy, and she can send them a PDF. So ... if you would like to read this journal article about the ethics of heart surgery in infants with Trisomy 18, please e-mail Barb at:


Thanks! Louise

Wednesday, March 23, 2011

Should babies with Trisomy 18 be treated?

Many of you remember our interview with Barb Farlow, who lost her baby daughter Annie (above), who had Trisomy 13, after she was rushed to hospital in respiratory distress. Barb later read Annie's medical records and learned a "not for intubation" order had been written without consent.

This month Barb co-authors a fascinating article in Pediatrics -- the official journal of the American Academy of Pediatrics -- that address the ethics of offering heart surgery to the parents of a baby with Trisomy 18. Most children born with the condition die in the first year of life.

In An Infant with Trisomy 18 and a Ventricular Septal Defect, Barb and two North American neonatologists respond to questions about whether heart surgery should be offered and, after a surgery results in complications and the child can't be extubated, whether life support should be withdrawn over the objections of his parents.

The article concludes with these comments from Editor Dr. John Lantos:

Cases of trisomy 13 or 18 highlight an area of deep disagreement. Most parents would not want an infant with these conditions. Many of them are grateful for the prenatal diagnosis that allows them to terminate an affected pregnancy. Others choose a different course and either forego prenatal diagnosis, or, as in this case, use the information to make decisions about obstectric and neonatal care. Doctors are similarly deeply divided; some feels that aggressive treatment is futile and should not be offered, and others defer to parents. Drs. Okah and Janvier reflect this professional disagreement. Ms. Farlow speaks for the parents who come down on the side of treatment. These cases raise the most fundamental questions about the value of life, the meaning of personhood, and the limits of parental and professional authority. Deference to parents is generally the right course unless the infant is clearly suffering from ongoing treatment that is unlikely to be of benefit. The doctors in this case did the right thing: they worked to find common ground. As often happens, the infant surprised everybody.

Read the article and tell us what you think. Louise

Tuesday, March 22, 2011

Transition update and links

Ben went to see a pediatric dentist at our children's hospital because he needs work done under general anesthetic (teeth extracted, cavities filled and teeth cleaned).

He's turning 17 this weekend, and after setting the surgery date in April, the dentist was quick to point out to my husband that "we won't be seeing him again after that."

It seemed a little premature, since he won't turn 18 for a whole year. That's when he's no longer eligible for pediatric services. The generally comprehensive, one-stop services we've come to rely upon will evaporate. Parents and youth with disabilities have likened it to falling off a shelf.

Over a decade ago, a major Holland Bloorview study showed a disturbing transition into adulthood that puts youth with physical disabilities at greater risk of developing secondary health conditions. After high school, the study found teens with disabilities were unable to get a job or continue their education, became isolated and sedentary, and couldn't find a doctor who understood their disability.

The LIFEspan clinic at Toronto Rehab was created to smooth the medical side of this transition. It gives young adults with disabilities a single point of access to comprehensive services from a nurse practitioner, a physiatrist, occupational, physical and speech therapists and a social worker. Unlike the "in and out" model of acute-care, the LIFEspan clinic recognizes that youth with childhood disabilities will need specialized, ongoing care throughout life.

But right now services at the clinic, developed by Toronto Rehab and Holland Bloorview, are limited to youth with cerebral palsy and aquired brain injury.

What was your experience like moving from children's rehab to adult services?

Here are some interesting links.

NJ to propose $10,000 annual stipend for families taking care of adults with developmental disabilities.

Paper cuts.

And you may remember the Gort family, who have two children with disabilities. Mother Gina went on a 10-day retreat on her own, as a form of respite. Now her husband, Tim, is taking his own respite, hiking to the top of a mountain at Great Smokies National Park. This family is setting the standard, I think, for what all parents of children with disabilities need, but struggle to get.

I can't wait to hear Tim post about his experiences! Louise

Monday, March 21, 2011

Author of 'Welcome to Holland' speaks

Ellen at Love That Max has posted an interview today with Emily Perl Kingsley (left), who wrote Welcome to Holland in 1987 about the experience of giving birth to a child with a disability.

Emily's son Jason (right), who has Down syndrome is now 36.

"Savor whatever experience you are fortunate enough to have," she says. "Make the most of the hand you are dealt. Try to find beauty in each day if you can."

Ellen's interview with Emily is worth a read. Louise

Friday, March 18, 2011

Postcard from Japan: Disability and disaster

Elizabeth Aquino posted a link to this fascinating piece by Suzanne Kamata: Postcard from Japan: Disability and disaster.

Suzanne is the editor of Love You to Pieces: Creative Writers on Raising A Child with Special Needs. Her daughter Lilia has cerebral palsy and is deaf and her family lives in Tokushima Prefecture, Japan.

You can follow Suzanne on her blog at Gaijin Mama.

Thursday, March 17, 2011

Triumphant return

Ben returned ecstatic from another training session tonight. He spent more time on the treadmill and used new equipment. D'Arcy said Ben really enjoyed it and felt a sense of accomplishment.

This is quite a contrast from the 50 per cent Ben received in physed on his last report card. I couldn't understand why he scored "good" in most of the related items (e.g. work habits) but did so poorly if the program is adapted to his disabilities (unless he refuses to participate).

I heard an interesting interview on CBC radio today about researchers who have developed exercise guidelines for people with spinal-cord injuries. This is a related CBC The National broadcast.

Queen's University researcher Amy Latimer followed 700 Ontarians with spinal-cord injuries for 18 months and found that over half reported no recreational physical activity at all.

"This is often more to do with the nature of the barriers people with spinal-cord injuries face in trying to exercise, rather than because of the nature of the injury," Latimer says, noting that many gyms don't provide accessible fitness equipment.

Next steps for Latimer's team are to look at exercise best practices for people with multiple sclerosis.

These guidelines are exciting, but we need accessible gyms and attitudes to go with them!

A couple of months ago I spoke to Holland Bloorview researchers about partnering with a fitness club to develop exercise programs for children with disabilities. We plan to brainstorm this idea.

I thought GoodLife, where Ben is a member, was a perfect fit because CEO David Patchell-Evans has a daughter with autism and has donated $4 million to autism research. But I heard from GoodLife that they thought the investment in equipment would be too high.

With new exercise guidelines for adults with disabilities, and with parents of children with disabilities eager to get their kids active, I believe an untapped market waits.

'Our hopes and dreams'

Holly Roos is an American mom to Parker and Allison, who have Fragile X.

A group of bloggers in the Fragile X community are nominating her for a CNN hero award, and I have to say I was moved by this video of her: We have hopes and dreams for our children.

You can read more about her here, and see how she is giving voice to the hopes and needs of families of children with Fragile X and developmental disabilities. Louise

Wednesday, March 16, 2011

'Just be kind'

Here's a pic of Ben (with brother Kenold) just after his first personal-training session at the club last night. As you remember, I wanted to sign Ben up at our club because his physiotherapy has ended and he really needs exercise. But, I was filled with angst about whether the club would be welcoming to a person with disabilities and whether Ben could even use the equipment because of his tiny stature.

Things in general went great last night. Ben's trainer is called Michael, and he's a very upbeat, positive, accepting person. The evening began with the monstrous stair climb from the lobby to the exercise floor. Michael felt this would be part of Ben's workout. And as Ben climbed one set of stairs, only to turn the corner to another, and another, a young man stopped and squatted down to cheer him on. "I hate these stairs too!" he said.

As Ben limped onto the exercise floor (we still don't have a lift for his shoe) and took in the flurry of bodies twice the size of his in a whir of movement on treadmills, bikes and elliptical machines, I felt a surge of pride. This kid has guts to keep going and keep trying despite the obstacles against him.

Michael took Ben for a walk around the whole gym -- as we're trying to build his walking endurance but he also wanted to show Ben everything. Then Ben did three minutes on the treadmill (Michael wants to start him slow). He got him doing repetitions on a cable machine (pulling his outstretched arms which were holding the handles back to his sides). Then he adjusted a weight machine for the arms and took some of the weight himself so Ben could do it. Finally, he had him do steps and stretching.

Everyone wants him to do well, I thought, as I sat on a bike, looking around. While there are elite athletes here, there are also people of all shapes and sizes, some of whom are just starting out. Everyone remembers what it's like at the beginning, I thought, when the shortest cardio session or lightest weights leave you breathless. Everyone is rooting for him, and he'll feel it.

As we climbed down all those stairs, people stopped to say hello or offer an encouraging word. Michael presented Ben with his new fitness bag.

Then Ben and D'Arcy showered and sat in the whirpool.

"I thought people were very welcoming," I said later.

"I don't think they really knew what to make of us," D'Arcy said, referring to Ben's appearance as a much younger child.

But it doesn't matter, I thought.

I'm sure there will be bumps, but Ben got to feel successful at working out. He broke a sweat, took a swig of a water bottle, and heard Michael praise and encourage him. He was ecstatic after his workout, no doubt because it got his endorphins going.

Later I was reading Buddhist nun Pema Chodron and she talked about this slogan from a Tibetan text: 'Be grateful to everyone.'

It's "about making peace with the aspects of ourselves that we have rejected," she said. "The people who repel us unwittingly show us the aspects of ourselves that we find unacceptable, which otherwise we can't see."

She talked about a meditation student she worked with who was making great strides recovering from a drug addiction, then went on a binge. When she expressed disappointment to her spiritual teacher, he got angry. "You should never have expectations for other people," he told her. "... Setting goals for others can be aggressive -- really wanting a success story for ourselves. When we do this to others, we are asking them to live up to our ideals. Instead, we should just be kind."

That really hit home in terms of parenting a child with disabilities. 'Just be kind' sounds like a great starting point -- for the way we interact with and support our children, and the way we treat ourselves as parents, without judgment. Maybe it's my own struggle with success, I thought, that makes it hard for me to accept the unconventional path Ben is on. Maybe that's something I need to look at more closely.

I got goosebumps watching this video tribute to Zack Hamilton: Paul's video tribute to Zack. Louise

Friday, March 11, 2011

Remembering Zackie

Please stop by Heather Hamilton's blog to read this beautiful tribute to her son Zack.

I'm so grateful I got a chance to meet Zack and Heather by chance at Holland Bloorview recently.

Feel the fear, and do it anyway

When your child has disabilities, there are times when you feel vulnerable and exposed.

February and March have been those kind of months for me.

It started with Ben’s psychological assessment – something I’m confident strikes terror into most parents of children with learning problems.

You hand your child over, not certain what the outcome may be, yet knowing how an IQ score can close doors, lower expectations and marginalize your child.

To get around that, we didn’t do IQ testing. Instead we looked at where he is academically, and at least in terms of reading, there was some good news.

Next month we have an IPRC to look at Ben’s school placement. I anticipate this with some trepidation because I’m used to being told that no good options exist for my son and his complicated needs.

On the one hand, I want a program that focuses on literacy and numeracy, and that can’t happen in the life-skills program he’s in now. But on the other, I worry about the stress of a new program on such a complicated kid (better the devil you know, they say). At least in his current program he’s safe.

I’ve wrestled with whether to hire an advocate for the IPRC, but at this point I’m hoping his regular psychologist can attend.

I've booked a session with Community Living to bring people together to help Ben plan a rich life. I’ve been told about the benefits of ‘circles’ of support since Ben was four. But I’ve always avoided the need to ask others for help – to make myself openly vulnerable.

With Ben turning 17 later this month, I don’t have that luxury anymore.

But there’s a part of me that would rather pretend that we’ve got everything under control and can manage on our own. A colleague once surprised me by saying: “You’ve handled everything so beautifully with Ben, not all families do.” And I thought: “If you only knew how it feels on the inside sometimes."

Ben’s weekly physio just came to an end. He’s been doing physio since his major hip and knee surgery last year. He’s at a point where he needs an exercise program, but he doesn’t need the expertise of a physio.

I work out at a club, and I thought it would be a great idea to get him a membership. His physio agreed. But then I had to think about the comfort level of this club. I’ve never seen anyone with a disability there. What if they weren’t willing to take him on? What if the other members weren’t welcoming? What if people I knew there were surprised to see I had a son who was different? What if they couldn’t believe he’s 16, going on 17, when he looks about six years old?

I put my confident face on, met with a club rep and signed him up. He’s going to have some personal training sessions after March break. He won’t be able to use most of the machines because of his tiny stature, but the treadmill will be good for him, and I’m hopeful he might be able to do some light free weights. But to be honest, I’m petrified. He’ll resist it at first, but I’m hoping he’ll start to associate it with the exercise ‘high’ he gets following physio. And I want him in a mainstream setting. It seems that the only programs open to him now are segregated.

I’m going to meet with someone at Community Living next month to learn about what services are available to Ben as an adult. I don’t want to do this, because I don’t want to acknowledge that he is almost an adult, and that he won’t have the same opportunities as other youth to make choices about his life. I don’t want to put him on wait lists for segregated programs I don’t believe in.

I’m still hopeful that somehow we can carve out a meaningful life for him without relying solely on traditional services. But I know we have to cover all the bases.

I’m also looking for a reading tutor for Ben. Because he can’t get the reading instruction he needs at school, I’m hoping to find a tutor. But as soon as I start explaining the fact that he doesn’t speak and uses sign, it tends to flummox people. I have to ignore a negative voice inside that says 'it’s too late.'

And I’m meeting with a life-skills coach here about whether Ben could attend a program in the summer. They include things like learning to take transportation, cooking and making friends. I kept putting off this meeting because I was afraid I would be told that Ben was too disabled to attend. So I e-mailed the coach explaining my fear. She spoke to another colleague who worked with Ben at a sailing program and they suggested a program called Making it happen – which is the first in a series. I hope it will work out.

And remember that blog I wrote about Scrabble the other week? I sent it to my brother. He responded in a very open, compassionate way, and we’re meeting next week to discuss further. But...I’m afraid. It's easier to keep up a pretence of invulnerability.

I chose the picture above because it was taken just after I lost my hair to a bizarre auto-immune disorder called alopecia nine years ago. Talk about exposure! For a month, I stopped going to the exercise club, because I didn’t want anyone to see me bald.

When I finally did go back, I wore a hat. But in the change-room, I knew there would come a time, after workouts and a shower, when I’d have to take the hat, or a towel, off my head. I would unwrap my head and in my mind I would count to 10. That was the extent of how long I could handle that vulnerability at the beginning.

I liken all of these steps I’m taking with Ben to removing my hat and acknowledging who I am.

Hopefully, in time, taking these risks with Ben will become easier, in the same way that I can now move comfortably about the club change-room – without my head covered!

Thursday, March 10, 2011

Heavy hearts

I am very sad to let you know that Zack passed away last night.

His mom Heather called him 'Zackie,' and his spirit shone through everything she wrote about her family. Read more at Please share your stories about Zack. Thank you for your support, Louise

Wednesday, March 9, 2011

Hold them in your thoughts

Last month this piece on marriage by Heather Hamilton resonated with so many of you.

Heather's son Zack (left) is in the cardiac ICU at SickKids right now. Please hold him, his mom and his family in your prayers and thoughts.


Life plans

I found this fabulous website called Connectability.ca.

It's run by Community Living and has great information for children and adults with developmental disabilities.

I particularly liked this presentation about Person-directed planning.

In a month, we are doing a life-planning session for Ben with Community Living facilitators. We will be using a tool called Passport. If you go into the presentation above, click on 'launch,' then 'accept,' then 'tools' and then click on 'Passport.' They have a nice overview of the content covered. Louise

Monday, March 7, 2011

When friendships fall apart

I met an amazing family here a number of years ago, after their son had a stroke. More recently, the mom of this family shared that the most painful aspect of her son's brain injury was his subsequent loss of friends. I'm very grateful that this parent has put pen to paper to share her experiences with us! Louise

It's with great interest that I've been following the stories shared by parents who find themselves filled with sorrow over the friendship difficulties experienced by their 'different' children and thought I'd share mine.

My son suffered a severe brain injury at age eight. On the outside, he was left unable to use his right side and now uses a brace to walk. He's unable to participate in most sports and in this two-handed world, he often needs assistance. On the inside, his processing speed was slowed, so classrooms, fast-paced conversations, movies and books all present a challenge to him. Crowds and noisy areas now bother him, which means busy school settings, crowded malls and even large family gatherings make him edgy and anxious. He had to relearn a lot of the social nuances that we take for granted, a process which is ongoing. Over the last seven years he's learned strategies for coping with most of these and I'm really proud of the strides he's made and the person he's become. While I think his challenges have made him empathetic, kind and mature (that is, relatively speaking for a teenager!), they have also created barriers to acceptance and friendships with his peers.

Before brain injury, my son was incredibly bright, a gifted athlete, and extremely popular with his peers and teachers. Even at eight years old, he was the 'go-to guy' with his quick smile, positive outlook and caring personality. In the `after,' he couldn't play hockey, participate on school teams, or keep up with others in the schoolyard (they ran everywhere!). When you`re an eight-year-old boy, this is a big deal, as not a lot of time is spent conversing or playing quiet games. Boys roughhouse, race, climb monkey bars and ride bikes.

At first his friends were supportive and visited often. However, as time went on, between his physical limitations, communication deficiencies and the realization that this wasn`t just a broken leg that would heal, they grew impatient and started to drift away. He started finding himself alone at recess and after school. He attempted to maintain contact with them but they were too fast in every way! While I understood the mechanics of this alienation, I couldn`t help but be saddened that we are so often unable to rise above this kind of ostracization when one of our own is in need. Of all the things our family dealt with as a result of the brain injury -- this lack of friendships was the most difficult challenge to face and caused the greatest pain.

Here in the `after,' it became my mission to make my son's friendship situation better. I encouraged him to define what friendship meant to him and to think about the qualities that would make a good friend. Even though he could see that many of his previous friends hadn`t demonstrated these qualities, he still missed the camaraderie and busyness of being with them.

I sought out opportunities to pass the time and to hopefully lead to the building of new relationships. Despite his physical limitations, my son thought of himself as an athlete and felt very little interest in other milder amusements. This presented a challenge: most adapted sports are for horizontally-limited athletes where my son was vertically limited (think unable to use your legs vs unable to use the arm and leg of one side of your body). We persisted and encouraged him to at least be open to new experiences. He joined a drama group and successfully played his part in the final performance. He took voice lessons and learned to play the drums one-handed in case he might one day want to form a band with classmates! He joined a youth bowling league which I found to be one of the most welcoming of able-bodied sports. In addition, I kept in touch with friends he had made as an inpatient in rehab and invited other children over when possible (even if they were only cousins or my friend`s kids). I just wanted to make sure that he had every opportunity to interact with others and to practise improving his social skills. And then finally, I found a paraswim team which offered him total acceptance, support and friendship! It also allowed him to strengthen his weakened body and to once again achieve athletic success.

My son survived elementary school only to have to start all over again in high school which at best is a battlefield for even the most talented, strong and beautiful, let alone the less than perfect! He`s been called 'cripple' and had his limp imitated. He`s clearly been shunned from many of the social groups and has felt the pain of being on the outside. Nevertheless, he refocused on our old conversation around friendship qualities and persevered until he found some classmates fitting the bill. Although his friendships are almost exclusively female (and I think that male friendships will continue to be a challenge until they mature into adults where the number of goals you score or how high you can jump becomes less important), he has come to embrace the relationships he does have in his life which include family members, teammates, coaches, teachers and other community members that he interacts with on a daily basis.

I think my son and I have been forced to embrace and appreciate all of the friendships that we are so fortunate to have in our lives. Friendships come to us in all shapes and sizes and may not always be exactly what we have in mind when we start the journey, but they are what makes the journey worthwhile.

Friday, March 4, 2011

Welcome to the club

I'm delighted to share this guest blog from Marcy White (above right). Marcy recently joined our family leadership program at Holland Bloorview. This program sees parents advise on hospital policies and programs, mentor other families and share their health-care story and insights in education forums with staff and students. If you are a Holland Bloorview parent interested in this program, please let me know. Thank you Marcy!

Welcome to the club
By Marcy White

I belong to a receptive and supportive club which I joined unknowingly. At various times, our members are experts and novices, advisers and information seekers. My alleged area of expertise has nothing to do with my university education or employment history, and everything to do with raising my son, Jacob (above centre).

I am a reluctant expert on gastrostomy feeding tubes, also known as g-tubes, and all their accoutrements. G-tubes are surgically implanted holes in people's abdomens where tubes are inserted so that liquid nutrition and medication can be fed directly into the patients' stomachs, bypassing their mouths. I'm not proud of being so well informed about this particular topic but I amassed this information because I had no choice. My son, Jacob, has had a g-tube since shortly after his birth, almost nine years ago.

Recently, I found myself speaking with a scared and overwhelmed mom whose child was abruptly shoved into the world of 'alternative' feeding. During our conversation I remembered the feeling of relief I experienced the first time I was introduced to a member of what I have termed the Parents of Children with Medical Issues Club (PCMIC). And I recalled how comforted I felt to know I wasn’t alone. If I was able to provide some insight and information to this mom whose world was only recently turned upside down, I welcomed the opportunity.

When Jacob was born, he had difficulty breathing. At just a few minutes old, he was placed on a ventilator and started down a very long road of medical battles for his life.

When I went into the neonatal intensive care unit to feed him on his second morning, I was surprised to see my tiny son with yet another tube running out of his little body. This one was a two foot long naso-gastric (NG) tube coming out of his nose, taped in place to his soft cheek with a white bandage that covered almost the entire right side of his face. The nurse, noticing my appalled reaction, explained that this tube would function to deliver my pumped breast milk directly into his stomach because he couldn't swallow without choking. In shock from the unexpected complications following Jacob's birth, I watched as the milk slid into his body, drip by drip.

When Jacob was six weeks old and still in the hospital, the doctors approached us about having a hole surgically cut into his stomach so that a tube could directly administer his nutrition, a more permanent solution than the NG tube.

When I saw Jacob post-surgery I barely recognized my little guy. Since his second day of life, he had a giant white gauze-like bandage covering half his face. Walking over to his crib, I saw an adorable little baby with a full head of dark brown hair and pudgy cheeks. Two of them. Seeing all of him was the first positive thing about this surgery. I could kiss both sides of his face and feel his warm cheeks.

I learned how to care for my son. I received intense, on-the-job medical training from the nurses during Jake's three-month hospital stay. My education was from trained professionals. But I felt isolated – I didn't know anyone who had a child like mine, one who struggled each day to breathe, to move, to grow. I was alone.

Three years later, Jacob's medical issues had stabilized and taking care of his needs had long become routine. Through mutual friends, I was given a phone number of a parent with a child a few years older than Jacob who had similar medical challenges. With the hope of gaining some insight from a more experienced parent, I called Jeff.

One evening a few days later, Jeff and I were sitting in my kitchen discussing our common experiences and struggles as my husband, Andrew, mixed Jake's meals for the following 24 hours – six containers of infant formula, each one with a different ratio of powdered formula to sterile water. When Jeff noticed how time consuming and labor-intensive Jacob's meal-preparation was, he explained what his son ate and how much easier the process could be. Jeff shared pertinent information with us that nobody else had. The medical professionals didn't hold back these details on purpose, they just didn't know them.

I've learned that the best source of information is other parents who are in similar situations. My initial contact with Jeff didn't happen until Jacob was three years old and we had been struggling on our own for his entire life. I now know how helpful it is to seek out parents who have been through what I'm experiencing. The hardest part is finding the first person. After that, it gets easier. The PCMIC is a group that anyone with a child with challenges can join and benefit from the extensive and assorted experiences of others who are willing to share.

When I was given the opportunity to be the first experienced parent to speak to the mom new to my world, I welcomed the chance. I wanted to be able to do for her what Jeff did for me. I wanted to show her how supportive our club is.

Every Kindergarten Kid Matters

Check out Every Kindergarten Kid Matters, a video campaign to ensure that Ontario's move to full-day kindergarten includes the supports and services needed for children with special needs. The campaign is spearheaded by the Ontario Association of Children's Rehabilitation Centres.

Thursday, March 3, 2011

Separate is not equal

Last night we have a visit from a woman from Community Living. We were signing Ben up for an after-school respite program that runs once a week. Ben and two other students from his class will go to a nearby community centre that offers an after-school program of games, sports and arts for youth with developmental disabilities.

I’m grateful for this program – and how Community Living has planned to have sign-language interpreters and one of the sign-language assistants from Ben’s school participate. But I was disappointed that it is an entirely segregated program.

It reminded me of a study I’d just read about of 653 people with mild and moderate intellectual disabilities in the Netherlands. It was published in the Journal of Intellectual Disability Research in January. It found that while most participants had work or other daytime activities, social contacts and did things like go to a restaurant or movie for fun, the majority have almost no contact with people without intellectual disability. “From a human rights point of view, it is undesirable that people with intellectual disability have lower levels of community participation,” the authors note.

It seems that this segregation starts early in programs that don’t include children with and without disabilities. It also seems to me – with typical students needing to fulfill community service hours in high school – that there could be ways to involve students without disabilities in these programs.

For those of you who read our December print interview with Amy Baskin about preparing for the move to adulthood for youth with developmental disabilities, you’ll remember Amy said the first step was to “find out what services for adults with developmental disabilities exist in your area. Ask your children’s treatment centre or call Community Living to found out who manages developmental services."

I’ve been meaning to do this for Ben, but hadn’t taken the plunge. I was pushed along last night when the Community Living lady said one of her colleagues could come out to talk to us about developmental services. "After all, he is almost an adult," she said, noting he was turning 17 at the end of this month. An adult?

There is a part of me that doesn’t want to get the information because I don’t think I’ll be happy with the options. But I know I need to follow through!

I thought this New York Times story about Arthur and Friends, a project of three hydroponic greenhouse where adults with developmental disabilities learn to produce ‘dirtless’ produce for farmer’s markets and restaurants was interesting. The founder of the program had a nephew with Down syndrome who was looking for more meaningful work: “When he told his aunt how bored he was, toiling in a sheltered workshop popping dog treats like pigs’ ears into plastic bags for five hours a day, they began discussing how he might find a more rewarding job.”

Again, wouldn’t it be great if the program was somehow made inclusive?

On another note, some of you may have been following this story of a family in the UK with a six-year-old daughter who requires 24-hour care, seven days a week. Her parents were at breaking point and wanted to access three hours of daily respite, which they felt would enable them to continue caring for their daughter at home. Mother Riven Vincent speaks with the BBC in this radio interview: David Cameron has let parents of disabled kids down.

Ellen at Love that Max posted yesterday about her experiment to try to get people to stop using the word ‘retard’ on twitter: If you ask people to not use the word retard. She has guts and stamina. Read about it.

Here’s another sobering piece about hate crime against people with disabilities: The Invisible Hate Crime.

And finally, last night I could be heard screaming in front of our new Mac computer. But it was a scream of joy, as I realized I had successfully transferred the vocabulary from Proloquo on Ben’s iPad to his iPod (a first!).

We had been using the wrong instructions before. Armed with the correct instructions and moving step by step, the mission was accomplished.

So now I can modify the vocabulary and keep it updated on both devices.