Monday, May 31, 2010

'The shoes are too big'


Angela Amick lives in Ringgold, Georgia and writes at My Three Sons about life with Andrew, 4, Benjamin, 2, and Thomas -- just two months! Following is part of a post that appeared recently on her blog, with the photo of Woody above. It's a moving, honest piece about loving your child but struggling with aspects of your child's disability. I think we can all relate to sometimes feeling like 'The shoes are too big.' Thank you for sharing Angela! Louise

'The shoes are too big'
By Angela Amick

Obviously, my son Andrew didn't mean for this photo to conjure up all kinds of thoughts in my mind.

Woody just needed to get someplace and these were the closest boots. Thankfully for him, they matched his outfit.

But it got me thinking about shoes.

And wearing shoes that are too big.

I thought about expectations.

That others set for us.
That society sets for us.
That we set for ourselves.

Finding out that my son Benjamin has Down syndrome was hard. Open-heart surgery at five months was hard. Last winter with all the illness was hard.

But those things feel like the tip of the iceberg.

Because now, at two years old, I feel like the true challenge has begun.

It's so difficult to have a child who is 25 months old and can get around like a 15-month old, but can only understand and communicate like a nine-month old. Because he has all these physical capabilities but can't communicate.

He doesn't understand me when I ask him to be quiet because baby Thomas is asleep.

I don't understand him when he sticks his fingers in his mouth (no, he's not teething) and does this half-whine/half-cry thing.

He knows about three signs and no words. He only uses those signs ("brush teeth," "more," and "play") when we prompt him continually. He never communicates with us. And we can't communicate with him.

And the noise.

I had to order Thomas a sound machine for his room because Benjamin's noise levels throughout the day cannot be contained. If he's happy, if he's mad, if he's bored...he will be loud. Not all the time, but enough where it is just too much. And he is not at the age where I can tell him from across the room to quiet down. I have to drop what I'm doing (which is not easy or even possible at times), go to him, pick him up, comfort him, give him a pacifier, or just remove him from the room.

When we put him down for bed at night (between 7:30 and 8:00), he plays in his crib until 9:00 or 9:30.

Crying.
Laughing.
Fussing.
Banging his feet against the slats.
Running around in his crib.
It is loud and there is absolutely nothing I can do about it.
Every. Single. Night.

I can't really make sure that he expends more energy right now. I can't take him outside unless it's one-on-one because he requires that much attention. I am very rarely able to give one-on-one attention to any of my kids right now.

You know how when you have a new baby, you go through a phase where you just kind of move them from one "station" to the next?

Bouncy seat to swing to play mat to crib.
Rinse, lather, repeat.

Well, that is essentially the story of Benjamin's day.

When he wakes up at 6 a.m., which is an hour earlier than the day officially starts in our house, I don't really know what to do with him.

I can't let him just be. He doesn't know how to just be.

He loves to be mobile. He loves to run/bear crawl/walk around. But that can only happen if I am able to keep a close eye on him. But more than that, he tires of it fairly quickly. And he gets LOUD. Then what?

All day, I move him from the playpen (with toys) to the high chair to the bonus room to the crib. Over and over. He does really well playing by himself in the bonus room (with the gate up). But then he's just in there by himself all day. Talk about a guilt trip.

He is a baby.

And I am tired.

Not just physically, but emotionally and mentally as well.

The mom with a child with Down syndrome has some dang big shoes.

And I don't think they fit my feet.

I know they say everyone has their own timelines.

But I feel like I should be better with this by now.

More accepting.

More, "Oh, his milestones take a long time but they're so celebrated" kind of thing.

More "The DS makes him who he is" kind of thing.

Right now, that's all just crap to me.

I am over it.

I'll say what's been on my heart for days and days and days.

I hate Down syndrome.

I just don't get it.

I look at my sweet son, whom I love SO very much, and I wonder.

Why does he have this?

Why does this even exist?

What is it about this extra chromosome that makes it so he can't talk? Can't understand? Can't be typical?

A few months ago, my husband Matthew and I were talking about the fact that Benjamin is so delayed in certain areas. About how really and truly, it is okay. But then I started wondering--why is it okay? Why do we say that it's okay?

And Matthew and I came to the conclusion that it's okay, at least for us, because it has to be. We don't have a choice. And so we say it's okay.

I know the "right" answers of course.

That it just is what it is. We learn from it, we grow from it, we love because of it.

But lately I just don't care.

Yes, Benjamin is very sweet and cute and can make anyone smile.

But I want my son to be normal.

I want him to say "mama" when he's supposed to and to understand that that's me, darn it.

I want him to know that when he's standing in the tub in his shorts and I am trying to hold him up because he is covered in poop, that he needs to lift up his feet so I can remove his shorts.

All I wanted was for him to lift up his feet! One foot at a time. But he doesn't get it.

I hate it that I am bothered by all of this. I should be okay. I should be more loving, more accepting, more patient.

I know it's not his fault. But it is hard sometimes not to feel resentment. I feel like such a hypocrite when I think in my head: "Why don't you get it???" Because I know why. And it should be okay.

The shoes are too big. The expectations are too lofty.

I know all of this is extra hard right now because I just had a baby and my husband has been gone a lot.

But it's still my reality and it still sucks.

I receive many offers from people to help. Very well-meaning offers. And they make me smile and feel loved.

But there's really not much anyone can do right now except for, say, my mom and my husband. And they're not always there.

And they can't ultimately do what I'd like for them to do.

To make it all just be better. To take it all away.

And so I am going to go crawl into bed and have a good cry.

Right after I take Woody out of those ridiculously large shoes.

Because it's impossible to move forward when your shoes don't fit. Even if they do match your outfit.

Friday, May 28, 2010

Gardening program brings nature in


I wanted to share this picture of Ben and I which our wonderful photographer William took the other day. As you can see, Ben is smiling again. He's being weaned from his pain meds and saying goodbye to some of their nasty side-effects. He's becoming much more like himself and enjoying the activities at Bloorview.

Last night he and D'Arcy did some gardening on the third floor terrace of the complex-continuing care unit (CCC). He planted beans and built a lattice for them to grow on. Think about that for a second. Ben is on the unit for orthopedic rehab, but a gardening program was taking place for kids with the most complex medical conditions -- many of them using ventilators -- on the other side of the building, and Ben joined in.

The kids on the CCC unit require nursing care and arranging a trip outside is challenging. So the garden is brought to them. One minute they're on a hospital floor and the next they're on the terrace, with the sun on their skin, tending a garden and experiencing nature. A raised bed allows kids to wheel up to and access the soil from their chairs. Isn't that brilliant?

Wednesday, May 26, 2010

C'mon Papa


Today we have a book review from Waterloo Vice-Principal Cindy Matthews. Read more about Cindy at the bottom. Thanks! Louise

C’mon Papa: Dispatches from a Dad in the Dark
by Ryan Knighton
Random House of Canada, 2010
Review by Cindy Matthews


Books about moms raising their children are a dime a dozen. There are a limited number of books from the dad’s perspective. C’Mom Papa: Dispatches from a Dad in the Dark is truly unique in the field. It’s written from the perspective of Ryan Knighton, a father who’s blind.

Ryan is the author of an earlier book, Cockeyed, a memoir of ‘going blind, growing up and getting both wrong.’ He teaches at Capilano University, writes for a host of magazines, speaks at universities and corporations, and is working on another book. According his website: ‘there's more bio, but we're too lazy to bother with it. You get the point: he's a blind guy and an over-achiever.’

C’Mom Papa is extremely funny and honest. Ryan does an insightful job of putting us in his shoes so we can navigate his life as a husband and later as a new father. Most of the story takes place in Vancouver, Canada.

Imagine moving to a new house. We’ve all been there, tripping over stuff because the place is unfamiliar and we can’t remember putting the dang things there. Now imagine you’re blind. You don’t only have to learn how to maneuver by high-stepping throughout the house, white cane tapping or groping everything in and around you, but you have to learn to navigate a brand new neighbourhood, too. Stressful? You bet. Talk about a fear-factor moment.

Eventually both Ryan and his wife, Tracy Rawa, decide to get pregnant. Unfortunately the first pregnancy is molar, causing a benign tumour. Tracy has to endure a treatment similar to the regime for ridding the body of cancer. We learn how challenging it is for Ryan to ‘watch’ his wife go through this torture. He feels helpless. He can’t do what a ‘normal’ husband would do, like drive her to appointments. The parenting journey grinds to a halt for a year after treatment to ensure a healthy uterus.

The second pregnancy is not without anxiety. Under the supervision of a midwife who happens to be Ryan’s ex-girlfriend from high school, the soon-to-be parents learn that there’s a small risk of their baby having Down syndrome. They decide to have amniocentesis. As he accompanies Tracy through the hospital corridor, Ryan distracts himself from his fears by wondering about the other people in the corridor. Are they thinking he’s bizarre because he’s wearing a t-shirt with the f-bomb plastered on it? About awaiting the results of the test, Ryan explains: “Sentimentality is not a helpful form of pretend.” After they learn the baby does not have Down syndrome, it occurs to Ryan that he and Tracy never discussed the possibility of the baby being blind. He uses a great analogy to describe waiting for news when you’re blind. He felt like he was joining all the other waiters, time measured by the clicking of knitting needles and the flip-flip-flipping of magazine pages.

The year of waiting for the birth of daughter Tess is at times torturous. “What worried me most…was that I had so little sight left that I could easily say goodbye to it before I got the chance to glimpse the tiniest bit of my son or daughter,” Ryan says. “I wanted to piece together what I could of that face before that opportunity was taken from me for good. A year of waiting could disappear my baby from me before it had even arrived.”

Before the birth, Ryan was asked if he wanted to know the sex of the baby. Knowing might help prepare him for playing with his child. From his memories of being a boy who played, he knew boy play would be rough on a blind guy. He asked his sister how and what girls played. When she was young, she says, she would play a game called ‘coma’ and she also loved collecting cigarette butts.

When the midwife asks Ryan if he wants to catch the birthing baby, he defers the duty to her. He worries that he can’t console Tracy during labour and delivery, which he compares to ‘delivering a planet out of a straw.’ Once Tess arrives in the world, I was struck by some of the practical implications of parenting a child without sight. There’s a sad, underlying revelation that Ryan is ‘more a visitor than a father,’ fearful to pick up Tess, asking his wife for permission. Near the book’s end, Ryan reveals that his job is to learn to ‘read’ his daughter, to discern which sounds she emits contain the really critical information.

Parents of newborns can relate to the changes that force them outside of themselves, giving totally to those little poopy, crying, needy people! Now imagine becoming a parent while wearing a blindfold. Envision never being able to see your child’s face, ever. Or, how do you check to see that you fully and effectively wiped your child’s bottom during a diaper change? Then picture trying to get your child to daycare on a snow-day in a city unprepared for winter’s folly. That’s Ryan’s life.

This is a highly enjoyable, funny, ‘real’ read into Ryan’s journey into the first year of fatherhood. It’s definitely a book for adults, not kids, in that throughout the book the author throws images and language that are colourful to say the least. Don’t let that stop you. Run to get a copy of this well-constructed story, written without pity as the focus. Ryan demonstrates that he can indeed ‘see’ the emerging relationship between father and child.

Cindy is a vice-principal of Section 23 (care, custody, treatment and corrections) programs in Waterloo Region in Ontario as well as an enrichment centre for children in grades 1-8. Her daughter is entering fourth-year university and has attention deficit disorder. Cindy also teaches online special-education courses for Queen’s University in Kingston. Before becoming an administrator, Cindy assisted students with autism spectrum disorder diagnoses to be integrated into classrooms in elementary and secondary schools in Waterloo Region. You can read more of Cindy’s work at www.cindymatthews.ca.

Monday, May 24, 2010

'Who can I be mad at?'


I started this Saturday and finished Monday.


'Who can I be mad at?'


Ben had a great day yesterday. He went to school in the morning and afternoon, relaxed in the snoezelen room, went to the library and was quite happy, much closer to his usual self.


His worker Sallyanne is wonderful with him: she empowers him.


Today was another story. Perhaps my perception is off because I didn't sleep well. The hospital is deserted because it's the long weekend. It's usually packed on a Saturday morning with kids coming for swimming lessons. Typically we'd sit at the floor-to-ceiling window above the pool, watching with everyone else. I'd tell Ben that one of the first things he's going to do when the cast comes off is go in the pool. Then we'd walk by the creative arts studio and perhaps stick our head in to join a music circle. If it was nice, we'd go for a walk outside in Spiral Garden.


But today because of the holiday there was no swimming or art and none of the usual bustle of people coming and going in the hospital. It was raining, so we couldn't go outside. I couldn't get the video game to work in the teen lounge and another child was playing the Wii that Ben likes. We watched for a while, but we soon ended up back in Ben's room. Then I remembered that Ben still hadn't had a bowel movement. The narcotics he's on freeze the digestive system.


The nurse and I decided he needed a suppository, which of course he didn't want. I explained why he needed it, but he still signed "no" and "stop." And I felt so bad for his powerlessness, lying there in a body cast and having this procedure "done" to him. Some friends stopped by, but by this time Ben was sweating profusely and uncomfortable.


And afterwards I couldn't stop thinking about their healthy child and being furious that this is happening to Ben. I was raging at all of the indignities and pain and discomfort of the last six weeks, which then segueways into all of the hard things life has dealt Ben over the last 16 years. "It's just not fair," I will later sob to D'Arcy. I'm mad, but who or what can I be mad at? Life? His disorder? There isn't anyone or anything I can direct my anger at.


So I just carry it around. And thankfully, something always shifts. I spend a couple of hours away and when I return Sadora tells me that Ben had an awesome time playing Wii and I can see he's happy again. I stayed at the hospital last night and we went for a long walk outside and blew seeds off old dandelions and made wishes. And today Sallyanne brought her adorable seven-month-old daughter Grace for a visit (in photo above). It took her 90 minutes to get there by TTC. Can you believe it? It really touched me that on her day off she would come for a visit. Because it made Ben very happy.


Friday, May 21, 2010

When sleep eludes your child



Imagine your six-year-old child gets up at 1 a.m. four times a week, and won’t fall back to sleep till 5 or 6 in the morning.

Relatives want you to visit, so you book a hotel and make the three-hour drive. But at 1 in the morning the first night, your oldest son wakes up, begins pacing round the hotel room, and wakes up his younger brother. Knowing nobody will sleep this night, you pack up your stuff and hit the highway for the three-hour drive home at 2 in the morning.

This is real life for Bethan McCutcheon and her husband Sean, whose sons, Tecwyn, 6, and Tathan, 5, have Angelman syndrome.

Sleep disorders are common in this genetic condition, and according to a Belgian study include falling asleep later, repeated night-time wakings, and reduced rapid eye movement or deep sleep. Despite little sleep, children are alert and active during the day.

While Tathan sleeps most nights, Tecwyn is often up for four to five hours in the middle of the night. I interviewed Bethan to find out how the family copes on such little shut-eye.

BLOOM: When did Tecwyn first develop sleep problems?

Bethan Mccutcheon: It was at about a year old, when he stopped napping during the day.

BLOOM: What kind of sleep problems does Tecwyn have?

Bethan McCutcheon: We can put him to bed at 9 and he’ll get up anytime after 1 in the morning. In a nanosecond, he’s upright, down the hall, squealing and excited to start the day. He’s very happy. He may go back to sleep at around 5 or 6 in the morning, or he may not.

BLOOM: What do you do during the night?

Bethan McCutcheon: I often take Tecwyn back to his bedroom and put the indoor lock on his door and stay in the bedroom with him. He’ll pace in his room and take stuff out of the closet and dressers, and occasionally read a book. We have the room set up to be safe. I stay with him, usually for about four hours, till he’s gotten it out of his sytem, and then I can sometimes get him back to sleep at around 5 or 6. If not, I wake my husband up at 5 and I go to bed for two hours while Sean takes Tecwyn down to the playroom. He wakes me at 7 so he can get ready for work.

BLOOM: What is most challenging about Tecwyn’s sleep problems?

Bethan McCutcheon: It can be exhausting. You have to work as a team with your partner and be honest with what your limits are. If I’m tired, I do something about it. After a bad bout of sleep problems last year I drove to my parents’ house, three hours away, and showed up at midnight and went to bed for 16 hours. If we have a bad week where I’m up on consecutive days, Sean takes the kids on Saturday morning and I sleep in. We’re fortunate in that I home school the boys, which means if I can get Tecwyn to settle at 5 in the morning, he can sleep until 9 or 10. A lot of families don’t have that flexibility. They have to get back up at 6 in the morning to get the kids off to school. I can see why marriages fall apart over this. Not only are you dealing with everything about your child’s special needs, but you’re doing it with no sleep. We’d like to have a second source of income, but there’s no way I could work from 3 to 11 because then I could be up all night. Sean tried to drive a snow plough as a second job but if he had to get up at 4 in the morning, he might have already been up all night.

BLOOM: What strategies have you found helpful to promote sleep?

Bethan McCutcheon: We do a bedtime routine each night and on my answering machine I ask people not to call the house past 7:30. That’s when they have a nice warm bath, are powdered and lotioned up, brush their teeth and take their reflux medicine. Tathan can go straight from bath to bed, but Tecwyn likes to come down to the playroom to sit on the couch and snuggle and watch half an hour of the Disney channel. Then we bring him upstairs and one of us lay down with him until he falls asleep. That could be within 15 minutes or longer. Sometimes when Tecwyn gets up in the middle of the night I’ll repeat the whole bedtime routine again – but at 3 in the morning. I have a lock on the inside of his door just in case I fall asleep, but I never do. I stay with him and let him do his thing and I lay on his bed. If I’m very tired I’ll get Sean, but I try not to get him at first.

BLOOM: How do you manage on so little sleep? Doesn’t it affect your mood?

Bethan McCutcheon: It’s become our norm and most of the time I’m upbeat and positive. We have a system that works for us and allows us to catch up on sleep and plan the day according to how Tecwyn has slept. It would be very difficult for us if I had to work and take the kids to school at 8 in the morning. The only time our situation is really hard is when we’re away from home. Our family lives three hours away and wants us to visit, but we don’t have the coping mechanisms there – the set up of the house and the playroom – that we have here, and everything falls apart. We’re also limited in that we can't go out together, like on a date night. The only time we tried, Tecwyn stayed up with my parents until we arrived home at 2 in the morning. And we can't go out on our own. Sean can’t go away for a golf weekend and I can’t go out for a girls’ night. We’re a big part of each other’s coping mechanism and we know if one of us goes out we’re throwing the other person under the bus.

BLOOM: Do you find people understand Tecwyn’s sleep problems?

Bethan McCutcheon: Unless you’re living this, it’s very hard to understand. People give us all kinds of advice and sometimes people make negative comments. It’s hard for people to believe that a child can be up a good part of the night and still be the Duracell bunny the next morning. I always envisioned my life would be different at this age. I had a goal of becoming a school principal by the time I was 36. But maybe this makes sense of why I became a teacher. It wasn’t to teach other kids, it was to teach my own.

BLOOM:
What advice would you give other parents whose kids have sleep problems?

Bethan McCutcheon: My biggest advice would be to be honest with yourself and come up with a plan that works for you and your partner. Don’t compare yourself to what other people are doing or how I cope. For some families, it’s best for the child to take medication to lull them. Other families use specially-designed beds that are enclosed at the top, to keep their child safe. One dad adapted it and put a TV inside so the kid can watch DVDs when he gets up. When I showed a flyer about these beds to some friends and relatives, people gasped: “How could you put your child in a cage? That’s disgusting.” Wow. They just don’t get it. For parents coping with these issues, the enclosed bed is safety and peace of mind. Some parents try special diets or use heavy-duty shutters in the room or get respite so they can have a break. In addition to coming up with a plan that works for your family, I’d suggest connect with other families. That can give you a feeling of normalcy and help you cope. We’re on a google group for parents of children with Angelman in Ontario and we’re always sharing stories about what to do and what’s helpful. We laugh about how we have mental maps of every squeaky floor board in the house, and how to step around them.

The McCutcheons live in Haliburton County in Ontario. They attended an Angelman conference in Orlando last year where a playroom was made available 24 hours a day to accommodate children who were up during the night. The Canadian Angelman Society conference is being held in Montreal in July and includes a workshop on sleep disorders.

Tuesday, May 18, 2010

'I hope in me she sees something of herself'


I'm delighted to share a guest blog today from Ellen Dollar, a writer in West Hartford, Connecticut who has a bone disorder that she shares with her daughter Leah (pictured above). Does it make it easier, or harder, to parent a child who has the same disability you have? I thank Ellen for her thoughtful, moving response! Read more about Ellen's blogs and upcoming book at the bottom.

'I hope in me she sees something of herself'
By Ellen Dollar

“Shhh, I know. I know it hurts.”

How often we parents say that as we soothe our children after they’ve been wounded. We do it when they are lying tangled in their bed sheets with stomach cramps or on a hospital gurney awaiting the cast, the stitches, the pain meds. We do it when the injury is less obvious but no less great, when they are stung by rejection or hobbled by failure.

Like most of you who read BLOOM, I am the parent of a child with a disability. But unlike many of you, I have the same disability as my child does, a genetic bone disorder called osteogenesis imperfecta (OI), which causes fragile bones. My oldest daughter, Leah, 10, inherited OI, while my younger two children, Meg and Ben, did not.

When I say to Leah, “I know it hurts,” I really mean it. I know exactly what a fractured leg or arm feels like. I know the helpless panic that sets in when an X-ray tech says, “I have to move you a little bit to get the right angle.” I know the resigned dread of realizing that some long-anticipated plan—summer camp, a family vacation, a starring role in the school play—will fall victim to this capricious disorder.

This knowledge is actually a liability in the harrowing hours following a fracture. I have had many emergency-room conversations about Leah’s care while sitting with my head on my knees and an ice pack pressed to the back of my neck in a frantic effort to stave off the dizziness and nausea that threaten to transform me from competent mother to helpless patient. The memory of my own three dozen fractures abides, literally, in my bones, emerging as a consuming menace when I am confronted by Leah’s hoarse cries, the hospital’s antiseptic odor and harsh lights, and the crushing knowledge of how this fracture will bring hopes and plans clattering down in a great heap.

I’ve often heard parents say, “If I could bear the pain for my child, I would.” I have never said or even thought such a thing. I hate the pain. I just want it to go away and leave both of us alone. And so, when my daughter cries in her lowest moments that she would rather die than break another bone, I hear her. I know. The terrible part is that my knowing doesn’t make it any easier for her—at least not in those moments when nothing but pain exists or matters.

In less brutal moments, my experience with OI can make things easier. When Leah was diagnosed at six weeks old, we experienced none of that overwhelmed uncertainty that many new parents face when they are told their child has a disorder they’ve never heard of. I not only had 31 years of living with OI, but also served as the communications manager for the nonprofit OI Foundation until right before Leah’s birth. I had the latest information about promising drug treatments, new casting and surgical techniques, and physical therapy. We have very few horror stories about self-righteous doctors insisting they know better than us, or school personnel unwilling to accommodate Leah’s needs. I attribute this mostly to sheer good luck, but my years of experience have also made me a confident advocate. I have sought out professionals open to partnership and willing to concede that, often, we know more than they do. Of course, most parents of kids with disabilities become equally confident and informed. My personal and professional knowledge of OI just gave me a head start.

But day to day—when we are not dealing with a new fracture or meeting with professionals to chart our course—does my having the same disorder as my daughter make a difference? That’s a conversation I’d like to have with Leah when she’s older, because I’m sure her perspective is different than mine.

My sense is that our shared identity as people with OI significantly affects our family’s daily life, beyond some obvious limitations: I can’t help my four-year-old navigate the monkey bars, we don’t do family bike rides, and we’re not at all concerned with raising star athletes. In me, all three of my kids have an ever-present reminder that people with disabilities can live fulfilling, happy, successful lives. I hope that our abundant life with OI makes clear the folly of cultural obsessions with beauty, athleticism, and bodies that meet narrow standards of perfection. I hope that seeing me as a wife and mother will free Leah from agonizing doubts that anyone could ever love someone with a body that doesn’t live up to those standards. I lived with such doubts for years, and in many ways, that pain was harder to bear than the pain of broken bones.

Leah looks more like me than my other two kids. I look at her and see my long, double-jointed fingers (she and I enjoy showing off our disconcerting “finger tricks”); my flat feet and soft ankles; my skinny, slightly crooked limbs; my eyes with their bluish tint, which are a telltale sign of OI. I hope that, as she grows, Leah looks at me—at my spidery fingers and strangely colored eyes, my wobbly gait and odd angles—and sees something of herself. And I hope that in that recognition, she discovers a source of comfort and confidence.

Ellen Dollar writes about family and motherhood, faith, and living with a bone disorder which she shares with her oldest daughter. She is working on a book (to be published by Westminster John Knox in 2011) about the ethics and theology of assisted reproduction and genetic screening, drawing on her experience as someone with a genetic disorder who chose to have biological children with a significant chance of inheriting the disorder. Ellen blogs at Choices that Matter and The Five Dollars.

Monday, May 17, 2010

This and that

Happy Monday!

I have a few items of interest today.

Earlier this year, Michigan forced its schools to stop awarding diplomas to high-school students in special education. In the past, all graduating seniors, despite ability, received a diploma. Last month I received my son Ben's report card and it really bothered me that in addition to the report on how he's meeting his IEP goals, I received a form that lists the 18 required and 12 optional credits needed for a diploma, and in the earned-this-report and earned-to-date columns beside the list of courses, appear 32 big fat ZEROS (yes, even though there are 30 total credits, for some reason Ben ended up with 32 zeros). I haven't spent much time thinking this system through, but it doesn't seem right to me that students with special needs do not have their efforts recognized. And I don't appreciate having this brought to my attention every time he gets a report card. I'd rather they saved their ink. What happens in your neck of the woods? Are high-school students with special needs eligible for any type of diploma?

Studies have shown that challenging behaviour creates the greatest stress for parents of kids with special needs. Yesterday morning when Ben woke up at Bloorview he began picking at an open wound on his ear. For the last couple of years Ben has struggled with skin picking -- compulsively picking at scabs or bites and preventing them from healing. He has a scar under his nose as a result. We've tried many things to manage this -- though not a behavioural approach which I guess I should follow up on. A psychiatrist who saw him before his surgery felt he was in severe distress related to not being able to communicate fully, lack of friends, chronic pain, and seeing his siblings grow up and do things he can't. She felt his compulsive picking was a way to block out the difficult stuff and self-soothe. He's on Prozac, which doesn't seem to be helping, so we may increase his dose. He also, at his own request, wears gloves. He knows he's not supposed to pick but he just can't stop. It's hard to see your kid hurting himself and it's even harder when it happens when other people are around, I guess because we're socialized to follow norms in public. I felt a mix of sadness, shame and frustration when a nurse helped me get Ben into his chair and he just wouldn't stop picking, to the point there was blood on the sheets and his gloves (which, of course, he takes off to pick!). It makes sense that this behaviour would intensify given everything Ben's been through. It's just one of those hard things to cope with as a parent.

Now I see the moon, by Elaine Hall, out at the end of June, is a memoir about raising her son with severe autism. Elaine created The Miracle Project, through which she engaged children on the autistic spectrum to create and perform an original musical, which later became the subject of an award-winning HBO documentary. The title of the book comes from an ancient Chinese proverb: "My barn burned down, but now I can see the moon."

The case against perfection: Ethics in the age of genetic engineering. Harvard professor Michael Sandel says our quest to create the perfect child reflects our drive for mastery over life and endangers the view of human life as a gift.

This is a horrifying story about a Boston teenager with a developmental disability who was attacked by a mob of nine on a busy street in daylight. A neighbour said that at least seven cars passed by during the attack and no one stopped or honked.

Friday, May 14, 2010

He ate a donut



Ben has been at Bloorview a little over two weeks since his second surgery and he finally seems to have turned a corner.

He had an x-ray which showed the second hip hardware intact -- despite being taken out of the cast a number of times to clean his wound -- and his incision is almost healed.

He's still not eating normally. No meals. He'll occasionally take a cherry or a cracker. But today he bowled us over by eating an entire vanilla-dip donut. When I repositioned him in bed later his sheets were filled with coloured sprinkles.

He's bored and watching far too much TV. He's able to go to school for an hour or two each day, which is about how long he can stay in his reclining wheelchair. We were able to sit in Spiral Garden this afternoon and he promptly fell into a deep sleep (above).

The man in the photo is my amazing husband D'Arcy, who takes the night shift with Ben every night. I would never sleep a wink at the hospital and he knows it. So he does. I don't know what I'd do without him.

Thanks so much for your support and well wishes!

Thursday, May 13, 2010

Utah pandemic guidelines exclude some disabled children

Utah guidelines for who gets admitted to hospital or transferred to critical care during an influenza pandemic exclude children with chromosome disorders like Trisomy 13 and 18; spinal muscular atrophy; and progressive neuromuscular conditions such as muscular dystrophy "with inability to sit unaided or ambulate when such abilities would be developmentally appropriate based on age."

"Physician Norman Foster agrees it is reasonable to allocate scarce care based on a person's underlying cognitive abilities," according to this Salt Lake Tribune article, which includes comment from the mother of a 10-year old daughter with Trisomy 18.

The Utah guidelines evoke some of the same concerns raised in this recent BLOOM guest blog by Dr. Dick Sobsey.

Wednesday, May 12, 2010

Music By Prudence


The Oscar-winning documentary Music By Prudence premieres on HBO2 tonight at 8 p.m. ET in the U.S. It's played at several American film festivals and the DVD will be released later this summer (so we in Canada can see it too!).

Prudence, the hero of the film (front centre), is born with arthrogryposis, a condition that causes contractures of her joints and eventually results in her legs being amputated. Her paternal grandmother wants her dead, but her mother keeps her. Despite overwhelming odds, she ends up at a school for kids with physical disabilities and blooms there, starting an Afro-fusion band called Liyana with fellow students and musicians (above). She now teaches music at the school and choreographs dances from her wheelchair.

I'm disappointed I won't be able to view the film tonight, but hope some of our followers will tell us about it tomorrow!

Monday, May 10, 2010

'Burdens and blessings'


‘Burdens and blessings’
By Amy Julia Becker

“Penny’s tough.”

He said it because he wanted to support us. Peter and I were on vacation with close friends, and we had asked for parenting advice. That week, Penny just hadn’t been able to keep her “listening ears” on. She hadn’t “controlled her hands.” She wriggled and squirmed and ran away. She dumped milk on the counter. She refused to use the potty. She even pulled our friends’ daughter’s hair. So with the kids in bed, we were sitting at dinner bemoaning our lot as parents, wondering what we were doing wrong.

So when our friend said, “Penny’s tough,” he meant it as a consolation. He was encouraging us: We were doing our best. We shouldn’t be beating ourselves up. But I felt a little sick hearing those two words uttered from the mouth of the parent of three typically-developing children. I felt as though I had betrayed Penny, even as though I had betrayed kids with special needs in general.

Most of what I say to friends or write about, when it comes to Penny in particular and Down syndrome in general, is positive. Genuinely positive. When I hear that a baby has been born with Down syndrome, my gut reaction is, “Congratulations!” I want to get the word out that children with special needs really are special, as in, valuable, and deserving our attention and resources and care. That’s why we participate in a program through a local medical school and have doctors-in-training over for dinner. That’s why I write about the love and laughter in our family. I want to promote an ethic of inclusion. I want the rest of the world to know the goodness, the blessing, the joy, of welcoming children as they are given to us.

But all my positive stories and genuine joy in our child sometimes means I have a hard time talking about the hard stuff. I have a hard time admitting that life with a child with special needs can, indeed, be tough. That potty-training has taken two years and counting. That I wish I didn’t know the route to the Children’s Hospital of Philadelphia by heart. That there was a night last spring when Penny could have died of dehydration from a stomach bug. That I hear people making comments about where their children will go to school or who they will marry or even how many grandkids they will have, and I sometimes feel sad, not knowing what possibilities are out there for our daughter. If I talk about those thoughts and experiences and feelings, I’m afraid I will only perpetuate an impression that children with Down syndrome (and other disabilities) are burdens. Or that somehow, Penny’s existence is less than complete. That somehow, it is sad that she has Down syndrome. Or sad that she is our daughter.

I read a few years back that there's a difference between pity and compassion. When people take pity, it’s a distancing mechanism. It’s looking in from the outside and saying (whether by word or action): “I’m sorry for what you’re going through, and I’m so glad that I’m not you.” But compassion, a word whose root means “to suffer with,” is looking in from the outside and saying, “I’m sorry for what you’re going through. How can I enter into this hard place with you?” I don’t want people’s pity, and yet I wonder how often I have, in trying to avoid pity, instead closed myself off to compassion.

We had a medical school student over for dinner last week. He spent 30 minutes alone with Penny. I could hear her giggling and instructing him “Help me draw a playground!” and showing him how she wrote her name and reading books to him.

“How do you think it will impact William to have a sister with Down syndrome?” the student asked me, after she had gone to bed.

I talked for a while about the blessing I thought Penny’s life would be for him, how she would show him that character counts more than achievement, that value in life comes from who we are not what we do. The med student then asked, “Has it been harder having a child with special needs than a typically-developing child?”

I took the risk. “Well, yes and no. William cried for the first six months of his life, whereas Penny slept through the night at seven weeks. But with Penny, we did have therapy four times a week for about a year, and there are more doctors’ visits, and I do find myself worrying about whether she will have friends when she gets older.” As soon as I said it, I wondered, again, if I had betrayed her.

But he responded, “You know, I look around your house, and having spent time with your kids, I think this is a life I could aspire to. And I mean all of it, including having a child with a disability. Somehow it seems to make your life even better.”

He’s right. Somehow the hard stuff and the joy are related to each other, and together they are leading us more and more into a life of gratitude. Talking with honesty about it all doesn’t betray Penny, any more than it betrays colicky babies to talk about William’s first few months of life. And although I think parents of children with special needs do experience struggles of a more intense nature than most parents of typically-developing kids, all parents need a safe place to admit the stuff that’s been hard lately. So I’m going to try to create that space, to talk about the burdens and the blessings of our life. To trust in the compassion of our friends and family. To trust that what’s 'hard' is part of life, and a part of love.
Amy Julia Becker, mom to Penny and William (above) is a writer and a student at Princeton Theological Seminary in New Jersey. At Thin Places she blogs about "theology, disability, children and parenting, education, and the intersection of grief and hope."

Friday, May 7, 2010

Free as a Bird


Today we have a book review by Cindy Matthews, a vice principal and writer in Waterloo, Ont. who has lots of experience working with children with special needs. She brought this new book—Free as a Bird—to my attention. The book is fiction, but the author has a sister with Down syndrome. I can't wait to read it. Thanks Cindy!

Free as a Bird, Gina McMurchy-Barber, Dundurn Press, Toronto, 2010. 168 pages.
Reviewed by Cindy Matthews


My name’s Ruby Jean Sharp an I growed up in Woodlands School. That wasn’t a nice place for a liddle kid—nope, not a nice place a’tall.

So begins the fictional story of Ruby Jean’s life in an institution, Woodlands School, based in western Canada.

Ruby Jean has Down syndrome. She grows up in a time when people with developmental challenges grew up behind locked doors and windows with bars. Life lacks stimulation. Imagine her life: Staff is your caregiver. You keep wishing your mom would come back and take you home. You grow up losing skills you once had because you’re depressed, desperate and despondent.

Ruby Jean’s distinctive voice clutches you. British Columbian author Gina McMurchy-Barber does a stellar job of injecting Ruby Jean into your soul. How? Through McMurchy-Barber’s excellent character development, Ruby Jean is depicted as a change agent. She forces you to reexamine your attitudes, your prejudices, and your behaviour toward people different from you.

For example, Ruby Jean says, Sometimes bein a fly on the wall’s not such a good thing. That’s cause sometimes I heard things I wished I dint hear. Like the night Morris told some other uniforms bout Paulina.

(Morris says,) “Can you believe it—they dug out her brain and sent it to medical school. Don’t ask me why? I mean, what could they possible learn from the brain of a halfwit?” Then he laughed.

McMurchy-Barber captures in such a respectful way this young girl’s mental, emotional, social and behavioural decay. The uniforms clutch the keys. Staff ‘leashes’ her to maintain control and to diminish her hope. Dominance reigns supreme over the ‘retards.’ One staff says, “It’s business as usual – wake ’em, hose ’em, feed ’em, park ’em…”

A life fraught with grief, boredom, isolation and abuse, Ruby Jean often finds herself in a highly anxious state and with good reason. For instance, part way through the story Ruby Jean lives with a foster family. One night she finds she has had an accident in bed after drinking too much hot chocolate. Afraid she’ll get in trouble, she stuffs the soiled sheets in her closet. After being physically and psychologically tortured by the ‘uniforms’ in the Woodlands Institution, she is filled with dread. (She) could still hear the uniforms in my head though—yup, couldn’t get them to stop callin me names.

When Ruby Jean finds herself on the streets in the east side of Vancouver, life could not throw any more curves at her. Barely equipped for life in assistive living never mind life on the streets, Ruby Jean is the poster-child for vulnerability. McMurchy-Barber does an excellent job of painting life of the marginalized in this part of the story and reveals how Ruby Jean and her homeless friend find ways to be ‘free.’ Through email dialogue with this reviewer, McMurchy-Barber says she wanted to show that for Ruby Jean life on the streets “was better than going back to the hell that she knew as Woodlands.”

In the author’s notes included at the end of the book, McMurchy-Barber states, “When I was a kid, there was one word that grated on my nerves like fingernails on a chalkboard: retard.” Without lecturing and through excellent use of narrative, this author renders the reader to be Ruby Jean. And through this exquisite experience, empathy and understanding flourish.

McMurchy-Barber uses some of her experiences with her sister with Down syndrome to assist her in finding voice for this must-tell story.

Who should read this book: Everyone! Why? It’s an honest portrayal of what should never happen to a human being. It provides much needed enrichment reading for all of us, young and old. Run, don’t walk, to find a copy of this honest, movingly written novel.

Cindy is a vice-principal of Section 23 (care, custody, treatment and corrections) programs in Waterloo Region in Ontario as well as an enrichment centre for children in grades 1-8. Her daughter is entering fourth-year university and has attention deficit disorder. Cindy also teaches online special-education courses for Queen’s University in Kingston. Before becoming an administrator, Cindy assisted students with autism spectrum disorder diagnoses to be integrated into classrooms in elementary and secondary schools in Waterloo Region. You can read more of Cindy’s work at www.cindymatthews.ca.

Wednesday, May 5, 2010

When negative attitudes compromise care

Today we have a guest blog from Dr. Dick Sobsey, a professor of educational psychology at the University of Alberta, where he’s also associate director of the JP Das Developmental Disabilities Centre and director of the John Dossetor Health Ethics Centre. Dick’s son Dave, 19, has multiple disabilities. Dick’s research looks at violence against people with disability; ethical issues related to disability; families of children with disabilities; and inclusion. He’s a keynote speaker at a workshop later this month called Life and Death Matters: The Immediate Threat to People who have a Disability and the Need for Action. It’s part of Community Living Ontario’s annual conference.

The workshop addresses how children and adults with disabilities may be devalued in the health-care system, and how negative attitudes about disability can be life-threatening if they compromise care.


This is a sobering piece and one that reminds us that outside the doors of rehab hospitals like Bloorview, attitudes about disability are often based on stereotypes and ignorance. Thank you for sharing this with us Dick!

You may be interested in this excellent related article from The Lancet journal last year:
Disability and the training of health professionals. Louise

When negative attitudes compromise care
By Dr. Dick Sobsey

Can you imagine living in a country where some children and adults are denied essential health care simply because they have disabilities?

What would it be like to find out that your baby’s death resulted from a lethal dose of narcotics?

How would you feel if doctors asked if you wanted to withhold lifesaving treatment from your daughter and you said “no,” but they withheld it anyway?

Imagine being told that because your son is now an adult, he’s no longer eligible for the dialysis that was provided through pediatric services a few weeks earlier?

What would you do if you were told that your daughter with severe pneumonia would be made comfortable while she died because someone without a disability might later need the respirator she requires?

All but the last of these things have happened in Canada, despite the Canadian Charter of Rights and Freedoms, The Convention on the Rights of the Child, and the Convention on the Rights of Persons with Disabilities, which agree that children with developmental or physical disabilities are entitled to the same health care as all citizens. The last scenario is part of a triage protocol for critical care during an influenza pandemic published in the Canadian Medical Association Journal in 2009, and adopted by many Canadian hospitals. It indicates that patients “who may benefit from admission to critical care” will be denied it if they have severe cognitive impairment, advanced neuromuscular disease like muscular dystrophy, or quadriplegia.

On Friday, May 28, 2010, Community Living Ontario will present Life and Death Matters, a full-day program to discuss these issues, their root causes, and what can be done to change the situation.

There are many excellent and dedicated health-care professionals out there who make every effort to provide the best possible health care to ALL Canadians, including those with disabilities. Some have recognized the problems faced by people with disabilities and their families and worked to make improvements. For example, in 2006, Consensus guidelines for primary health care of adults with developmental disabilities were published. These state:

“…adults with developmental disabilities (DD) require more attention from health-care providers and have a greater need for health care resources than adults in the general population. Without adequate primary care, the health issues of people with DD often go unrecognized. Even when identified, these issues are often inadequately or inappropriately addressed. Such disparities between adults with DD and the general population substantially increase risk for preventable illnesses and premature death among the former.”

Canada is not alone in this. In 2002, the Surgeon General of the United States published Closing the Gap which reported:

“Americans with (intellectual disabilities), and their families, face enormous obstacles in seeking the kind of basic health care that many of us take for granted. Unfortunately, societal misunderstanding of (intellectual disabilities), even by many health-care providers, contributes to the terrible burden.”

In 2007, the United Kingdom’s Mencap published Death by Indifference, detailing cases of people with developmental disabilities who died because they could not access quality health care services. In describing one of these cases, it reports:

“We believe that the real, underlying cause of Mark’s death – and those of many other people with (an intellectual disability) who die in hospital – is the widespread ignorance and indifference throughout our healthcare services towards people with (an intellectual disability), and their families and carers. We say that this is a national disgrace. We say this is institutional discrimination.”

In spite of these efforts to identify and respond to the problem, little actual progress has been made. Most health care providers and members of the general public simply don’t care enough about these problems to make it a priority.

This quote from a grieving British mother sums up the attitude of too many health-care providers: “When my 9-year-old daughter Daisy died, a doctor at the hospital said to me: ‘It's almost like losing a child.’ What did he think my beautiful daughter was?”

Join us on Friday May 28 to discuss these issues with a host of North American experts.

Register here.

Sunday, May 2, 2010

I am one of you



I am one of you
By Louise Kinross


I used to pass them on my way in, taking a quick smoke. I’d see them around the building wearing track pants and jeans, wet hair air-drying. Sometimes there was exhaustion and desperation in their eyes. Other times elation: their child had lived through a catastrophic accident or illness or a miracle had occurred – a tiny movement in a limb, a word.

I got to know some of these parents and I marvelled at their endurance as they camped out at the hospital over weeks, months, sometimes a year or more.

On Friday my son Ben was transferred to Bloorview as an inpatient while he recovers from hip and knee surgery. His situation is small potatoes compared to what many families are coping with.

Yet I was surprised at how vulnerable I felt now that I was one of those parents that I'd watched for so many years. I felt like a fish out of water in the lounge where the families eat meals and store and prepare food. Another mom smiled and showed me where to get things – the straw dispenser, the juices, which side of the fridge families store food on. It was our first day and this mom said she’d been living here with her son for 10 weeks. Ten weeks!

Colleagues who would now be my son’s therapists or nurses came to visit. A woman compassionately cleaned my son’s wound. I’d seen her in the halls before but I’d never known what she did. Another nurse freshened him up with a sponge bath; he's in a body cast that causes him to sweat profusely. When the night nurse arrived I recognized her name from a former client’s recent tribute, so I knew he was in good hands. Yesterday we were able to drop in on the end of a weekend arts program. The child life specialist brought Ben a bag of gifts and recreation therapists came by to see if he wanted to hang out with others.

Ben's still exhausted and taking naps. He hasn't eaten anything since his surgery. He won't touch a McDonald’s french fry or his favourite old-fashioned Starbucks donut, or any of the numerous foods we’ve brought to entice him. I bribed him to eat half a cherry tomato by telling him I'd buy him a new Star Wars character.

We had a scare last night when his wound began oozing a lot and the nurses didn't have all the information from SickKids about the type of dressing used.

I e-mailed our stellar surgeon (it was Saturday night and he was away at a conference) and he messaged me right back, reassuring me that the oozing was to be expected and that the nurses could pack it with any kind of gauze. I told him he deserved a gold star.

Days can move slowly when your child is hospitalized, especially on the weekend. Our room looks out onto the main doors and parking lot. It’s reassuring to see people come and go and watch the everyday goings-on in the surrounding neighbourhood. I'm grateful for the massive windows that flood the place with light and connect us to the outdoors.

Today Ben and I went for a walk in Spiral Garden, the ravine at the back of the hospital that’s transformed into a magical artist-run camp every summer. There were art projects – strings with shells and sticks and beads – draped in the trees. We hit a row of hanging pipes that make music and I picked a dandelion for Ben. We came upon some materials blowing on a chair in the breeze and Ben picked a sparkly turquoise piece with stars (see above).

It was great to feel the sun on our skin and sit in the cool shade.

Tonight I found myself padding down the third floor hall to the lounge in my socks and track pants. Slowly, I'm getting used to this place.