Monday, April 30, 2012

Blessing













As parents of children with disabilities, we don't take anything for granted.

So when my son came shopping with me at a massive grocery superstore yesterday and navigated all the aisles on foot, I couldn't help feeling giddy and grateful.

It's easy to move on to the next worry or fear or regret, but sometimes we need to fly our flags in celebration (in this case, Tibetan prayer flags).

Friday, April 27, 2012

With a little help from my robot
















The first randomized trial into the effectiveness of robotics in improving walking in children with cerebral palsy was launched at Holland Bloorview yesterday. The $500,000 clinical trial is funded by CIBC. The $400,000 robotic device was donated by Three to Be, a foundation led by Dana and Jared Florence, who have triplets with cerebral palsy. Wesley Magee-Saxton, 12, demonstrates in this Global report.

Thursday, April 26, 2012

I like Wonder Baby

I don't usually write about contests, but when I went to the site promoting this iPad giveaway, I was impressed. Wonder Baby is a resource for parents of children with vision impairment and multiple disabilities -- written by a mom -- and funded by the Perkins School for the Blind. The site has articles, resources, a Q and A section, a blog and toy recommendations. There are lots of ways for parents to share advice. Great resources, and you could win an iPad!

Wednesday, April 25, 2012

'My brother knew what to do'

























By Meriah Nichols

I went through the windshield of a car when I was four years old, back in the day when seatbelts were charming accessories. The glass shredded my face, the head-on collision gifted me with brain injury coupled with a quirky auditory processing disorder. My deafness came later. 

Events of great magnitude seem to have a way of silencing the world and oneself. The accident silenced four-year-old me, made me still inside. I remember the change and I recall my world shifting, the confusion that I felt, the isolating pain of experiencing the shift within others. The world, you see, doesn’t quite know what to do with little girls with blood-red scars all over their sweet little freckled faces, with their strawberry-blonde hair shorn off their heads. It felt as if the world took one look at me and turned away, embarrassed, muttering something about my “pretty eyes.”

But my brother knew what to do. He knew me. He had always known me. 

Only 15 months apart, he felt closer to me sometimes than my life-breath. He knew the person that I was before the accident, the person that I still was after the accident, and didn’t see much in the way of a difference. He wanted – demanded even – that I play with him, that I be his buddy, ever-ready to hop in a puddle of messy mud on our rural sheep ranch. Roll down the mountainside in wild games of tag, twirling, round and round, the old oak trees soaring overhead.


Through the years, where we lived changed, but not much did within our relationship. Instead of roaming wild on our farm, we were combing the coral reef in front of our house in Levuka, then bicycling with wicked speed down the streets of Suva, Fiji. My vision, always incredibly poor, ceased to be so much of an issue as my coke-bottle glasses were put aside each day in favour of contact lenses. This, right at the same time as my hearing was getting noticeably worse. He’d tell me what people were saying, my automatic translator of sorts. I’d simply look at him with a question in my eyes and he would tell me what was going on. It wasn't a big deal but it happened a lot. In the meantime, I showed him what I thought to be the “cool” dance moves. We practiced together in his room with our ancient, giant FM radio. We had our separate groups of friends – sometimes we ended up all playing together and sometimes we didn’t and it wasn’t a big deal. It was just about having fun. 

He made me feel better when I was sure no boys would ever like me. He brushed off my occasional tears when people teased me or when I realized that I was more like Dawn Weiner from the movie Welcome to the Dollhouse than I was Veronica from the Heathers

Without reservation, I loved my brother more than anything in the world. 

Many decisions in my life were made from that love. My decision to go and live in Taiwan to help him out (or, as I later joked, provide him with slave labour – my brother is a notorious workaholic). Twice. Or was it three times? I can’t remember. 

My decision to major in elementary education in undergrad – he did too, and at the same time. We’d stack up credits, divvy up classes, splitting focus (I paid more attention to the ones I was “responsible” for; we’d compare notes and hold tutoring cram sessions with one another on our respective areas), which got us both out of university, our bachelors' degrees in hand, in about two years. It was hard. It was great. We worked well together.

My decision to have more than one child was without question from my relationship with my brother. I couldn’t imagine not giving my child, my beloved little Sprout, a sibling to love and grow up with. 

I just didn’t picture that the sibling I would gift my son with would, like me, have a disability. I didn’t think that my son would be in the same position as my brother – an older sibling of one who had needs that were less common than most. 

It spun me around. 

Was I wrong in thinking that my brother and I were such a team? Was I imagining everything, casting a lovely golden glow on everything simply because they were memories? Was growing up with me really horribly hard for him? Was early life some unmitigated series of various burdens for him?

We’ve never really talked about it, you see. We do not talk about things like that. We're from that Swedish farming stock, you understand. 

So I asked him. In an email. This is what he said:

I really find the question funny! Growing up I never looked at you as deaf or scarred. You were my sister. We fought about everything but that just brought us closer in later years.  

When we were young you had a hard time understanding other people and in many cases even Mom and Dad which made you naturally look at me and I would say the same thing again and you would get it. You naturally taught me to speak slower than most people and clearly.  

Growing up I really never thought about it as a chore or looked at you as disabled in fact I thought you were tough and courageous. I remember teaching you how to fight and then you decked that big Fijian girl who was teasing you. You really didn't let anyone push you around! 

When we were young maybe because we moved quite a bit we weren't able to develop a lot of friendships with others so it was basically you and me 
 partners in crime. 

I have so much to thank you for  your "disability" taught me so much growing up  to be more patient, understanding, and protective… you are and always will be my little sister. 

It's nice to know there really was a glow, we really were our own Dynamic Duo.

And it warms the cockles of my heart that I wasn't wrong after all: my brother loves me just as much as I do him.

Meriah Nichols blogs at With a little moxie, where she describes herself as "the happy bon-bon eating soap-watching SAHM of two. I write about travel, disability and lively living. My daughter has Down syndrome and likes to eat paper. I am deaf and take too many photos. My son loves large earth-moving pieces of machinery. My husband is easy on my eyes...and my soul.


Monday, April 23, 2012

The Capability Approach

Donna Thomson, author of The Four Walls of My Freedom, speaks about how she adapted Nobel prize-winning economist Amartya Sen's Capability Approach to explore how people can create a life they value in any situation of adversity, including severe disability. Donna was part of our BLOOM speaker series and she wowed our audience. Thanks Donna! Louise

Thursday, April 19, 2012

Links













Wonder
"I won't describe what I look like. Whatever you're thinking, it's probably worse."
A fifth-grader who's always been home-schooled because of severe facial differences enters middle school. For ages 8-12. Read the NY Times review.

Love me for who I am
Songs for differently-abled children and their families

Loving Lampposts trailer

For high-school athlete with Down syndrome, age is an issue

The need to believe in the ability of disability

Networking patients to combat chronic diseases

Local autistic child struck, handcuffed by police

David Cameron: The five things I've learned as father of a disabled child

Aspergers Are Us comedy troupe plays off their disability

The Thinking Person's Guide to Autism

Wednesday, April 18, 2012

A magic bullet or a better life?














I read this article in Nature yesterday: Gene hunt is on for mental disability.

The story describes the search for unidentified gene mutations that may cause unexplained forms of intellectual disability.

This scientific ‘hunt' around the world is made to sound very exciting, but the reasons for undertaking it — the potential benefits and outcomes for real people that justify the enormous investment — are a bit murky.

The article notes that in most cases identifying the mutations won't translate into treatment or cures.

However, a scientist quoted says a specific genetic diagnosis is important to parents who haven’t known the ‘why’ of their child’s intellectual disability for years.

For those of you who have a child with intellectual disability — or physical disability for that matter — is that true? How does knowing that my child’s disability results from a mutation in gene x or gene y enable me to improve the life of my child in the here and now? How does parroting an exotic-sounding mutation or rearrangement change one iota the quality of my child’s life — or of the public’s understanding and acceptance of him?

When Ben was three days old, our pediatrician told us that knowing the genetic basis of a particular syndrome, when rare, didn’t often offer up any practical knowledge about interventions that could benefit the child or family. Not enough people had these syndromes to entice drug and other companies to research related treatments.

In our case, having a diagnosis for Ben's rare genetic condition did help me find other families on international genetic bulletin boards who had valuable practical information to share. But I don't think that's what these scientists are after.

Knowing the genetic 'why' didn't help me feel better or help me better support my child — in and of itself.

The Nature article refers to intellectual disability as a disease, but I don’t see it that way. I see it as a different way of experiencing life that is marginalized by mainstream society — in the same way that being gay, being a woman, being black, or being old have been stigmatized.

My son’s intellectual disability does not make him ill. It makes it harder for him to learn in conventional ways. I would never romanticize it, but I would not say it is without advantages. For example, my son is not capable of the deception of ‘image’ that blocks most people with average or Einstein intelligence from truly knowing each other.

Earlier this month I read a fascinating article about Autism Awareness Day in Neurotribes, a blog by investigative and science reporter Steve Silberman.

Silberman questions how dollars are allocated in autism research, noting most go into the ‘hunt’ for a genetic or environmental cause and cure — not to improving the lives of millions of adults living with autism.

"No matter where you stand on the rising numbers, there is one undeniably shocking thing about them," Silberman writes. "Once that 1-in-88 kid grows to adulthood, our society offers little to enable him or her to live a healthy, secure, independent, and productive life in their own community. When kids on the spectrum graduate from high school, they and their families are often cut adrift — left to fend for themselves in the face of dwindling social services and even less than the meager level of accommodations available to those with other disabilities.

Meanwhile, the lion’s share of the money raised by star-studded “awareness” campaigns goes into researching potential genetic and environmental risk factors — not to improving the quality of life for the millions of autistic adults who are already here, struggling to get by. At the extreme end of the risks they face daily is bullying, abuse, and violence, even in their own homes.

…What could be done to make the world a more comfortable, respectful, and nurturing place for millions of autistic kids and adults – now, starting today?”

I think that should be the starting point for investment in research for all types of disability, including intellectual disability: How will this research benefit the lives of people living with these conditions today? Unfortunately, improving the lives of people who are devalued in our culture is a much messier and complicated undertaking than a tracking a gene change in a lab.

Yes, we have to look to the future. But there needs to be a balance between research that has the potential to benefit people decades from now —  and when we're talking rare disorders, it's hard to imagine there being a market to drive that kind of research, ever —  and research that makes a difference to people today.

Monday, April 16, 2012

Flippity flop














This is a piece I wrote four years ago about Ben's unusual ears and the plastic surgery to correct them that wasn't successful. I was reminded of it because last week I attended a Grand Rounds by Jennifer Johannesen, author of No Ordinary Boy, in which she spoke about how challenging it is for parents of children with disabilities to make good medical decisions. That statistics, the assurances of specialists -- which in our case often came in the form of "If this was my child, I would pursue it" -- can't take the place of careful inner enquiry on the part of parents to understand 'why' they're considering the intervention. Who is the surgery being done for? What might the child choose? If gains will just be incremental, does it justify the pain of the procedure and rehab? We're often not prodded to look at the bigger picture in terms of how this surgery fits with everything else going on in our child's and family's life. And how may we feel if the outcome isn't what we hoped?

Flippity flop
By Louise Kinross

"The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart." Helen Keller

It stands out from his head. It is cupped, missing the typical indentations and folds, with a bit of extra skin at the top. It has been called a deformity, a lop ear – named after the distinctly floppy ears of the lop rabbit. It is my son Ben's right ear, and it was one of a handful of facial anomalies that caught the attention of the midwife who delivered him.

That impossible-to-ignore ear, which vigorously resisted surgical attempts to tuck it back at the head, represents my own struggle as a mother of a child who looks different.

My child stands out. My child doesn't fit in. My child, by some, is considered deformed and ugly.

Ears. I had never given them a passing glance. Who did?

But this particular ear has led me to think long and hard about beauty. What is it? Is it an objective standard? Is it a certain facial symmetry, as suggested by evolutionary theory, which helps us identify people with good genes and exclude others? Can it be altered by the perceptions of the one viewing, or by the personality or spirit of the one being viewed? Is it subjective and fluid, based on characteristics that bring delight to a particular individual? How is it possible for us to see beauty in people deemed ugly by others? Why can our perception of beauty in a person change over time? How do people who are blind detect beauty in others?

Fourteen years ago, as I bubbled with glee at the birth of my first child, I had never had to consider these things. I saw a blurry little body with a mohawk-like tuft of wet hair being whisked away to be suctioned and waited for them to bring him to me.

But before I could hold him for the first time, the midwife returned and put her hand on my arm. "He has some unusual features," she said.

When he was finally passed to me, wrapped up in a blanket with a little stocking on his head, he did look different: his face was swollen, his nose a bit squashed, his chin was retracted and his ears stood out, one smaller than the other and fully cupped. His lips were almost non-existent.

I was concerned, but I wasn't panicked. My body was tingling with joy, endorphins coursing through it like the wind shaking the leaves of a poplar tree.

The hospital pediatrician arrived, unswaddled Ben and looked at him disapprovingly. "He has anti-mongoloid eyes, low-set ears and a bit of a hare lip," he said. He was obviously annoyed at being called out at that time of night and he didn't like what he saw. He said our son had "something like a cleft palate" and muttered under his breath: "the timing wasn't right."

An earlier amniocentesis on Ben had come back normal, so it was a surprise when the doctor said Ben had a constellation of symptoms that looked like a chromosome problem. At exactly one-hour-old, the doctor said these were soft signs for mental retardation, though he didn't know what he was dealing with.

We returned home with Ben in a haze of shock and a black hole of fear.

What did Ben's appearance mean? Would he be mentally retarded as the doctor intimated? How would others react to him? What would we tell them? How do I control what others think (in the early days I naively thought I could)?

"Couldn't we still be a happy family?" I asked my husband on day three.

On day four we saw a geneticist. She said Ben had a greater than 50 per cent chance of having a rare genetic condition associated with "abnormal facies."

But I had already started to see him differently. Outside of the clinical setting and scrutiny, my boy was growing beautiful before my very eyes. Here's how I described it:

2 weeks and a day
You have very delicate features – beautiful blue eyes with extravagantly long lashes, well-defined and delicate eyebrows, a round face with plump cheeks and tiny little lips. You have very light, fair skin.


3 months
You are becoming more beautiful every day. Your eyes are drop-dead gorgeous – big big, blue, long, long lashes.


5 months
Your face has changed a lot. Your eyebrows are growing in just like your Dad's – very thick. You have the most gorgeous smile – an all-out, ear-to-ear grin with dimples. You are very masculine-looking. Your body is a miniature of your Dad's.


6 months
It seems like a miracle that you are here. I like to sit and wonder at you – where you came from, how you came to us, how you are so perfectly formed.

How was it possible that I could view Ben as "perfectly formed" when medical experts described his face as "a complex picture with multiple congenital anomalies?"

I have come to the conclusion that beauty is something we choose to see.

When I was immersed in the everyday tasks of loving and caring for Ben, he was so much more than his unusual features: he was a cuddly ball of heart, giggles, interests and charms, whose chest rose and fell at precisely twice the rate of mine.

When I gazed into Ben's eyes it was like looking into a complete world. Ben mirrored back my joy and acceptance. In each others eyes, we were whole. In each other's eyes, we were enough.

And so it was that I could be emotionally broadsided when, instead of delighting in my sweet prince of a boy, others placed his so-called defects front and centre.

When Ben was almost a year he was diagnosed with torticollis; the muscles had developed too strongly on one side of his neck, causing him to sit with his head in a perpetual tilt. As we introduced ourselves to the therapist assessing him, I explained that Ben had a rare genetic condition. "I can SEE that," she chortled.

Ten days later, as Ben lay on an examining table charming a handful of medical students, the surgeon who was to bring down his testicles pranced into the room and demanded angrily: "What is WRONG with his head?"

Medical records show that emergency staff often noted Ben's facial appearance before his pressing medical problems. When he arrived by ambulance with bronchiolitis he was the "settled baby with unusual facies." A trip back to emergency with breathing problems two weeks later yielded this description: "Very unusual-looking baby who is active and happy."

Specialists who were consulted on other parts of Ben's body couldn’t seem to resist documenting that he had "dysmorphic" – malformed, misshapen or underdeveloped – features. I remember the first time I raced to the dictionary to look the word up, heart thumping at this new and horrible name that had been ascribed to my son. My sister-in-law, a physician, explained that doctors had a code name for kids like Ben: FLK or "funny-looking kid."

When we wrote my uncle about Ben's syndrome he wrote back: "We could see in the photo that something wasn't right."

The genetics counsellor assured me that I had every chance of having a "perfect" baby next time.

The implication that my son was imperfect, flawed, deformed could send me reeling with rage and grief for days.

After opening my uncle's letter, I phoned my friend Candace. I asked her a question I had not dared verbalize – except to my husband – for over a year: "Does Ben look different to you?" I didn't want an honest answer, but this time she gave it to me: "He doesn't look different to me because I'm used to him, but he probably looks different to other people."

I hung up the phone in a fit of sobs. I had floated on the illusion that Ben's differences were subtle and perhaps not noticeable to others. But more than that, I had simply stopped seeing them.

Our pediatrician had always been exuberantly positive about Ben – thank goodness. He even made comments about how Ben's facial features had normalized since he saw him at a few days old. Many friends, trying to be diplomatic and supportive, said they didn't notice anything. Of course I slurped those comments in like a draught of cold beer on a hot day and they reinforced my way of seeing Ben.

In my eyes his differences dissolved because I saw his face and being as a whole. But in others' eyes the odd features superseded the boy. In their eyes he was different, an oddity, something "wrong."

Now when I was out in the world, I would suddenly see this boy with the syndrome, the boy whose every feature had been scrutinized and found lacking. It was like I'd been fitted with a new pair of glasses: instead of bringing into focus his merry, dimpled-grin and piercingly beautiful eyes, all I could see were the stark clinical anomalies described in the medical texts: large bulbous nose; downslanted eyes, long philtrum, receeding chin, thin lips, sparse hair, outstanding ears. This new child was a stranger to me.

I began to fixate on the symmetry of normal faces – a certain space between the eyes, and between the nose and the mouth. Ears that were mirrors of each other, tucked tight against the head and identically placed under the short, little-boy hair cut that was so popular at the time.

Sometimes I would catch myself looking at other children's features and just longing for the same for Ben. "I hate these feelings," I wrote. "It isn't so much that I want this for Ben (that I can't accept him for how he is) but my fears that without a normal or conventional appearance others will not accept him and love him." Sometimes I felt bitter. Sometimes I would take photos of Ben's face and hold them upside down to examine the defects more objectively.

Strangers at the park attributed Ben's facial features and decreased facial movement to a negative mood. "Is he mad?" they would say, looking into the wagon at my passenger. "Is he always like that?"

"No, he's not mad!"

One day, while Ben played at the sandbox, a toddler came, stood in front of him and began to chant: "monkey man, monkey man."

"He wasn't being mean, just factual," I wrote. "I was not in one of those educational moods, and didn't say anything. The child seemed too young to understand an explanation and I didn't feel like saying: 'Yes, Ben's ears do look like a monkey's.' Doesn't this become comical or sad after a while?"

I didn't have experience with people who looked different growing up, yet as a child the question of how appearance could predict a life of happiness or sorrow puzzled me. "What would you do if you fell in love with Frankenstein?" I asked my best friend, Cathy. "I wouldn't fall in love with Frankenstein," Cathy said as she bounced back from a handstand on the street curb.

"But what if you DID?"

I can recall a moment of disturbing recognition when I looked at some photos I had taken of Ben as a newborn, but a couple of years later. I could now see the differences in a way I had not been able to at the time.

Something similar happened when I sat behind Ben at the hairdresser. The mirrors didn't correct his differences like my eyes did – they left them naked and punctuated.

While I would gladly have traded places with Ben for the 15 surgeries he endured (his ear surgery the only cosmetic one), I didn't know if I would have the courage to be so strikingly different in a world that places such value on appearance and conformity.

Over time, we learned that some of the features we had loved as Ben's – such as his extraordinarily long eyelashes and bushy eyebrows – were part of the syndrome.

I had read about parents of children with Down syndrome who had their slightly upturned eyes "corrected" with plastic surgery. This felt like a horribly intrusive and wrong intervention. Why put the child under the knife in order to fit arbitrary social norms? But I could understand why a parent would be led down that path. Down syndrome is so common that the facial features associated with it are an immediate marker of stigma.

One of Ben's first caregivers – a young Polish woman – was horrified when I said we'd considered getting Ben's ears pinned back when he was older. "His ears let people know there's something different," Margaret said.

"That's exactly what's so painful and unjust," I said. "No one wants their child judged in a split second based on appearance."

Ben's ears had always been most remarkable and since he was born we'd been told there was a simple operation called an otoplasty to pin them back.

We visited a plastic surgeon at a renowned children's hospital to find out more.

Dr. S was a young man with Hollywood looks followed by a small entourage of plastic-surgery students. He was kind and friendly and took his time looking intently at Ben's face.

Naively, I expected him to see what I saw. How could Dr. S see anything I hadn't already seen in my boy, who was now 3?

But he did.

"Ben could benefit from a bit of cartilage to create a tip at the end of his nose, which is somewhat flat," he said. "This can easily be done when he has the ear surgery." I had not seen the flatness of his nose – except in the minutes following his birth, when he had the typical squashed newborn look.

Pinning back his ears was one thing, but I couldn't fathom allowing a surgeon to cut into my son's face.

The volume of his cheeks is asymmetrical, Dr. S continued. I couldn't see the unequal shape of his cheeks so Dr. S tried to point it out to me. Was I insane? Why was I not able to see these things?

In addition, my boy's face wasn't as animated as usual due to low muscle tone – his smile not as broad as normal. I had always thought of his smile as one of his most beautiful attributes.

I couldn't reconcile the beauty I saw in Ben – and the delight he brought me – with his medical picture.

We left the appointment with a referral to Dr. W, the surgeon who did ear work.

I struggled with whether we should pursue the otoplasty. I hated that my son would undergo surgery in large part to make other people feel more comfortable. But by this time, Ben had been diagnosed with a whole collection of physical and learning disabilities related to his syndrome. When I asked Ben, who was unable to speak, if the kids ever teased him about his ears, he hit "yes" on his voice-output device. And when I asked if he thought it was a good idea to have the operation to fix his ears, he again hit "yes." Dr. S said they liked to do facial surgeries before the kids entered kindergarten – to "max out" their appearance and minimize social exclusion and teasing. In addition, there was now a strong functional impetus: Ben needed hearing aids and because his ears flopped forward, the behind-the-ear aids constantly waved back and forth, creating a disturbing ringing in his ears.

I was desperate to even the playing field for my boy and remove even one of the many strikes against him.

Other than telling us that Ben was a good candidate for the ear reconstruction, Dr. W didn't tell us what to expect. I don't know why I didn't ask. My understanding of plastic surgery was limited to episodes of Extreme Makeover. I assumed Ben's ears would be made symmetrical, tucked back at his head and equivalent in height. Like other people's ears, I assumed they would look "the same."

Ben emerged from the operation with his new ears bound in layers of white bandages. Dr. W said the procedure had gone well and we were elated. My only concern was the hot, itchy bandages, which Ben was supposed to wear for a couple of weeks.

Ben was highly sensitive to touch, so to deter him from ripping off the head dressing, I purchased some Teletubby hats that came down over his ears and snapped at the chin.

This lasted for about a week. One day I left Ben watching a video and when I came back a few minutes later bandages were flying through the air. My curiosity got the better of me and I allowed him to unwrap the last couple of rounds.

I was crushed. While his ears sat back closer to his head, they were still asymmetrical and very different in size and appearance.

I squinted and reopened my eyes a couple of times. Was I not seeing properly?

I expected two ears that looked the same – the birthright of most children. What had we done? I wondered. Why had we put him through this?

We went back to the hospital a month later and a nurse took out the stitches. A medical student came in, took one look at Ben and said: "I guess you're here about surgery to correct his ears?" I don't remember what Dr. W said. It was obvious that the student had given us an unsanitized assessment.

In the ensuing months, despite religiously covering them as we were directed, Ben's ears would gradually creep forward until they were again protruding significantly. We went back to see Dr. W. He had been featured in People magazine as the 'Smile doctor' because he was an expert in surgery that enabled kids with Moebius syndrome – a condition that caused weak or paralyzed facial muscles – to make their first smiles. We were surprised that he hadn’t been able to work a similar miracle with Ben's ears.

Dr. W said that he hadn't taken enough cartilage out, and that cartilage had "memory" – it always returned to its original position. He'd been worried about Ben's ability to wear hearing aids if he took more cartilage out. He wasn't sure how to make things better and referred us to Dr. F, a surgeon who specialized in constructing ears in children born without them.

Dr. F was surprisingly cautious. "He'll look different," he said, assessing the impact of additional surgery. "But he won't necessarily look better." How had we moved from a simple, quick-fix ear operation to this sobering statement?

As a parent, I felt duped. Why had the otoplasty repeatedly been explained to us as a simple procedure that would correct Ben's ears? Why was there a steady barrage of media stories recounting success with much more complicated and extensive plastic surgeries?

Dr. F said it was because Ben's ear structures weren't normal to begin with. If you have a normal body structure, he said, it's possible to enhance it – which often means making it bigger or smaller. But it was another kettle of fish when you didn't have the normal structure to work with. In other words, the people who most needed plastic surgery were the ones least likely to benefit from it.

"Ben doesn't seem to be particularly bothered about his ears," Dr. F said.

Was it because Ben had an intellectual disability that he didn't think it mattered? Or was it really that challenging technically? I'll always wonder. A quick Internet search for “lop-ear deformity" produced numerous plastic-surgery sites with impressive before and after pictures.

It grates on me that Ben's ear operation wasn't successful. We were trying to do something relatively minor to help Ben blend in just a little better. We knew he would always stick out with his short stature, developmental disability and inability to speak, but at least his unusual ears wouldn't draw attention away from his face, which in my eyes was beautiful.

Perhaps I should have consulted Ben's sister Lucy before deciding on the ear surgery.

"I just love Ben's big ear," she said spontaneously the other day, while sitting beside him at dinner.

Wow, I thought. Ben had always been a given for Lucy, who was born when he was a toddler. I had never heard her comment on his appearance.

I assumed she was talking about Ben's cupped ear – the one that is the most protruding, the most noticeable, and which most resisted the surgeon's handiwork – rebounding vigorously from attempts to refashion it flat against his head.

"No, I mean his taller ear," she said. His taller ear? How could his less-affected ear be called his "big ear?" Apparently Lucy, now 12, saw something completely different from me when she looked at Ben.

"Flippety flop, flippety flop," Lucy said lightly, acknowledging both the unusual nature of her brother's rabbit-like ears – and her complete acceptance of them.

Homework

Thursday, April 12, 2012

Friends? Where?












By Cheryl D. Peters

Many of the blogs I follow regularly have been talking about friendship a lot. Even here, Louise has been talking about it as well. (Side note? When I read about Ben's birthday party, I wanted to call Louise and ask if I could come. Everyone needs and deserves friends along this journey called life.

A little background about myself and my family. I am a young (ish) mother to two beautiful little girls, Lauren who is 5 and Jillian who is 3 1/2 (photo left) and has been diagnosed with spastic diplegia cerebral palsy (CP). We live in Toronto with my husband and cat. One would say we don't quite fit in here. We arrived in 2007 for a three-month contract position for my husband's job. Since my husband is such a rockstar, three months has now turned into four years. We left all of our friends and family behind in Nova Scotia, and it's been quite the adjustment period.

I've always been a pretty social person. After growing up as a military brat, I adapted well to change and strived to meet new people. I suppose that's why I enjoy volunteering with Holland Bloorview so much. When we first arrived in Ontario, I had vowed to keep in touch with my friends back "home."

Meeting new people is strange when you're an adult. I can't just run up and ask them if they want to play with my toys with me. ;) Now that we have a special needs daughter, we're not eager to move away from here. Funny how things change.

I try not to feel sorry for myself, but I'm realizing how difficult it is to maintain great relationships with my friends from Nova Scotia while caring for a special needs child.

Shortly after Jillian was diagnosed, I had the pleasure of going out for dinner with a few other local girls. Funny, we were a group of special needs moms that needed some time away. I guess I brought up something about CP and later that evening, one woman confided in another friend of mine saying "I'm SO tired of hearing her talk about Cerebral Palsy all the time! Does she not know how to talk about anything else?" Ouch. Early into the diagnosis, I do realize I brought it up a lot, but it was mostly because everything was so uncertain. This woman and I never spoke again.

The friendships that bother me the most are people that I thought were my close friends. In fact, I was just "unfriended" on Facebook by someone I considered pretty close to me and my family. In fact, she was named as the godmother to our children. I do realize I haven't been the greatest friend as of late: I'm stressed and worried about school and an IEP process, not to mention worrying about spending enough time with my "typical" daughter as well as continuing all of Jillian's therapies. I tend to blame myself, that I should have been a better friend, but there comes a time when you reflect back and say "Well... you either call and talk about CP and dominate the conversation or you just say you'll call on another day...The phone works both ways and the beautiful thing about technology is that it can bring people that are farther apart, closer together."

So here I am. Four years into a three-month contract stay wondering where do you go to find friends? Perhaps I should put an ad in the paper. ;) I am so lucky that through volunteering with the family resource centre at Holland Bloorview that I have met some pretty fabulous people, and for that I'm eternally grateful.

Cheryl D. Peters is a member of Holland Bloorview's family advisory and blogs at The Beautiful Side of Hectic.

'My friends dropped off'

We are fine enough is a stunning film that chronicles the life of Charlie, 5, a boy with severe autism, in still photos and the candid words of his mother Cynthia Bartlett. It was produced by photojournalist Marc Schlossman.

Wednesday, April 11, 2012

A must read on community















Rachel Cohen-Rottenberg blogs at Journeys with Autism and contributed a brilliant post to a collective blog on Neurotribes called Autism awareness is not enough: Here's how to change the world.

Two of the points she made stopped me in my tracks.

Remember that talking with a disabled person is not an heroic act. There is absolutely nothing required in the way of superhuman patience to communicate with a person with a disability, and stopping to listen to someone with atypical communication, far from being a charitable act, is an act of bringing a fellow human being into human community. Social inclusion and interaction, when someone desires them, are basic human rights that no disabled person should have to request, and that no able-bodied person with an ounce of ethical understanding should refuse.

Go outside your comfort zone. However uncomfortable, awkward, or annoying it may feel to deal with someone who puts out unexpected nonverbal signals (or none at all), or who speaks in an atypical manner (or not at all), it doesn’t hold a candle to how excruciating it is to go through the world isolated because people just feel too uncomfortable, awkward, or annoyed to deal with you. The discomfort, awkwardness, and annoyance of able-bodied people may only last a minute, or a half hour, or an hour, and then they go back to their regularly scheduled lives. Please imagine how it feels to keep meeting up with a world full of people who turn away, every day, because their discomfort trumps our longing.

I have asked Rachel to write a blog for us. She is a wife, mother, writer and artist who lives on the autism spectrum. Is there an issue or topic you would like Rachel to address? Please let us know!

Stuck in the nest













Last night two parents attending Donna Thomson's talk spoke about trying to obtain funding to create a group home for their adult children.

One dad noted that at age 21, when schooling ends, so do any kind of meaningful daily activities for their children.

The parents said that in their research, they had learned that there are about 21,000 adults aged 21 to 36 in Ontario receiving Ontario Disability Support Program funding who are in effect "sitting at home with Mom and Dad, watching television." They said that another 50,000 young adults with disabilities would come into the ODSP program in the next five to seven years. That's a lot of young adults sitting at home with Mom and Dad.

I don't know if these numbers are accurate, but it seems clear that we are in a crisis that is going to deepen.

This piece in the Globe today looks at the decades-long wait for a group home for adults with intellectual disabilities. Parents last night noted that they were told that the only families receiving housing for adult children in the province include parents in their 90s.

Donna Thomson said that securing funding for supported housing for our children is a puzzle we need to put together from non-traditional sources in the future.

Pain













I left our talk with author Donna Thomson on a high last night. She filled my head with ideas for creating a life my son values, new economic and philosophical lenses for looking at disability issues, and the notion that we as parents could align ourselves as a political movement with other groups involved in giving and receiving care across the lifespan (seniors and children).

At 1:30 a.m. Ben woke me up complaining about his right knee (the one that wasn’t operated on). He couldn’t straighten that leg and was in a lot of pain.

As I walked him back to his bed, largely carrying his weight by propping him up under his arms, he hobbled along. I looked down and hated his twisted legs and the pain they caused him. Sometimes I’m still struck with ‘How could this have happened? Why?’ Of course I know the answer, that his genetic deletion means his body can’t read its DNA instructions properly. In this case, a gene that acts in most people as a tumor suppressor doesn’t work, so bone leaks out in different places – much like a tube of toothpaste that has cracks. I understand the technical why, but not the bigger picture of why this has to happen to my son – why ALL of it has to happen to him. Why to him and not to me? Why to him and not my other children? I know the answer to that is “Why not?” but I don’t want that answer.

We saw his surgeon a couple of weeks ago to find out what we could do about the knee pain that flairs up every few days. Not much, he told us. Because Ben has dozens of benign pieces of bone in the wrong places, it’s very difficult to pinpoint exactly which one is causing the problem. The surgeon asked me if I wanted to feel and hear the ‘crunching’ of his knee when he manipulated his leg and I didn’t. I may have misinterpreted this, but it sounds like the muscles or ligaments get caught on these pieces of bone, causing the pain. I gave him Tylenol last night, knowing it probably wouldn’t be effective.

I lay in bed with a lump in my chest waiting to see if Ben would get up again. It’s horrible when he moans.

He went back to sleep, but this morning he woke in pain and didn’t want to get out of bed. He kept his right knee bent and didn’t want to straighten it. When I tried to put it in the brace to stretch it, he began groaning and couldn’t tolerate it. We put an ice pack on it and then heat, but it didn’t seem to help.

I thought about giving him a dose of hydromorphone, the narcotic he had following his surgery. I remembered calling the hospital at that time and speaking to a resident in the middle of the night to ask about dosing. “Is he breathing?” the person asked. Apparently hydromorphone can slow breathing in people with respiratory problems. I went with the Tylenol instead.

Ben couldn’t get back up the stairs to the washroom before school, so D’Arcy had to carry him on his back. Then he had to be carried down our 29 stairs to the road.

I felt guilty sending him to school but I didn’t know that keeping him home would help and I had to go to work. We sent the wheelchair, which Ben hasn’t used at school for ages. I messaged his teacher and assistant and sent in some Tylenol.

Then I e-mailed his surgeon to ask about the hydromorphone and whether it can be used occasionally.

“I thought his surgery was supposed to STOP the pain,” my younger son said, as he watched Ben on the couch moaning.

“Unfortunately he has dozens of bony growths throughout his body and they can’t all be removed,” I said.

I just had a note from his teacher suggesting we take him back to the surgeon if it becomes unmanageable. But I’m not sure that the surgeon could do anything.

Tuesday, April 10, 2012

Author Donna Thomson speaks tonight!

I am thrilled that Donna Thomson, author of The Four Walls of My Freedom, is our BLOOM speaker tonight in Letting go: Find 'home' for your adult child (click on link for time and other details).

Here Donna talks about her book at the International Festival of Authors in Toronto. Hope to see you tonight!

Sunday, April 8, 2012

More on friendship








I had the privilege of speaking with two other parents about friendships and children with disabilities on TVOParents last week:

The social world of kids with special needs


Thursday, April 5, 2012

'I manage Carly Inc.'

















At the age of two, Carly Fleischmann (centre) was diagnosed with severe autism and an oral-motor condition that prevented her from speaking. Doctors predicted that she would never develop beyond the abilities of a small child. Then, at the age of 10, she had a breakthrough when she typed a message on her therapist’s laptop. Seven years later she’s in a gifted program at a regular Toronto high school. Carly’s Voice: Breaking Through Autism, is a new memoir written by her father Arthur Fleischmann, which includes much of Carly’s writing. I interviewed Carly’s mom Tammy Starr (photo right, with Carly's twin sister Taryn left) about their experiences.

BLOOM: How does it feel now that the book has come out?

Tammy Starr: I’m very proud of the book. I knew Arthur had written a lovely and important book. But for me it was nerve-wracking. Even though my life has been public in my role as an advocate for Carly and other families with children with autism, this was very personal. I’ve been out there as a fighter, but I’ve never had our personal life revealed to this extent.

BLOOM: I understand that initially you didn’t read the book. Why?

Tammy Starr: I started to read it a number of times but each time I started to cry. It was too hard to take. I knew the story – it was my life – but I found it difficult to relive. It was hard enough to go through it the first time. This book took a lot out of Arthur emotionally. I never would have been able to write it.

BLOOM: I’ve only just begun the book, but I can see that Carly having a twin, Taryn, would accentuate the differences in their development and also in how people treated them.

Tammy Starr: You can see how one is living a typical, full life on a very normal trajectory and the other one is being left behind in many ways. Carly wasn’t able to hold her ground or keep up with peers, but also, people who knew I had twins would invite Taryn to their child’s birthday party and not Carly. At one point Carly was too young to understand, but obviously there came a time when I’m sure she understood what was going on.

BLOOM: It seems they have a special bond.

Tammy Starr: More than I can understand. It comes out in the birthday messages Carly sends to Taryn. The other night Carly was having a hard time falling asleep and kept coming out of her room and we were really tired. Taryn was still up and running around, and I said: “Could you please help us?” I don’t generally ask her to help us. I want to keep her relationship with Carly as a sister not a caregiver. The next thing I knew Carly was giggling and giggling in her bed and Taryn left her room and Carly didn’t come out. They have this closeness, this bond. I really didn’t know in the beginning how much Carly meant to Taryn. I didn’t know if she was an embarrassment or what. There were times in the tween years where Carly did embarrass Taryn, but all kids embarrass their siblings and Taryn’s past that. It’s hard for Taryn. On the one hand, she has all these friends and an active social life and just got her G1 driving licence. And when she leaves the house she leaves her sister behind. But I’ve never said “Please include Carly.” That’s not fair to either of them. Carly doesn’t want to be somebody’s burden.

BLOOM: What were the first 10 years of Carly’s life like, before she could type?

Tammy Starr: She wasn’t aggressive, but she was destructive to things. You could never leave her alone. She didn’t stop moving. We used to say she was worse than the Energizer bunny. She had these compulsions pushing her and she wouldn’t sleep and we’d lie with her in bed. At 1 or 2 in the morning we’d think she was just about to drift off and she’d bolt up in bed and start emptying her dresser. Even though we were fortunate to have help over the years, it was a 24/7 proposition and we always had to be on our guard. If someone wasn’t with her, she wasn’t safe by herself.

BLOOM: You mentioned that you and Arthur had different roles in raising Carly. Can you explain?

Tammy Starr: In general I’m Carly’s business manager. I manage Carly Inc. I’m the fighter and I’m the one out there in court, but I’m not her therapist or caregiver. I’m her mother. I make sure everyone is there and everyone shows up and all the pieces are in place. But I’m not the one that delivers her programs. I’m not a patient person. I’ve also been sick a lot. I’ve had chemotherapy twice since the girls were born, as well as depression. Arthur has much more physical and emotional stamina to be in the trenches with Carly. He’s been closer to her on a parenting level. I’m the one who gets all the experts around the table for a team meeting.

BLOOM: What has been key in unlocking Carly’s communication?

Tammy Starr: The collaboration and dedication and imagination of her two main therapists – Howard and Barb – in terms of delivering programming to her through an Applied Behavioural Analysis (ABA) lens. They were constantly brainstorming about what they’d done and what was next. They never gave up on her and always pushed her. She had a high level of consistency and intervention over many years. All of Carly’s waking hours were delivered in an ABA environment.

BLOOM: What about technology?

Tammy Starr: The two main ones she uses are WordQ, a word-prediction software developed at Holland Bloorview, and Proloquo 2 Go, a communication software. WordQ allows her to type faster. With Proloquo, Carly will anticipate the words or phrases she wants for different activities and write them on her laptop, and then Howard will program them into Proloquo. Before we went to Los Angeles over the March break, she thought of specific things she’d want to say knowing who she’d be meeting. And before she went to camp she created lots and lots of pages to ensure she wasn’t misunderstood. For example, she has comments like “I need a break” or “Don’t take this personally. It’s my obsessive-compulsive disorder (OCD).” It allows her to explain herself to the world.

BLOOM: What did you learn about Carly after she began typing that you didn’t know before?

Tammy Starr: A ton. We knew she was smart and learning all the time. But we didn’t know she was just like her sister Taryn, except she has this body that doesn’t cooperate. Her brain and her sense of humour are like any other typical kid. I think we’re going to find that common stereotypes about people with autism are so off the mark. We learned Carly has so much empathy and concern for other people and wants to help other people. The idea that she’s closed off and not wanting to be a part of things is a bunch of crap. These kids want to be part of the world and they’re very sensitive and emotional. But they might not be able to show it. We learned Carly was loving and very aware of everything that was going on, but she just couldn’t communicate it. Being non-verbal doesn’t mean being disengaged or not aware or spaced out. It means your mouth doesn’t work. I feel badly about things I said in frustration or anger in the past because we didn’t know how aware she was.

BLOOM: What’s something you had wondered about Carly that you asked her after she began typing?

Tammy Starr: One of the things I said was “What do you think of autism?” She wrote: “I have it and people don’t want to see it.” At the time her self-esteem was very low.

BLOOM: What does Carly’s breakthrough mean for other children with autism?

Tammy Starr: We have to assume that that child understands everything you’re saying and speak to them and treat them like any other child. People still speak to Carly’s therapist or me, instead of talking directly to Carly. As Carly says, people talk in front of her back! You can never judge a book by its cover. Never take anything about these kids at face value. There are kids in there and when parents see glimpses of light and intelligence they’re real. And you have to go on that and believe it.

BLOOM: How would you describe Carly as a teenager?

Tammy Starr: She wants to be a typical teen like everyone else. She wants to go shopping and talk about boys and fit in. She has the same hopes and dreams in terms of school and travel and relationships. She and Taryn both want the same types of things.

BLOOM: How did Carly catch up academically once she began typing?

Tammy Starr: She’s had little formal academic exposure. It’s been in fits and starts because of placements that worked or didn’t work. But she has a photographic memory and it permeates everything. “I’ve never forgotten anything I’ve heard or seen,” she says. She says she can’t look at things straight on because her mind takes 10,000 pictures. She’s in a gifted program now and she takes a lot of the social sciences. She has an educational assistant with her. The curriculum is modified so that the teacher is satisfied that she knows the work. If there are 50 questions but she can show she knows the material in five to 10, that’s what she does.

BLOOM: What are her dreams for the future?

Tammy Starr: When she first started writing she said she wanted to work in a bagel store. Now she’s intent on going to the University of California at Los Angeles. We went on a tour while we were there recently. She loves interviewing celebrities and part of me thinks she will be doing something that involves journalism and writing. Temple Grandin is her hero. So perhaps she’ll do something similar in terms of writing and lecturing and travelling.

BLOOM: You mentioned that Carly struggles with OCD.

Tammy Starr: When she was 11 she was covered in bruises and we had her admitted to SickKids and they said she’s self-injurious and one doctor thought she was attending to voices. That made us laugh. Later on, Carly told us she was slapping herself to stop herself from doing something more destructive – like stripping the beds or emptying the armoires. It was a coping strategy for the OCD. She was trying to manage her inner compulsions and anxiety. Her OCD is something we still work on with her occupational therapist and social worker.

BLOOM: Have you been able to find any balance in your life as a parent?

Tammy Starr: When I’m in Toronto it’s full throttle and all-consuming. I get out of town when I can and I call it my autism-free zone. I have a good network of friends, although I tend to isolate a lot.

BLOOM: Tell me a bit about your autism advocacy work.

Tammy Starr: I have a strong sensitivity for the underdog and to not getting anything less than what a child needs. I haven’t always felt like I fit in and I was bullied when I was a child. So I’ve worked hard to advocate for families in the province who don’t know the ropes. The part I find frustrating is that there doesn’t seem to be a new generation of parents of kids aged five or six picking up the gauntlet.

Tuesday, April 3, 2012

IQ Schmy-Q or 'IQ is overrated'

It bothers me that services for adults with developmental disabilities in Ontario hinge on intelligence quotients (IQ) alone.

When we tried to get service at an agency that serves children and adults with intellectual disabilities, we were told that Ben's psych assessment from last year wasn't adequate because it didn't state IQ. Eligibility is restricted to those who score in the 2nd percentile or under in cognitive functioning.

Ben's assessment is a detailed, 10-page report documenting testing over multiple visits. It provides a very clear picture of Ben's strengths and needs. In fact, I showed it to a developmental pediatrician who said that a simple IQ score was meaningless in comparison to the depth and breadth of knowledge contained in the psych report.

But all the agency cared about was the percentile ranking. In fact, they said Ben would have to be tested AGAIN in order to get this quotient, before qualifying for service.

Ben's psych assessment last year took place at Holland Bloorview over four mornings. Instead of using the information contained in this document -- which our developmental pediatrician says is rich -- the agency wants my son to undergo more testing -- at the public's expense -- so they can pin him with an IQ.

Something is wrong when that kind of weight is placed on one test and one number -- particularly for a boy who can't speak -- and a detailed, timely report by an exceptional, well-respected psychologist is ignored.

This morning Susan Senator, author of Making Peace with Autism, posted a link on her blog to Autism and IQ, an interesting piece at theAutcast.com. Check it out!

Monday, April 2, 2012

Ben and the Raptors

Marjorie took Ben to a Raptor game for his birthday last night. Here's her account:

Ben loved the game so much!!! The first thing was we moved seats as the usher saw how hard it was to get down the stairs. We went from 300 level, highest level to 100 level, lowest. It was very exciting and we sat in wheelchair seating which means no stairs, close to family washroom, close to PSP games, cup holders and ordering food from our seats, woo hoo.

Ben danced, a lot. He tried really hard to get in the Jumbotron as he whipped his head around to the song "shake your head." He cheered with his voice and watched very carefully.

He caught on to the game very fast. He only asked what team we were and what a free throw was. Otherwise, he cheered for the Raptors, covered his eyes when they missed a shot or had a free throw, hugged me when they won and booed the other team.

At the end of the game we got to go down even further to sit and listen to some Raptors give speeches. Ben listened a bit and waved as they came out. He went on to the court and did a lay up. He didn't get it in but his team won the free throw competition. He got a hat, a shirt, some candy and his picture taken a billion times by Maple Leaf Sports Entertainment. I will bring the shirt and candy next time. He also met tons of people that he shook hands with, gave five to and said thanks to without prompting.

We are definitely going to go again!

Unlocking my self






















In honour of Autism Acceptance Day, The Joy of Autism blogger Estée Klar writes a moving piece for Holland Bloorview's Family Resource Centre about what her son Adam, above, has taught her as a parent. Thank you Estée! Louise