Icy

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Sad mama bear

By Sue Robins

In the health system, I’m an advocate for Aaron, my son with Down syndrome. I’m prepared, articulate, and know how to persistently and politely lobby for changes in his care.

But usher me into the school conference room for a meeting with principals and teachers, and I turn into a blubbering mash-up of tears and rage. I’m a mama bear, to be sure, but a shrill weepy one. My rational and eloquent advocacy with health professionals flies out the principal’s window. I walk out feeling defeated, overwrought, and with a vulnerability hangover.

Upon reflection, I think it’s because when I was a student, I was a nerd girl, a library girl, and a good student. I got into trouble only twice in 12 years: once it was in Grade 8 when I was caught red-handed by Mr. Matwichuk reading the book Endless Love in social studies class.

But for my son with Down syndrome, who is only 10?
  

At least once a week, there’s a phone call or text from a teacher, principal or assistant about his “behaviour.” There are formal meetings in the school office or impromptu discussions held in his classroom after school, where I’m crammed into his chair, my knees bumping up against his desk.

In those moments, I feel very small. I am that 13-year-old girl caught red-handed with a semi-soft-porn book in my class (what was I thinking?). But this doesn’t happen twice in 12 years; it’s a weekly ritual. Each time, I feel my face flush and my heart beat faster, and immediately I’m teetering on the edge of that cliff, about to lose it.

Nobody calls me in the middle of a work day to tell me what an awesome kid my son Aaron is. How he’s learned to count to 100 this year, and how his reading skills are blossoming. (I do get that lovely feedback from the teachers, thankfully).
  

The calls are always about behaviour and it’s always labelled “bad.” I talk about how behaviour is communication. They talk about how behaviour needs consequences. By the end of the conversation, I want to stand in the corner with a dunce cap on my head.

All I want for Christmas is to walk into the school with my health-advocacy hat on, the one that allows me to use my voice effectively and speak rationally about what I want for my boy. And for once, just for once, I don’t want to cry in a school meeting. I am the saddest mama bear that you ever did see.

This post was adapted from a piece on Sue’s blog. 

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Let's find the missing 'family-centred' pieces

By Jacqui Getfield

Recently, I attended two events about family-centred care. I learned a lot but came away with conflicting emotions. I was intrigued and happy yet also very concerned. The conferences confirmed a suspicion that I’ve held since I first received my children’s diagnosis: professionals tend to ignore the influence of a family’s culture, structure and finances on its ability to care for a child with disabilities.

Most of the presenters seemed to avoid talking about the “social” or “cultural” factors that I believe must be taken into account with any “medical” or “clinical” considerations of the child and family. I kept wondering how is it that the “social” considerations were being ignored when the family is a clear social construction? This was very troubling, for me.

I’m the mother of twins who are challenged with what it means to live on the autism spectrum. I’m also an immigrant from Jamaica. Over the past three years, I’ve been puzzled by the expectations of some healthcare professionals.

When my boys were younger, therapists couldn’t understand why I wasn’t overly concerned about their social development.

I told them to consider a few things in my experience:

In my Jamaican culture, children, especially young boys, develop much later than girls. In Jamaica, it’s not uncommon for boys’ speech to be somewhat delayed until they’re four- to six-years old. And since my boys were born prematurely and are twins it makes the expectation for speech different from if they were singletons born full-term. Their ear, nose and throat (ENT) specialist, their pediatrician and other moms of multiples allayed any fears I may have had: they said delayed speech is not uncommon for multiples. And, everyone reminded me that each child develops at their own pace.

Further, I expected my children to pick up speech in our single-parent family with no older siblings more slowly than they might in a house with two or more adults plus older children. In the latter, it would be quite normal for toddlers to hear and organically absorb the spoken language that takes place almost constantly.

In my culture, Jamaican mothers do not carry on incessant, “irrelevant” chatter with children who themselves can’t speak. As for mothers conducting “pretend play” sessions and arranging play dates, that was unheard of—as though working mothers didn’t have enough to do!

Playing with other children is another area where immigrant families may have different expectations from the mainstream. While in both countries it is typical for young children to play with each other, in Jamaica there’s been comparatively less emphasis on pre-school or daycare and parents certainly don’t organize play dates. So there aren’t the same opportunities for socializing among children who aren’t related.

Young children in my culture play mostly with siblings or relatives or with their toys in their own homes. Older children may play with others in the neighbourhood in their own backyards, on the street or elsewhere. But for certain, these are not arranged play dates where parents are hovering in sight and earshot.

Parents in my culture may not notice a child is developmentally delayed until after they start school. It is during the early years of primary school—when children are between six and nine years old—that a parent first learns about their child’s disability from a teacher in Jamaica.

There has been very little emphasis on “learning through play” in Jamaican primary schools. Play is an informal activity between and among children. Adults are not expected to be integrally involved in unstructured free play—in or outside of school—which is the way things were in Canada just a couple of generations ago! Today in North America the mainstream parenting style has earned us the name “helicopter” parents since we feel compelled to hover.

When my children were not making eye contact at two years old, I simply didn’t think it was important. Personally, I didn’t become aware of the cultural importance of eye contact as a means of communication until I arrived in Canada.

Until recently, I have always thought this “eye contact” was an expectation among adults, only. Among immigrants, there are different cultural expectations regarding the observance of critical milestones such as eye contact. In Canada, in some immigrant households, making eye-to-eye contact is a social “no-no” especially for children. This may imply that you are being confrontational or not showing respect to someone in authority.

Over the past two years, since my sons’ diagnosis, I have come to understand fully that milestones are monitored extremely closely in Canada and if my children don’t meet these established milestones, they will be even less advantaged. So, these days I make the effort to determine the developmental milestones they must meet.

There are so many things that are different in Jamaica and Canada, even though they both share a common colonizing history. In my opinion, not only is it common sense for health professionals to be more mindful of the cultural realities of the families they see, but they need to consider the social and economic, as well.

Consider family A, headed by the low-income, less-advantaged mother who is an immigrant; who speaks English as a second language; who parents not one child with disability, but two; and who herself has a learning disability.

Now consider family B, headed by two non-disabled parents who are middle-class, non-immigrants, working professionals supported by a nanny and grandparents.

Shouldn’t family-centred care look remarkably different for each of these families?

Simple but important things can be barriers to family A. Things like transportation to therapy appointments; not being able to afford adapted equipment or to hire a babysitter; not being able to understand a hand-out about home therapy that’s written in English using clinical words; and not being confident enough to engage or communicate fully and openly with those in authority.

Similarly, some mothers may not offer their opinions regarding the care or treatment of their children without first consulting their husbands and older females for their input or “buy-in.” For example, in some cultures decisions regarding whether or not to diagnose and subsequently “label” a child, are life-changing decisions that are not to be made on the spot by a younger “less empowered” female.

Not only does Family A not have the financial and people resources that Family B has, but many immigrant parents are afraid to speak out. In some cultures it is certainly not acceptable to appear to oppose, criticize or speak out against those in authority. Most immigrant mothers from the developing world, regardless of culture, have not been taught how to advocate nor have they been taught that it is okay to advocate. They may fear that asking for services or changes in how services are delivered will negatively impact their child’s care because the authority figures may disagree and take it out on the children, passive-aggressively or overtly!

So in my opinion, for effective implementation of family-centred care, institutions must work closely with families and they must invite parents to share the cultural, social and economic realities of their everyday life. These realities must be part of the “family-centre care” conversation. They are just as important as the child’s medical diagnosis and treatment options because without an understanding of them you can’t have cooperation and true collaboration. These realities are critical to the success of any prescribed care and treatment.

When Jacqui Getfield is not engaged with her sons Jay and Em, she steals time away to provide corporate communications, writing and editing services through her company, Say It Write Communications. To contact Jacqui directly, e-mail jacqui@sayitwrite.ca

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Where is she now?

Two weeks before the end of her Grade 10 school year, Irene Tran—a bubbly teenager who excelled academically and was an accomplished pianist—was rushed to hospital with a ruptured brain aneurysm.

When she came to Holland Bloorview for rehab, Irene was paralyzed on the right side, struggled to speak and had lost the ability to read, write and do math.

Irene’s dreams of going to university were derailed. She couldn’t return to the academic stream at her school. Instead of graduating from high school in two more years, she had to put in five more to earn her diploma.

Everything changed, Irene says, but it wasn’t all bad. Now, seven years later, Irene’s at university in early childhood studies and works part-time at one of Holland Bloorview’s integrated nursery schools (see photo above).

Before her injury Irene says she had a rigid way of viewing success. "I’m going to university and I’m going to grad school by the time I turn 22," she remembers saying.  

"After my rehab I began volunteering at Holland Bloorview in the school and in recreation therapy. I found I really like working with children and with kids with special needs. Then job opportunities came up because of my volunteer experience.

"...I never would have gone into this field prior to my injury because I didn’t have exposure to people with disabilities."

Read about how Irene managed life after brain injury in the winter issue of BLOOM magazine, out at the end of January. E-mail me if you'd like to receive a copy lkinross@hollandbloorview.ca

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Yippee!

BLOOM wins first in the Activism and Social Justice category in this year's Canadian Weblog Awards.

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How stories humanize us

Historically BLOOM has been the voice of parents raising children with disabilities.

But there’s value—to parents and professionals—when clinicians share stories about the emotional side of their work in children’s rehab.

My “aha” moment came when listening to an occupational therapist describe how anxiety-provoking it was for her to tell parents that their child needed to be referred for a wheelchair. Often, the parents still held tight to the hope that their child would walk.

The therapist spoke about how she had to fight putting off these conversations, and how she wished there was something she could do or say to lessen the emotional pain she knew the parents would experience. She had to approach these talks with a great deal of humility, knowing that she didn't have the "magic bullet" the parent sought.

While listening to this therapist, I suddenly saw myself on the other side of the fence as the parent receiving the news that my child would never do something—in our case, speak.

And knew how I hadn’t been able to hear the therapist, how I had shut down inside. On the outside I’d be saying “Yes, I understand,” but on the inside I was dismissing this therapist, scratching her off our trusted “team,” and probably even plotting our next speech intervention. I never thought about how it felt to be the professional in these conversations. If asked, I would have said: “I don’t care how the professional feels, because this isn’t about the professional, it’s about my son.”  

But listening to this therapist, I felt tremendous empathy for her.

I could see that we experienced some of the same emotions and I saw this as a bridge to our experience.

I also felt a knot of guilt in my chest: ‘I wouldn’t want her to have to deal with a “bull-dog” parent like me,’ I thought, and this revelation surprised me.

We talk a lot in family-centred care about partnership between parents and health professionals. But I hadn’t been a “partner” in planning my son’s care when I held rigidly to one speech outcome for my son, dismissing any contrary evidence I was presented with.

Hearing a professional speak about the emotional side of her work brought home the human impact of children’s rehab on professionals and made me care about it.

If we’re going to humanize health-care, it’s not just our children who have to be seen as full human beings. It’s the people who work with our children, too.

Stories can level the playing field between parents and clinicians.

Instead of positioning the professional as the all-knowing, invulnerable partner in the clinical relationship, and the parent as the helpless, needy one, desperate for answers, candid stories reveal the strengths and limits of us both. They reveal our common humanity.

One of our goals at BLOOM is to bring you more stories from clinicians, researchers and students.

Using the search button on the right, check out How one boy’s life changed mine; 5 things I wish parents knew and Let’s rethink ‘normal’ in children’s rehab.

Happy weekend!

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A voice for Andrew

Holly Zhuang's brother Andrew (above left) died in September. Holly spoke for him and 300,000 Ontario children with special needs at a meeting held Tuesday by the Provincial Advocate for Children and Youth to explore ways to make youth with disabilities better seen and heard.

Holly described how Andrew's severe cerebral palsy gave him "little to no control" over his body, yet he developed a unique method of moving his tongue to communicate yes or no. "It was his outlet, his voice," she told a room of professionals who were gathered to brainstorm ways to raise the visibility of  youth living with disability in Ontario.

Yet while Andrew's family understood his language, Holly told the story of one doctor who didn't take the time to decipher it.

Andrew "battled many illnesses," she said. In November, 2012, he had surgery to reduce his tight muscles.

Because of his spasticity, the stitches ruptured post-surgery. A medical resident "decided independently to stitch up his wound without anesthetic," Holly said, a total of seven stitches.

Andrew couldn't verbally protest this barbaric treatment the way other youth could.

"...I realized this nightmare occurred not because the intern didn't have enough time or didn't have a choice, but because my brother didn't have a voice."

Holly said she was excited to be part of the Provincial Advocate's efforts "to elevate the voices of non-verbal children."

She sang a song she wrote called Angel Breathe to describe her emotions when her brother suffered.

"I'm howling at the moon
Pouring my sorrow all to you
That's the only way I know how to numb myself."

Holly spoke of Andrew's "strength and courage and unbreakable will to live... To me he is my brother and our life was normal."

Now a music therapy student at Wilfred Laurier University, Holly said: "Andrew helped me become who I am."

BLOOM will report on the recommendations that come out of the Provincial Advocate's work.

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This is what beauty looks like

To celebrate the International Day of Persons with Disabilities yesterday, store windows in Zurich shops were filled with mannequins designed to reflect the beauty of real people with disabilities. Watch the process of creating the mannequins here. 

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'Disabilities' day and discrimination

It's the International Day of Persons with Disabilities.

If you're looking for an uplifting post, please see our piece yesterday about special-needs adoption.

At the moment, I am struggling with stories about discrimination against people with disabilities in accessing health care.

This piece is about a five-month-old baby with a heart defect okayed for a heart transplant, only to have this decision reversed two days later when it was discovered that the child had a genetic condition. The doctors said his genetic condition compromised his immune system, making him a poor candidate for transplant, and told the parents to take him home and love him till he died.

His mother went online and researched the syndrome, reading studies and contacting the expert her son's syndrome is named after.

The study authors and the expert said that the condition is not associated with immune problems and is not a reason to deny the child a transplant.

The syndrome is, however, associated with intellectual disability. And there's a long history of categorically excluding people with intellectual disability from eligibility for transplants because they're not seen as worthy of these scarce resources.

Please take a look at this excellent policy brief on the issue by the Autistic Self Advocacy Network called Organ Transplantation and People with Intellectual and Develpomental Disabilities.

And read the story to find out about the surprising, and happy, ending.

Now I'm off to a Special Needs Gathering organized by the Provincial Advocate for Children and Youth about "creative ways to amplify the voice of children and youth with special needs in Ontario."

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'You are going to be Dads'

At a recent BLOOM event I met a new dad, Rob Foslett. Rob's face lit up when he told me that he and his partner had recently adopted a young boy with autism. Of course I wanted to see pictures, so the next day Rob e-mailed me some. "It's been a great 39 days since Owen came to live with us and he has made our lives so much better!" he wrote. Of course I wanted to know the WHOLE story, so Rob wrote it and here it is! Louise

By Rob Foslett

I have a great life.

But three years ago, at age 46, this nagging feeling that something was missing in my life and relationship took hold.

My husband David, my best friend and soul mate, and I had a plan: We’d retire early, move back to Nova Scotia where I grew up, travel and get involved in community life.

But still, I felt alone and empty. I quit my well-paying job and spent a couple of months trying to figure out why.

I made a list of 20 things I wanted to achieve in my life. Number 20 turned out to be adoption. I realized the emptiness I’d been feeling was a sense of incompleteness that we weren’t a family.

David and I had been a gay married couple since 2004. I knew David was happy with our relationship and liked our life plan, but I was about to totally turn his world upside down by contemplating parenthood.
 
I love a challenge and I love change, but was David the same? This would be a true test of our relationship.

The first time I mentioned parenthood David stared at me like I was on some illegal drug. “No, I am serious,” I said. “We would make great parents and help out a kid who really needs us.”

I think he thought we were too old to do this, but I felt we had a lot of love and support to give.

David and I started the process by reaching out to Toronto’s Children’s Aid Society. We went through the phone screen and the in-home visit without a hitch. Then David went to the Adopt Ontario website and showed me a boy with a smile that left me speechless (more to come on that later).

The adoption process is long, soul-searching and intrusive. It includes being assigned a worker, education classes, police checks and interviews. We learned so much in the classes we took. We had three great presenters and they made us think about why we were adopting and how to parent—especially how to respond to a child who had experienced neglect and how to parent the child through the loss of their birth family and foster family. I started our adoption binder.

Were David and I ready for this leap? We decided we were. And we decided to adopt a child with special needs. My nephew, who is now 17, has a disability and I couldn’t ask for a better nephew, one who’s more loving and caring and focused on retrieving a pamphlet wherever he goes. My nephew has won awards at science fairs and his big thing is collecting brochures on everything. Last count he had over 5,000, all in order and on his computer.  

David works as a civil servant so his resources were vast and he had some experience with special-needs kids, so his comfort level was high. David knew lots of people who understood children with special needs and could talk to us about parenting and how to find resources. And answer every little question we had, like "Do they need round-the-clock care?"

I couldn’t get that little boy’s smile out my head.

As we progressed towards completing our homestudy with our social worker Susan, I sent for information on that little boy with that smile that made me smile.

It turned out that Owen had autism. You would think it would scare me. It didn’t, nor David. We had been reading up on applied behaviour analysis and the familiar traits of children with autism. The more I looked at Owen’s picture the more I felt this bond developing and I needed to know more.

February 9th this year was a date I’ll never forget. We were invited by our worker to go to a presentation that was being held by the various Children’s Aid Societies in our region. In the first part we heard real families who'd adopted and were living day to day now with their new child. They gave a very insightful look at adoption from the perspective of the adopting parents and the foster parents. After the presentation we had lunch and were told we could go through some rooms to see profiles of the various children up for adoption.

David and I walked around and found Owen’s profile. My heart stopped. And I mean that. It felt like we were so close to hugging him, but it was just a picture. It was nerve-wracking. The non-adopting world needs to understand that this experience for adoptive parents is just as much of an emotional rollercoaster as the traditional route of trying to have kids.

Would we be accepted to the next step? Who else was interested in this child? What would the interview process be like?

All these thoughts flooded our minds.

But I didn’t care about any of that. I saw him and knew he was the one. I turned to David.

“He’s the one,” I said.

David is the most supportive guy I know. But this time I could tell he was a little scared. And so was I. We had questioned becoming parents at our age, and being two guys, many times, but Owen took hold of our lives through that one picture.

Blondish brown hair, big smile, bowler haircut and red t-shirt. I still have the picture.

We filled out 12 more pages of paperwork and gave it to Owen’s worker. This paperwork was supposed to determine our true interest in Owen, and to demonstrate that we would be fit parents who could support him now and all his life.

Our worker e-mailed to say we’d been chosen to come in for an interview by Owen’s resource team, along with another couple. My heart sank at hearing there were other prospective parents. I felt alone, but I didn’t want to tell David as we were supporting each other. We didn’t talk about the other couple but instead we prepared for the presentation. It was on May 16th at 10:30 a.m.

I bought a pair of lucky runners—Adidas Retro High Tops—and we felt good. We walked in and Owen’s resource team was waiting for us. We learned that the other couple had decided not to go forward with their application for Owen. I was still nervous yet happy.

I gave everything I had and the meeting lasted about an hour-and-a-half. We were told we would know the team’s decision within 24 hours.

We decided to go to the nearest Canadian Tire and pick up a few things. I remember standing with the cart as David shopped, getting tears in my eyes, just thinking and fearing that maybe Owen wasn’t going to join our family. We drove home and got up to the steps of the house and heard the phone ringing.

“It’s probably a telemarketer,” David said. I picked up the phone and Owen’s worker was on the other end.

“Are you sitting down?” she said.

“Yes,” I said.

“Well, you are going to be Dads.”

I cannot put into words what I felt at that moment: a thousand emotions all at once. David and I hugged each other and cried.

And now the rest is history. We met Owen and now have more videos and pictures then we can count.

Owen is in school and has been accepted at the Geneva Centre for Autism for further therapy. I am actually right now sitting with him on the sofa as he watches his favourite thing on his iPad—subways. Owen is totally fascinated with subways and we have a Saturday ritual where we go each Saturday on the TTC and ride them. He can tell when a new subway car is coming, and when it’s an old one. He can tell the difference in ring chimes and knows what stops are most important: like David’s work, the Eaton Centre and our stop for home.

We have been challenged by him at home. One of Owen’s autistic “focuses,” as I call them, is doors. His outlet for overload of stimuli is opening and closing the front and back doors. We have tried to redirect him, as we say in the autism realm, by allowing him three specific kitchen cabinets that he’s allowed to open. We weren’t worried about him bolting out of the house as much as we were worried that he would catch pneumonia. You see, Owen would stand on the porch with just his pull-ups on and watch the door open and close if he could.

I guess it’s a good sign that he challenges us. A child with special needs I believe needs to be understood for who he is—for his strengths, but most of all for the love he can give. And Owen gives a lot.

I love my son. I cannot explain in measurement or precise words, but when I look at him I have the biggest smile and feel true happiness. David takes Owen on Jeep rides. After riding the subway, Owen’s favourite thing is to ride in the jeep to the park and go on the swing.

My most cherished memory of the three of us happened at our local splash pad. We’re laying on our blanket, the sun is warm and shining and the trees are gently swaying. Owen’s cuddling with us and looking at pictures of us on our iPhones.

“Is that me and Dave and Rob?” he asks quietly. 

“Yes, Owen,” Dave says. “That’s us. Are you happy, Owen?”

Owen replies with the hugest smile.

“Where’s Toopy and Binoo?” he asks. Toopy and Binoo are characters on a cartoon from Montreal and he loves them to death.

I guess that’s as good as we’ll get from him, I think. 

Then, out of the blue, he says: “I’m safe.”

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A lesson in love

Donna Kirk is the author of Finding Matthew: A Child with Brain Damage, A Young Man with Mental Illness, A Son and Brother with Extraordinary Spirit. Here she shares the challenges and joys in her family's remarkable journey to give Matthew (above left with his sister Kelley) a good life. Thank you Donna! Louise

By Donna Kirk

“Your son is a vegetable with a heartbeat.”

The head pediatrician at the hospital dismissed our first born child with a wave of his hand. My husband Ed and I were dumbfounded.

“Your child will never know you or progress beyond the infant stage. I recommend that you institutionalize him as soon as a bed becomes available. I’ll give the consent forms for the home to the neo-natal nurses.”

Our child’s name was Matthew. He had suffered oxygen loss at birth and could neither suck nor swallow. He was 10 days old and had been at the children’s hospital for nine days. As we listened to the doctor, I held our beautiful blond baby in my arms. His blue eyes looked up at me and he gripped my finger with his tiny hand. Matthew started to cry and so did we. The doctor looked at him, then turned and walked away. He hadn’t once called him by name.

We dubbed this pediatrician Doctor Doom and repeated his words to the nurses. One nurse handed us a box of tissues and told us she had 40 years’ experience with brain-damaged babies. In her opinion, Matthew would progress. The nurses became our first advocates. We ripped up the consent forms for the children’s home.

Two months later we brought Matthew home. He could swallow, suck and hold his head up and he weighed a robust eight pounds. He was eating, and loving, rice cereal.

Even though he cried day and night, we adored our baby. Car rides soothed him and Gordon Lightfoot music put him to sleep. I never forgot Doctor Doom’s prediction that Matthew could die at any time and kept him close to me during the day. At night, I checked him often. We were glad he was our only child and we could direct all our attention to his needs.

Matthew smiled when he was four months old and turned over both ways at five months. Our Mississauga pediatrician was our second strong advocate. “Keep doing what you’re doing Mom and Dad,” he said. “Matt’s making great progress.”

At 14 months, Matthew still wasn’t sitting. His left side was weak and he toppled over when we played sitting games with him. One day in a grocery line-up, he was propped up in the cart to keep him upright. A woman behind us watched him with great interest. She asked how old he was. 

“Fourteen months! He’s still not sitting?” she said. “Is he retarded?”

“Not as retarded as you are,” I said. Matt and I cried all the way home.

Ed and I decided our son needed muscle power and enrolled him in swimming classes in a program that offered instruction to children with disabilities. Matthew soon learned the route to his lessons and cried all the way there. I cried during the session because I thought they would drown him. Afterwards, he laughed all the way home and I laughed with him. He was so smart.

In 1972, at age two, Matt was the only student from the swim program chosen for a documentary to be broadcast on national television. Ed, my mother and I watched the filming.

The swimming instructor carried Matthew into the pool and released him under the water. Then she got out of the pool. My mother gasped and covered her face with her hands. When I urged her to watch, she peeked through her fingers. Matthew swam to the side, reached up and pulled himself out, then sat on the deck.

I called Doctor Doom’s office at the children’s hospital. We hadn’t seen him since Matt’s discharge. I told his secretary to make sure he watched “the vegetable” swimming on national television. The next day she called back. Would we please bring Matthew in?

Doctor Doom examined Matthew and declared him to be a healthy two-year old. He actually hugged him before handing him over to me. I was the proudest mother on the planet.

____________

Ed and I wanted more children. I hadn’t conceived since Matthew’s birth so we registered for adoption. Our daughter Kelley arrived shortly after Matt’s second birthday. He refused to look at her, clung to me and cried all the more. Ed and I were up every night with two children. Then, when Kelley was six weeks old, I became pregnant. Our second son, Joseph, was born 10 months later. We had three children under the age of three.

Kelley and Joseph grew and surpassed their brother. They walked, talked, learned to use the toilet and slept through the night. Although Matthew walked when he was seven, he didn’t speak, needed diapers and awoke for many hours every night. I lay awake and listened to his shouts.

Matthew had digestion problems since infancy. He regurgitated food constantly. Then a strange behaviour crept in when he was about five. He started throwing up at will, particularly when our attention was elsewhere. Nothing we tried altered this behaviour.

Ed and I realized we didn’t have the skills to help him. The demands of our complex life overwhelmed us. We were exhausted and our marriage was suffering. 

When Matthew was eight, he went to live at a residence for children and adults with developmental disabilities. Within weeks, he stopped vomiting and learned to use the toilet. Although delighted with his progress, we felt like failures. Strangers were able to help the child we loved.

Even though we visited Matthew often and he spent every Sunday with us, Ed and I never adjusted to his life in a house with 12 other children with disabilities. And, the staffing was inadequate in our opinion. But Matthew seemed happy. He attended local integrated schools where he was a popular student.

At age 18, he started having what staff at the home described as rage episodes. He shouted and twirled in a wide circle, his face red and his eyes wild. These sessions ended with the ingestion of inedible objects: pens, pencils, whole toothbrushes and small plastic things.

Multiple surgeries were required to remove these items. Matthew was diagnosed with Pica eating disorder and autism. The home’s psychiatrist prescribed medication that initially made him docile, then had no effect.

In 1993, Matthew swallowed a rubber glove which lodged in his intestine and burst his bowel. After life-saving surgery, he wore an ileostomy bag for months until his bowel was reconnected.

Ed and I were convinced our son would die at the home. We had never stopped searching for a better life for him, and doubled our efforts. A community agency offered a model of service called homeshare, and they agreed to support Matthew.

In September 1995, at age 25, Matthew moved into a single family home in Oakville. A woman named Marguerite became his new caregiver. There were no other people with disabilities in the home. Matt could roam around his house without encountering locked doors. But all small objects and medications were locked away.

Marguerite  broke Matthew’s habit of leaving his room each night. Although he still didn’t sleep well, now he was quiet. She worked with him to enhance the universal signs he used to communicate his needs. Within weeks, he was calmer and slept better. The anger episodes lessened. Pica attempts were few, then disappeared.

Matthew enjoyed the community each day with Beverley, his job coach. They visited the library, malls, restaurants and the local YMCA. He had a paying job delivering newspapers and a bank account where he kept his money. For the first time in 17 years, Ed and I knew our son had a meaningful life. Marguerite and Beverley supported Matthew for 15 years. 

____________

In 2009, Matthew’s agitation worsened, culminating in a rage incident that required police intervention. Matthew was admitted to a hospital psychiatric ward. A psychiatrist diagnosed him with agitated depression, and over the next year, different medications were prescribed. When they failed to alter his condition for a consistent length of time, we agreed to electric shock therapy.

But a cure for our son’s mental illness was not to be. The day before his first shock treatment, he aspirated food and became critically ill with pneumonia. His lungs, compromised by many bouts of pneumonia, could not mend.
   

After a four-month battle, brave Matthew died on July 6, 2010. My husband and I, Kelley and Joseph, Marguerite and Beverley, and his limitless friends and advocates were heartbroken.

____________

Matthew taught us the rewards of support, advocacy and stewardship. He taught us the joy and despair of unconditional love. He was the person who inspired me most.

It’s hard to adjust to life without him.

Royalties of Donna's book go to Brampton Caledon Community Living, which supported Matthew for 15 years. "My husband and I also give out an award each year called 'The Reese Matthew Kirk Above and Beyond Award,'" Donna writes. "This is a cash prize, plus an opportunity to attend a profession-related course of the winner’s choice. The candidates are employees of BCCL chosen by their peers, who went above and beyond their job description to support the people in their care. There have been three winners since Matthew’s death."

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And the truth shall set you free

I remember when my son was still a baby, a psychiatrist told me that I needed to play a "PR role" in how I introduced him to others. He said people would make judgments and assumptions about my son's genetic condition, so I had to script a story that played up all of his strengths and minimized any impacts the syndrome might have on his health or development.

This didn't seem like a bad idea, initially. I was over the moon in love with my son. I expected others to see him the way I did: as a tiny Buddha, whose smiles were bookended with dimples, a baby who loved to babble, grasp medical residents' fingers, and listen to books about Elmo and exotic animals.

The only problem with this selective crafting of our story was that it made me feel a bit like I was wearing a mask. I brushed off concerns about my son's genetic deletion by saying "it just means his ears stick out. The worst-case scenario is that he might have a mild learning disability."

This was, in fact, the sanitized version of his syndrome that I received from the geneticist who diagnosed him, minus a couple of pieces of information (that he might have problems with bony growths and hearing, and that 75 per cent of these children had mild to moderate delays). Some of the information, like the stat about delays, I didn't understand. I didn't ask for clarification on the term—which I now know means intellectual disability—and no one offered it. Instead, I grabbed the vague descriptor like it was a Get Out Of Jail Free card.

I was meticulous with language. I didn't use the word "syndrome," which in my mind was associated with intellectual disability. In fact, for the first year or two, I didn't even consider my son to have a disability. When my sister-in-law suggested we might apply for some funding for kids with special needs due to his low muscle tone, I proclaimed: "But he DOESN'T have a disability!"

We'd been told that because his genetic condition was so rare, we couldn't predict how it would affect our son. So I was his spinmaster, weaving a narrative about his life that I felt was most likely to win acceptance with others and calm my own fears.

The problem with this "heavily edited" approach to disability is that it delays thinking about and coming to terms with differences and how they're viewed in our culture. It delays thinking about your own values as a parent and how difference fits with those values. It delays having to trash a bunch of simplistic platitudes you may have been raised on, like: "If you just try hard enough, anything is possible." It also creates an atmosphere of shame, of the need for secrets. If your story ever slips, what does it mean for your child's value? Or your own?

In short, writing and religiously promoting a story that denies or "airbrushes" out the challenging parts of a child's complicated condition stifles your own emotional growth as a parent and puts tremendous pressure on a child. It weakens our humanity, which I believe is based on an understanding that human life is full of fragility and vulnerability and ambiguity.

So whenever I hear parents of kids with disabilities or people with disabilities up in arms over what "can" or "can't" be said about disability I get uncomfortable.

The most recent instance was triggered by this piece by Autism Speaks' co-founder Suzanne Wright, whose grandson has autism. She wrote it as a kick-off to the organization's summit in Washington calling for a national plan to address autism, which she refers to as a crisis. She depicts autism at one end of the spectrum, describing children "unable to dress, or eat independently, unable to use the toilet, unable to cross the street, unable to judge danger or the temperature, unable to pick up the phone and call for help."

That is a reality for many people with autism and their families. There is no shame in that reality.

Hundreds of people responded to Wright's piece, many adults with autism and parents of kids with autism. Much of the feedback can be summarized in this response from an adult with autism: "Why do you make us out to be monsters? Why do you insist parents be devastated by their child's existence?"

My son doesn't have autism, but because of his lack of speech and intellectual and physical disability he needs to be supervised. He can't go out on his own, he can't make a phone call, and he sometimes needs help with personal care.

He is dependent in a Western culture that abhors dependency and idolizes individualism and self-sufficiency.

I don't believe this particular piece by Suzanne Wright strips people with autism of their value.

I do believe our culture does that quite handily, and not just with people with autism, but with any person who's not independent, anyone with a visible mark of vulnerability. You see this in our treatment of the elderly and of people with a variety of developmental and physical differences over the lifespan. You see it in our society's treatment of people with dementia.

You even see it in the awkward way that we treat people with cancer who aren't able to "conquer" it. Meanwhile, there's a massive industry catering to our collective delusion that we're not aging and creeping closer to death.

I'm aware of the many criticisms of Autism Speaks: that it doesn't have people with autism on its board; that its marketing efforts have often positioned autism as something that we need to stand in opposition to, rather than as an integral part of a person; that not enough of its funding goes to innovative supports for people living with autism.

I think those are valid.

But when a family member of a child with disability is censored in their description of their family's experience with it, I find that problematic.

Perhaps that's why this post by my friend Meriah at With A Little Moxie got under my skin. She begins by saying she's "deeply disturbed by parent bloggers writing...their particular spin on 'special needs.' On disability." (Meriah has a disability herself and is raising a child with a disability)

Meriah argues that too often we parent bloggers give mainstream readers what they "want" to hear: "They yearn for—they crave!"—she writes, "the stories of how you are so jealous of them. How life is harder for you. How challenging it is to care for your child with a disability. You throw them some fodder for some inspirational porn and they'll swallow it with one gulp."

Really? That hasn't been my experience. My experience writing about raising a child with disabilities is that most people outside the disability community would rather not hear anything about disability. That silencing is a form of our children's marginalization.

In large part, kids with disability, especially severe disability, don't exist in popular media. They're rendered invisible, and that's how most people like it. Or they're seen as a tiny "anomaly" in the child and family landscape, so foreign that parenting magazines don't routinely include them in generic photo shoots and conferences for parent bloggers run a separate stream for "special-needs parenting."

And if North American readers want to hear anything, they "want" to hear that we've made tremendous strides in mainstreaming and acceptance and that discrimination against disability is a thing of the past. They love any opportunity to pat themselves on the back.

Meriah goes on to tell us that as blogger we need to make a choice. Which do we care about more?

Sharing "a story that ultimately perpetuates the myth that disability...is this awful, fearsome, pitiable, to-be-avoided-at-all-costs thing?"

Or sharing a story that will help to weave "rich new fabric that those of us who believe in the independent living movement are struggling to weave?"

Is our experience with our kids really that black and white? Is any aspect of life, disability or not?

Meriah advises parents who are struggling with their child's disability to seek comfort in parent support groups, but not to write publicly about it. In one of her comments she says that the kind of writing we should avoid (read censor) falls into the "woe is me" approach.

Instead, when writing about disability, we should "do so with an eye on social justice and social change," which I assume means editing our stories in the hopes that these "mainstream-friendly" versions will change people's perceptions of what disability is.

To me, this sounds too much like the PR that psychiatrist advised me to undertake years ago on behalf of my infant son.

And it reminds me of how BLOOM readers sometimes respond to studies we report on that suggest disability creates extraordinary, sometimes damaging, stresses on parents and siblings. They will check off "Not helpful" in the comment box at the bottom of the post.

Which always makes me wonder: Do they expect us to burn studies that don't report the findings we "want" to hear? Would that be more helpful?

For me, being real and as truthful as possible, is always the route to go. It doesn't mean you don't strive for balance. But you don't set out to delete things—including experiences that speak to our own weaknesses as parents—that you "wish" weren't true.

Which brings me to Ellen Seidman's post on Love That Max today. Ellen struggles with the grief she still feels over her memories of discovering that her newborn son Max had suffered a stroke. Implicit in her writing is the idea that now, as he's about to turn 11, she should just "get it together" and let the grief go, expunge it, move on.

It's a pain that flairs up annually, just before her son's birthday, she says. Last year she thought about returning to the NICU to try to recreate (read "edit") her experience of it. "Surely that could help exorcise the grief demons," she writes. "I had fantasies about sneaking in to the NICU."

Fortunately, (I think!), Ellen doesn't make the pilgrimage back to the NICU. Instead, she writes: "The grief, I suspect, will always be a part of me. I need to quit struggling with why it's still there. It says nothing about my life now, my motherhood or my love for this boy, who is the best therapy of all."

I think most people—including those who know zip about disability— can understand that kind of human ambiguity.

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