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Why I chose a 'special' school for my child

By Anchel Krishna

Having a child means making lots of decisions. When you have a child with special needs, you make decisions on top of decisions.

Last year, as my husband and I prepared for our daughter, Syona, to enter junior kindergarten we had a big decision to make: Enrol Syona at our local school or in a specialized three-year program that incorporated the standard curriculum with additional supports and therapies.

The local school meant a connection to our community—to other parents and kids who live close by. The special program meant three extra years to give our daughter a head start with smaller classes and therapists and teachers looking for ways to incorporate therapy into her day-to-day activities vs just setting up supports for her.

We participated in transition meetings, made lists, weighed the pros and cons and decided to enrol Syona in the specialized program.

One of my biggest fears as Syona’s mom is that people will look at her physical disabilities and communication challenges and underestimate her abilities. I’ve seen and heard how quickly and easily that happens in the school system. I figure three years of the specialized program—and the reports from teachers and therapists it'll generate—as well as opportunities for Syona to progress and mature will prepare her to transition well to our neighbourhood school.

Syona’s had a strong start so far in the specialized program. Despite the long commute, she has a great bus driver and has made some strong relationships with the kids on her bus. This is a great way for her to start and end the day. She has a wonderful and warm classroom team who truly care for her.

There have been tears (lots of tears). But that was to be expected. Syona’s an only child who spent the summer with her grandparents and several caregivers. She does a lot of one-on-one therapy. Up until this point, almost every adult in her life has provided her with undivided attention. At school, she’s learning to be a little more independent, play by herself and with her peers and, yes, that sometimes means a few tears. I know Syona will power through them and thrive at school.

When Syona comes home from a long day and asks to go to the park and I have to say no—because there's only just enough time to have dinner and a bath before bed—I wonder if we made the right decision.

But when she comes home and tells me about going swimming, or riding an adapted bike for the first time, I know we’ve done the right thing. As parents we make the best decisions we can at any given moment. I’m looking forward to what the next three years will bring.

Anchel Krishna is manager of communications at the Children's Treatment Network. She recommends these two CTN e-bulletins on Transitions to school and Special needs and the school system. Anchel blogs about special-needs parenting at Today's Parent.

From cocoon to cold reality

By Jennifer Johannesen

When my son was very young, I was an enthusiastic participant in what I now think of as the “rehab machinery” of childhood disability. Owen had multiple severe disabilities, making him eligible for a host of supportive and therapeutic services. We tried them all, with very few of them showing discernible long-term benefit to Owen.

While each had its own goals and measurements for success, the real benefit of the therapies was the time we spent together: with Owen on my lap we would clap and sing and engage with pictures and toys and containers of beans. “Therapy” was a state of mind, a way of being a parent. While we rarely achieved any of the stated goals of these therapies, sometimes the activities were enjoyable.

I have written and spoken often of how a therapeutic life can rob a child of his childhood, steal a parent’s experience of being a parent and create unrealistic expectations of improvement and integration. I believe this is all true—the perpetuation of false hope is insidious and damaging. But that doesn’t mean it always feels that way at the time. Moments can be pleasant, comforting and connecting. And in the cocoon of the pediatric rehab community, a therapy-focused life is the norm. Everyone around the child and family is invested in this way of being.

There is little in a child’s life, even for one who is severely disabled and non-verbal, to signal what life is going to be like as an adult.

Owen died three-and-a-half years ago, at the age of 12. Despite his disabilities, his death was a surprise to all of us. He had been more healthy and content than ever. To this day, we have no official words to describe his death other than “unexplained” and “sudden.” So I never got to experience Owen as an adult. Nor did I experience the dread many of us feel as our disabled children age out of childhood.

For any other parent, a child growing up is bittersweet. It's a time of letting go, of witnessing the fruits of your labour either blossom or wither, of hoping that you didn’t say the wrong thing at the wrong time and of marvelling that maybe for once you got it right when your adolescent surprises you with something remarkable. I know this feeling—my son Angus will be 14 years old this summer. However if Owen had lived, I highly doubt I would be relishing his teenage years in the same way.

Before Owen died, I had only gotten the tiniest sense of the looming drop-off—the edge of the cliff that appears when a disabled child turns 21, when school and pediatric services end and the transition to adult services begins. Like an infinity pool that blends into the horizon, the cut-off is invisible unless you squint, even if you know for sure it’s there somewhere.
The hopes and dreams instilled into the parent of the disabled child keep her buoyed—strategies and lessons and positive thinking and most important, belief in possibility, can make the work less daunting, can even make it feel fun.

“Let’s cross that bridge when we get there” is the frequent response to the multitude of what-ifs a parent asks.

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Sometimes I close my eyes and imagine Owen as a teenager, then a young adult, then a full-fledged adult. I picture him sitting in his wheelchair much the way he used to as a child—smiling, foot jammed into the footrest in a most uncomfortable-looking way, one arm up waving stiffly for no apparent reason, the other arm flopped at his side or perhaps crooked at the elbow.

Same Owen, only bigger!

Pleasant thoughts, until I realize how difficult it would be now to get him up and down the front stairs. To bathe him and change his clothes. To get in and out of a bus. To move through the snow in his much-larger chair. To get him through the narrow doorway leading into the house. And what about other logistics, such as organizing adult funding, daily activities and programming? What about installing ceiling lifts, ramps, finding a bigger place to live? Hiring caregivers for an adult is very different than for a child. How would this all go?

So much to consider. And I haven’t even worried about the bigger societal issues yet, like access to stores and buildings, social integration, meaningful employment or contribution, personal security and safety. And the grandest worry of all: what happens to Owen after I die?

Some of these issues are highly personal and require individual remedies or responses. Accommodating an adult with disabilities within a family can be achieved as most things in a family can be achieved: with flexibility, creativity, negotiation, concession and hopefully, love and support. And frankly, for those of us who have children like Owen—children who need immense environmental modification all their life—these challenges are nothing new.

It’s the other issues that are far more worrying. And it’s only now that I see why.

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I have embarked on a video project in recent months. My general goal is to interview people who have had intense or prolonged encounters with our health-care system and find out what they think of their experiences and the decisions they made.

One of my interviewees is Bill Peace, an academic and outspoken disability rights activist. I have written about our conversations already on my blog (see Part 1 and Part 2).

Bill has exposed to me a world of disenfranchisement and loneliness I would never have seen or comprehended as the parent of a child with disabilities.

In doing so, he has shown me parts of Owen’s future I couldn’t, or wouldn’t, have anticipated, had I stayed focused on Owen’s disabilities from a rehab perspective.

Bill’s experience of disability out in the world is one that is framed by personal and group identity and civil rights. He has integrated his disabilities into his understanding of his body, his equipment, his environment and his persona. He knows where disability fits in his own life and he knows what others see when they look at him. He asserts his rights daily when he is denied access to buildings, opportunities and equitable accommodation. He has learned to fight for his right to be seen as he is and where he is.

Bill and his contemporaries had significant barriers to break through. It's because of their activism that we have accessibility acts, non-discrimination laws, curb cuts, automatic doors and public ramps. It’s because of their activism that people with disabilities can get jobs and access to services. And it’s because of their activism that when I was able to push Owen’s wheelchair up a ramp into the museum I didn’t have to think twice about how we were going to get in.

It's become clear to me that despite our differences, parents of children with disabilities and adults with disabilities should align themselves in the same direction. The people advocating for disability rights are doing the work that will hopefully serve our children and secure their future safety and comfort. Parents should be actively supporting and contributing to their work. At a minimum, we should at least be interested in how society treats adults with disabilities.

The uncomfortable truth is that many of our children will be living out their adulthoods without us. They are going to live in a world that can be hospitable or hostile, and how that pans out is largely up to us. If we spend all of our time focused on therapies and no time shaping their futures, how can we complain about poor conditions?

At the beginning of this post, I talked about my early experiences raising Owen as part of the children's rehab “machine:” a process-driven engine that takes a broken input and tries its best to fix and shape and mould it into a better output.

As parents, we spend tremendous energy participating in this because we know nothing better, we’re shown nothing different. “So this is how it’s done,” we think. And then we do more.

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There are critical pieces missing from this machinery that would serve parents and young adults well. If we are truly interested in preparing young people and families for adulthood, we should be teaching advocacy skills and disability rights. We should be supporting people to become comfortable with their unconventional identities (parents and children alike). We should learn to recognize and respond to discrimination. We should understand how legislation and politics affect people with disabilities. And we should work with disability rights activists, because we have common interests.

In all of my years in the pediatric rehab setting, I was never once introduced to an adult with disabilities. Only occasionally was I introduced to another parent who was at least a decade or two beyond my parenting stage (and those introductions were only as personal connections, not as mentors and advisors).

It's as though the children's rehab machine wants to shield us from what lies beyond its youthful boundaries, because maybe, at some level, it knows the ways in which it's failing.

Jennifer Johannesen is the author of No Ordinary Boy: The Life and Death of Owen Turney. Follow Jennifer on her blog.

When nothing can mean everything

Check out this great piece on Motherlode, which seems written in response to some of the discussion we had to the posts Under the hero's cape and Outcomes: How to let go.

Here's how it begins:

"I would do anything to help my child." Who hasn't said that and followed up their words with actions? But the parents of special needs children get to prove it on what seems to be a daily basis, since there is always a new therapy, medication, school or tutoring option being presented to us. And we often leap before we look. Even when a program doesn't sound quite right, hey, like the lottery, you never know. What if this one thing you choose not to try is "it?" Aside from fearing that, we get afraid of being branded as the mother who doesn't care enough to go through the wringer as well as her life savings.

The window

Today we have a guest blog from Marcela De Vivo, mom to Nathan, 4, pictured above. In Marcela's 36th week of pregnancy, Nathan was diagnosed with severe holoprosencephaly, a malformation of the forebrain. His parents were told his odds of surviving birth were one in 20 million. If he did, doctors said he would be a 'vegetable' and not have a meaningful life. I read Marcela's blog, and one theme that kept popping up was the struggle between wanting to 'fix' our kids through therapy and accepting them as they are. I am delighted that Marcela has chosen to elaborate on that topic. It's one that's dear to my heart. Thank you Marcela!

The window
By Marcela De Vivo

When my son Nathan survived birth, I was told I had a very small window for promoting his development. That window – propped open a few inches – could improve the quality of his life; help him maximize what little brain he has; and teach his brain to rewire itself and function, at least a little.

Nathan was given a three per cent chance of survival at birth. Then he was given a three per cent chance of living past his first year. He beat those odds. The least I could do, I thought, was keep an eye on that window for moving his development forward. The brain is most plastic and malleable during the first three to five years of life, I was told. I had those years to help Nathan’s brain rewire itself so he could learn to walk, talk and hold up his head.

The first year we followed the conventional route. We did as we were told. He had physical therapy and occupational therapy and developmental therapy. We stretched him and did the homework given to us by the therapists.

The only problem was that by the end of that year, Nathan hadn't gained any functional skills. I saw our window of opportunity begin to close. He’s not receiving enough hours of therapy, I thought. That’s why he’s not improving. So I found a pro-bono advocacy group to help me approach our regional, early-intervention services and we asked for more hours – more, more, more! More is better, right? So more we got. By the time Nathan was 18 months old he was receiving about 15 hours of therapy each week.

I kept my eye fixed on that window and we worked hard on his rehabilitation. He’s already a miracle, I told myself. He will make more miracles happen.

But by age two Nathan still hadn't mastered any functional skills. I thought I had better pick up the pace. Everything I knew told me that it was simple anatomy: The brain rewires itself, we have to keep going.

Maybe it’s not the quantity, I thought, but the quality of therapies that make the difference. Maybe we needed to find more effective alternative therapies. So I began the search: Stem cells; G-therapy; IAHP; suit therapy; Tomatis listening training; hyperbaric oxygen therapy. I spoke to moms all over the world. I researched late into the night and chose a few therapies that we started intensively.

And all the while, my eyes were trained on that window. We would make it through, I told myself. Nathan might be a late bloomer, but I would pull him – by the hair if I had to – through.

Then Nathan turned three and he still hadn’t progressed. His head and trunk were as floppy as ever. The muscles in his arms, hands and legs continued to be tight. I was missing something, I thought. I had to be missing something.

Perhaps we simply hadn’t done any therapies intensely enough for a sustained period of time. Perhaps I just hadn’t found the right therapy. I heard about a type of physical therapy called Medek. We packed our bags and went to South America to see Ramon Cuevas, who invented Medek. We rented an apartment and lived in Santiago, Chile for three months. Nathan saw Ramon twice a day, every day, for three months. Medek had gotten so many kids to walk. This was it, I thought. This was the one. I could feel it in my bones.

Except my bones were wrong. My bones didn’t anticipate that three months of therapy with Ramon Cuevas wouldn’t be enough. Pregnant and defeated, we headed for home. Our small window was now barely open a crack.

But there was still a sliver of light. Where there’s a sliver, there’s hope, I thought. I figured it was a matter of the combination of therapies. I realized that maybe not one therapy could address all of Nathan’s needs, so I proceeded to assemble the perfect combination of alternative therapies: Feldenkrais; Advanced Biomechanical Rehabilitation; Cueves Medek Exercises; Cold Laser Reflex Integration; G-therapy; Biomedical Interventions. This was it. This was what I’d missed all along: We weren’t doing the right therapies in the correct combination for a sustained period of time.

Recently Nathan turned four. I took stock and had to acknowledge that Nathan hadn't made functional gains. He has learned to move in a walker. He is in the early stages of learning to use a communication device. But still his head is floppy and his trunk is floppy. He can’t sit up or use his arms or manipulate his hands.

And I wonder. Is it time? Is it time to accept that Nathan is just the way he is? Is it time to accept that Nathan simply is the way he has to be? And if I accept him just the way he is, do we continue with therapies? Why all the money and effort if he isn’t going to improve?

And then one day it hit me that maybe that window of opportunity wasn’t Nathan’s – maybe it was mine.

Nathan is fine. His soul is perfect. His heart is gold. He is a healthy, happy child with physical limitations.

Maybe the window we have to crawl through requires me to love and accept my son – just the way he is. Maybe the opportunity is for me to change my paradigms and realize what’s truly important in life: to live in the present; to appreciate what I have; to express gratitude towards others; to forget about petty problems; and to focus on loving and enjoying the people in my life.

I don’t know for sure. But what I do know is that today, right now, Nathan is healthy and happy. And I – I – am learning to push myself through that window.

Mama and Dad

Why I chose a 'special' school for my child

From cocoon to cold reality

When nothing can mean everything

The window

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