The absence of normal 'frees us'

I have eagerly anticipated posting this piece by The Boy in the Moon author Ian Brown (with son Walker, above). It is a brilliant essay that speaks to a central question for many parents of children with complex disabilities: What is the value of my child's life when he or she will not achieve conventional success? Ian, a veteran feature writer at The Globe and Mail, wrote this piece for the summer issue of BLOOM. It reminds me of many things my son has taught me, but which are sometimes hard to keep top of heart and mind in our culture. The photo was taken by Globe photographer Peter Power. I can't wait to hear what you think of it! Louise

The absence of normal 'frees us'
By Ian Brown

Without question the most common reaction people have, when they find out I have a seriously disabled son, is “I don’t know how you do it.”

It’s an interesting reaction, because in many ways, the act of physically caring for a boy like Walker (photo above) is the easy part. Walker is 14, looks about 10, and has the mental function of someone who is about two or three. It looks like he always will. He can’t speak, and because he can’t speak, I don’t know how well he sees or hears, or why he hits his head again and again if I let him, or where he’s in pain. He can’t swallow, so he has to be fed with a tube, and he can’t figure out the routine of going to the bathroom, so he has to wear a diaper. But those are easy problems to fix, albeit time consuming and sometimes a little dreary: a diaper is a diaper, and sometimes it is full and needs to be changed.

What I found more upsetting, practically from the day Walker was born, was a bigger and more unknowable question: did he have an inner life?  Did he have any intentions, and therefore did his life have any purpose, any meaning?

That’s a hard question for any of us to answer, but it’s especially hard to answer for a boy who cannot speak or reason, and whose care consumes countless resources and many, many hours of human effort. Because I did that calculation too, when Walkie was an infant:  if he lives at 10 per cent of human capacity,  and if the care of him reduces my wife and I to 30 per cent of our human capacity, and if my daughter Hayley is set back 30 per cent, because of him—well, add those up, and you have two and a half lives spent to sustain the so-called life of one broken boy. Is that worth it?

I couldn’t tell, and so I spent a lot of time looking for some way of justifying his life, lived as it is in semi-darkness. I found proof again and again, if only I remembered to look in the right places. Walker’s life is not a success measured on any conventional scale of human success: he is never going to earn his living, never mind an income big enough to buy a fancy retirement home for his Mum and Dad; he is not going to go to Harvard or anywhere else that will make his parents proud; he is never going to invent a faster, easier way for people to spend money on the internet. The value of his life, if it has a value, will have to reside in his life, per se, in the sheer fact of his existence.

Gradually, I have begun to realize that he has a way of intensifying a moment, a way of making me take the time to look at it again, more closely, without an interfering agenda. He slows things down, and in the technology-mad world most of us scurry through, that is a valuable talent, even if it is not intentional. When his sister deigns to read to him (she has a busy life of her own) and his face lights up like a beacon, he forces me to pay attention to what is making him engage so intensely: his gorgeous sister, holding this weird contraption we call a book, chanting a story in the ancient rhythms human beings have used to make each other feel things since we first started telling stories. I don’t think he understands a single word, but he understands the importance of that hallowed ritual, and his pleasure is so intense and unfiltered and therefore contagious that I have no choice but to remember how important the act of sharing a story is—fundamental, you might say, to human existence.

When I walk down the street with him, pushing his chair with my elbows so I can lean forward and talk into his ear, out loud, about the sights we behold on the boulevard before us—the return of the white miniskirt, for instance, or the popularity of the clunky Dutch bike in Toronto these days—he goes into thrills of glee. He can’t contribute to the conversation, but he apparently loves to be on the receiving end of one, to be thought of as someone who can listen and appreciate the fact that two people are talking about the world around them. I often forget how important that transaction is. But not when I am with him, because he will not let me forget it.

One of the things Walker likes to do when he’s with me is sweep anything on the table in front of me onto the floor. He knows I’m always watching for this act of subversion, and he waits and waits and waits until I am distracted for even a fraction of a second, and then he makes his move. It’s as if he’s saying, really, how important is that newspaper/glass of wine/BlackBerry? Then he throws his head back and laughs.

For a long time I worried this was evidence that he was a sociopath, that I’d end up one day nattering to him through the Plexiglas of the visiting room at Kingston penitentiary. I must have watched him do it 1,000 times, to my great dismay, before I stopped worrying about why he wasn’t behaving like a normal boy, and began to try to understand him as he was, a boy with an unusual and persistent habit.

Eventually I figured out that Walker knows he is less capable than others (it makes him feel lonely and sad), and that the table clearings are a way for him to show me, once in a while, that he can trick me. At those moments, if only for a moment, we are suddenly equals. I imagine this is a bit of a thrill for him, and even a liberation. But it is an especially great liberation for me, because it allows me to be his equal, in a context of our own making. Yes, smarty pants, I can say in all honesty:  you got me that time. And I can be happy for his achievement. We can relate to each other not as we are supposed to, not as others insist we should, but as we can, in a way that makes that moment ours and ours alone. That is freedom—not only of the mind, but of the heart.  It is one of the deepest and most unalloyed freedoms I have ever felt.

Walker gives me the opportunity to observe another human being, without self-consciousness: that is worth his weight in gold. (About 95 pounds worth, these days.) I get to love him as he is, because he gives me no choice, and so we can be who we are, weary dad and broken boy, without alteration or apology, in the here and now. He is the antidote to the stark emptiness of the survival of the fittest. He may not be much on the evolutionary scale—“a deleterious effect of nature,” a geneticist once called him—but in my experience he has few peers as a route to developing what Darwin himself in The Descent of Man called the evolutionary advantages of “the social instincts . . . love, and the distinct emotion of sympathy.”

You can say, of course, how can you know any of this? All this value that you imagine resides in Walker’s company—don’t you worry that you’re just imagining it? And the answer is, yes, of course, I may be imagining it. I may be dreaming. But the average father of the most normal children doesn’t know a lot of the time if he and his sons and daughters aren’t making up or imagining the bond between them. Every human relationship exists, in one way or another, on the level of illusion. Only a fool, or someone intent on disappointment, pretends otherwise. At least Walker and I don’t compound that confusion with words.

It’s the very lack of so-called normal expectations, the absence of the possibility that we can ever “achieve” much or even disappoint each other, that frees us to be ourselves with each other, to remember who we are and what actually matters, as opposed to what it supposed to matter. That is a great, great gift—and I say that as someone who hates to use the words “disability” and “gift” in the same sentence.

I am beginning to realize that the world I occupy with Walker, my intellectually disabled son, is almost by definition anti-establishment; a world where social orthodoxy and conventional wisdom and received opinions have very little value. That turns out to be a good vantage point.

My only regret is that it has taken me 15 years to see my way to this conclusion—15 years to see through the exhausting demands of day-to-day care of a boy like Walker, to a redeeming value of his life. I can’t help but wonder why it took so long, or why I had to conduct the search on my own. I also wonder why the medical profession, and the care profession in general, don’t help parents toward these insights—as the church might have in the past.

But this is a scientific age. Walker would not be alive today were it not for brave and brilliant medical technology. Medicine allows these children, who would not survive on their own, to live, thus creating what amounts to a new strain, a new genre, of human being. But once they leave the hospital, the parents of a disabled child are on their own (especially if the disability is one no one knows much about, and there are lots of those). It’s not just the punishing and seemingly endless routine that makes 24-hour-care of the disabled onerous and crushing: the absence of any apparent meaning to the work, of hope and purpose, is equally daunting.

Could the medical and caring professions make a contribution here, by teaching parents and caregivers how to measure success in less obvious and less quantifiable but equally important ways? I know it’s not their natural purview: they prefer results, and replicable ones at that. Even so, a few far-seeing hospitals (Toronto’s Hospital for Sick Children, for one) and some medical specialties (genetic counselling and developmental pediatrics) have begun to introduce the conversation into their training. But it should be standard practice, for the sake of the doctors as much as the parents.

The value of the human spirit, even at its subtlest and most obscure, is a question the whole world always needs to question, and answer.

The Boy in the Moon has won three prestigious Canadian awards and Ian Brown's reporting and writing have won more than a dozen national magazine and newspaper awards.

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Technology in school

Cindy Matthews is a vice-principal of special education programs in Southwestern Ontario and writes as a freelancer for a variety of educational magazines. She's written for BLOOM, and now she's looking for some input from our families for an article she's writing for the Special Needs Opportunity Window (SNOW).

I have been asked by SNOW to do an article on the use of technology in schools by mid August. I would like to get some background from parents and students who are interested in e-mailing me at cindy_matthews@wrdsb.on.ca. I'd love to hear your answers to the following!

For students:

What grade are you in? What school board do you attend school in?

Describe some computer and other technology you used while a student.

What kind of technology in school was of benefit to you and how?

What kinds of technology did the teachers use and how was it beneficial (or not beneficial)? Did you, as a student with special needs, ever feel learning was not accessible? What might you have changed if you could?

For parents:

What technology (computer and other) does your child need?

Is the technology accessible at the school? What have been barriers to learning, if any?

What are some emerging technologies you are aware of that your child might benefit from?

Thanks!

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I don't like explaining disability

A wonderful social worker here at Holland Bloorview sent me a list of commonly asked questions by parents. 'How to explain your child's disability' was at the top of the list.

This made me wince a bit because when my son was younger I was more proactive in explaining his differences -- both to him and to others. But somehow I seem to have lost my touch.

Because of Ben's communication problems I've never been forced to answer questions because he asks them. When I do bring up the topic it's intentional and from my perspective. I probably don't talk about some of the harder aspects of his condition in a way I would if he was to question me directly.

I honestly don't know how much he thinks about his differences or whether he just accepts that he is different. The only recent question I remember is Ben asking when Darcy and I grew tall. He has severe short stature.

When Ben was young I explained his differences in a simple and functional way. For example 'he knows what he wants to say but his muscles won't listen to him.' Or 'he doesn't grow the way other kids grow.' Or 'he uses sign language to talk.' Or 'that's just the way his ears were when he was born.'

I had a more sophisticated explanation ready for the later years. I would explain that our genes are like an alphabet that when put into words and sentences tells the body how to work. But Ben is missing a couple of letters. So his body isn't getting the right instructions.

I've only used this explanation once, when one of my daughters had questions. But in general my other kids don't ask questions about Ben. And sometimes I think that's because they know it's still a painful subject for me.

I know it's my job to educate and reassure them. But sometimes I just don't have it in me to be upbeat and okay with his syndrome.

There's also a part of me that sees Ben as 'different' but not disabled and somehow lacking, which seems to be the common public understanding of the word disability. So there's a part of me that bristles against putting the focus on his disabilities when talking with him, his siblings or others. I’d much rather talk about how many fish he caught at camp or how his being fills us up so full that when he’s away our chests hurt. The first couple of days, we kept thinking we could hear him and had to remind ourselves that no, he was gone.

And perhaps there is even a part of me that wants to deny some of his disabilities. For example his intellectual disability. Maybe there's a part of me that believes that if I just don't talk about it, it isn't real.

Ben wasn't diagnosed with an intellectual disability until he was 13. He is hard to test, and the first thing the psychologist said when she finished was: "He doesn't have mental retardation. He has the ability to reason." Then he scored worse on the tests than she expected.

When we were preparing for his life plan day, one of the descriptors he chose to share was that he was smart (in addition to gentle and funny). And he is, in an unconventional way.

I was reminded of how I really don't like explaining Ben's disabilities the other day when I met with Gary Bunch, a scholar in inclusion at York University. Gary agreed to meet with me to talk about Ben's school placement next year.

Ben is not going back to his segregated school. He is going to a regular high school that has a unit for students who are deaf and hard of hearing. These students don't have intellectual or physical disabilities. They are quite typical other than their hearing loss. They have some classes in the unit and go with interpreters into regular classes as well. Ben wouldn't normally be placed in this program because our board groups children in special-ed by intelligence (I wonder if I’d developed my alopecia young if I’d have been placed in a class for only bald kids!).

The board is allowing this placement because I pushed for it and involved our school trustee and superintendents.

I have a lot of concerns about how Ben will do, but I know that I don't want him to live his entire life in a segregated setting and now is the time to prepare him for a larger future. As I spoke with Gary about the transition he reminded me of how important it will be for me to educate the teachers and students about Ben.
In the past I've never had to explain that it's hard for Ben to learn.

We never told Ben that he had an intellectual disability when he was diagnosed. I realize this probably goes against parenting and disability ‘best practices’ but a part of me didn't want to tell him that it's so much harder for him to learn. I was sick of the multiple health and physical disabilities he was already dealing with. Every time we got a new diagnosis, it felt like a part of him was being taken away. I didn't want to take anything else from him.

For some reason, talking about how his muscles don't work properly is so much easier than saying that his brain doesn't work properly. I don't want to tell him that, much less describe it to a class of high school students.

But I guess it's a part of coming to terms with my son’s syndrome, something I thought I had already done so long ago. It surprises me when it sneaks up on me, the grief and resistance that is still there after all these years.

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Work and severe disabilities

A study to be published in the August issue of Intellectual & Developmental Disabilities looks at factors associated with paid work during high school for students with severe disabilities. The study is covered in an article on Suite 101.

Some of the findings:

About 28 per cent of 1,510 students had paid work experience.
Of those, 31 per cent had an intellectual disability, 17 per cent had multiple disabilities and 11 per cent had autism.
Odds that students had paid work increased with age.
Students with intellectual disability had almost four times the odds of working than those with autism.
Good communication and independent self-care showed three-fold odds over those with less abilities.
Ability to get to places outside the home was a strong factor for paid work.
Ability to understand others and social skills were not significantly associated with paid work.

Parent expectations are strong predictors of success in finding work for these students. "Students whose parents expected them to eventually become self-supporting had significantly increased odds of having paid work compared to students whose parents did not expect them" to do so. Students who had regular chores were more likely to go on to paid work.

The Suite 101 article includes tips for parents. Louise

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At the barre

I came across this cool photo by Jamie MacDonald of an accessible ballet class we wrote about last year: Katie's ballet dream comes true.

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Mock my pants, not my sister

Of interest to those of you who read about the GQ story that refers to 'Style Down Syndrome' in slamming Boston as the worst-dressed in the nation.

Mock my pants, not my sister

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Wordless

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Ben's story

This is a story that D'Arcy wrote about Ben (above, in a much earlier photo) and read at his Life Plan day. It's a beautiful piece because he totally pegs Ben when he calls him a serial giggler. When I first read it, I was going to 'edit' it, as D'Arcy's take on some events is very different from mine. But this is D'Arcy's story as much as Ben's, so I didn't touch it. Louise

Ben's story
By D'Arcy McGovern

Ben is a giggler. A serial giggler. No one knows when a fit of the giggles will catch him; at the dinner table; in the pool, gazing out the car window; late at night curled up in bed.

"What's so funny?!" I always ask. But he never tells me. Of all the riddles that surround Ben, questions marks and mysteries that blanket him like a fog, I'd love to know the answer to that.

Because Ben, viewed from the perspective of most of us, might have a lot to be unhappy about.

Ben has Langer-Giedion Syndrome, a rare genetic disorder. That doesn't mean much to most people, but the result is pretty easy to see. Ben is small, about the size of a six year old, though he just turned 17. He cannot speak. Instead he uses some signs, gestures, sounds. "Um-ah" is Dad. "Ma!" is no. He has weak muscles and bones that are covered with bumps that can sometimes grow so large as to be painful. Two of those bumps, on his hip and knee, had to be removed last year because they were making it hard for him to walk. Ben still limps, but he's back walking again and uses his walker and wheelchair less and less.

Movement has been a struggle for Ben for a long time. At age two, Ben was still crawling long after most kids are up and running. He went to many physiotherapists. We built tiny wooden boxes and forced his legs and feet into the proper positions to stand, climb and walk. There were hundreds of hours of these sessions when he cried -- no, screamed -- from beginning to end. But at long last, he stood and walked.

He went to specialists in Detroit, in New York City, in Syracuse who tried to understand why he couldn't talk. They poked and prodded, made him wait, asked endless questions, tried pills, potions, x-rays and surgery. They advised more therapy and when one therapy proved useless, the next was tried, and the next, and the next with Ben coaxed, begged, and pushed into endless rounds of repetition, tears and frustration. There were weeks when doctors and therapists appointments came every day.

And Ben got sick. Every winter we had season's tickets to the doctor's office. Ear infections. Because of the odd internal structure of Ben's ears, he was very much more susceptible to infections, with the fluid pooling up behind his eardrums, causing pain and reducing his hearing. He had eight sets of tubes surgically inserted in his ears to help drain the puss, each working for a short while before blocking up and being pushed out by the building tidal wave of goo.

Ben stopped growing. He was given growth hormones -- daily painful needles for months -- to no effect. He grew thin. A high-fat diet pumped cream and butter into his system. And then a G-tube -- a tube cut into his stomach, with liquid nutrients forced into him to try to get his little body to grow. The tube in his stomach had to be changed frequently, the old one yanked from his belly while he was held down screaming, a new one jabbed in and inflated.

Tears. Tears all 'round.

At nursery school, Ben mostly played alone. The nannies, the moms, the other kids were unfailingly polite. But Ben couldn't communicate, and the other kids, jabbering away a mile a minute but met with stoney silence, slipped away where Ben couldn't follow.

Kindergarten at one school ended abruptly after Ben was found bound to a chair -- punishment for some minor discretion.

And then Ben was touched with a fairy sprinkling of luck. He found an alternative grade school -- Alpha -- filled with eager, compassionate kids and teachers, who brought Ben into their family. And Ben experienced the miracle of friendship -- real friends to play with, to go to birthday parties, to swap toys, to share their lives.

Ben started to read, comic books and picture books, gazing at them for hours, going back to the same ones over and over. And computer games, a source of endless mirth and often the spark for an explosion of giggles. He had electronic friends: Reader Rabbit, Putt Putt, Freddy Fish, Pajama Sam and printed ones, Geronimo Stilton and Captain Underpants. The real world Ben found so hard to relate to came a little closer through the virtual world of books and games.

I have stood amazed as Ben has made his way through the world, stunned that so much pain, so little return for so much effort, has left him not bitter and disconnected, but happy, open and even at times serene. I have said more than once that Ben is like a balm for my soul. On my worst days, I can come home and melt into his little arms, swallowed up by calm. Ben bears no grudges, makes no judgments, accepts all faults. And he is always ready for a good laugh.

So, I'd like to know why Ben giggles. But not because I need an answer. I just want to join in the fun.

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He's on a roll

Ben caught more than 6 fish today!

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Too disabled? Not disabled enough?

It bothers me when criteria for services for kids with disabilities is so restrictive.

Recently we were referred to the local agency providing service for youth with intellectual disabilities. We wanted a consultation with a behaviour management person to see if we could reduce Ben's tendency to pick at scabs when anxious.

I was asked to send a copy of Ben's most recent psychological report. I was surprised when the intake person called back to say that they wanted to look at previous reports because Ben's scores might be too high to be eligible for their service.

The intake person said the agency only served youth with moderate to severe intellectual disabilities that place them below the 1st percentile. However, among the disability community, this organization is known as serving youth with intellectual disabilities period. When I asked my colleagues if they knew this provider only served a segment of this population, they did not.

I didn't have previous reports handy, so I had to contact the psychologist and sign a release consent to get copies. If I didn't work at Holland Bloorview, I would have had to make a trip to pick them up. Tomorrow my husband will take them into work to fax them.

Parents don't have time to play these games. My son requires a service and was referred to this agency by his developmental pediatrician.

It's amazing how many programs are closed to youth because they are either "too disabled" or not "disabled enough."

I guess we will wait while the agency's psychologist pores over these lengthy reports to see if he or she can find a way to exclude my son.

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The boy is back

This just in from Camp Kennebec on day 2:

Ben slept fantastic last night. The storm was brutal but we got through it. Ben and I just got back from fishing. He caught 4 fish and we saw a huge turtle. Was amazing. 

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Disability and quality of life

I contacted Dr. Larry Fenton, a pediatric palliative care doctor in South Dakota who had an invited comment published in the American Journal of Medical Genetics this month. He said he would "be honoured" to see it reprinted here.

We have talked before about quality-of-life measures that are based on how "most people" would rate life with a severe disability with life without: Is life with disability half as good as life without?

"How easy it is to assume we know what a good quality of life is for anyone other than ourselves," Dr. Fenton writes. See below. Louise

Trisomy 13 and 18 and quality of life: Treading ‘‘softly’’

Lawrence J. Fenton
Pediatric Palliative Care Sanford Children’s Hospital, Sanford School of Medicine, University of South Dakota, Sioux Falls, South Dakota
July 2011

Not too long ago I was privileged to speak at an annual international conference of the Support Organization For Trisomy 18, 13 and Related Disorders (SOFT). I learned much more than I taught. There were over 200 families there. Approximately half of the families were bereaved parents of a child with Trisomy 13 or 18. But then there was the other half, the half with surviving children with a trisomy. The oldest child I met was a young lady with trisomy 18 who was celebrating her 30th birthday. She was beautiful. Well dressed and impeccably groomed. She was non-ambulatory, nonverbal, and had a gastrostomy. But she surely knew her parents, she smiled at them and touched them with affection. There were many others with a wide distribution of ages. I met 16-year-old Karah and her siblings 11-year-old Olivia and 9-year-old Spencer. Karah’s smile as she hugs her siblings is contagious. Olivia had written a wonderful tribute to Karah in which she wished that others could see Karah’s heart in the same way she did. She loved her deeply and wanted others to do the same. I met a family with an adorable 3-year-old with trisomy 13. She was walking and squealing and smiling and relating to her parents. Must be a mosaic I thought but then her physician mom told me that chromosomes were done at Boston Children’s and she was a full trisomy. I saw a room full of families with children with trisomies and yes, they had profound disabilities. But the room was filled with smiles and laughter and all of the sounds of people enjoying one another. A room full of longterm survivors. After nearly 40 years as a neonatologist and now several years as a pediatric palliative care physician, I considered long-term trisomy survivors a statistical rarity. Forget the statistics and the rarity. This was a room full of families having fun with their children. Each one was different, each with a distinct personality, each with the dignity of full personhood. I do not want to minimize the struggles these families go through. One mom said that most were just inches away from losing it completely on many days and that sometimes it was just hard to get out of bed to face changing a diaper on her 20-year-old. But, these parents would not have it any other way.

I learned very quickly that the three words these families never wanted to hear from physicians and others who provide care were ‘‘Quality of Life.’’ I was somewhat taken aback because as a palliative care physician I frequently use these words to describe what we do in terms of helping families cope, helping children deal with pain and other symptoms so that life may be as good as it can be up to and including the time of dying. Good palliative care is much more about living than dying. Apparently for these families, the phrase ‘‘quality of life’’ had been used by the medical establishment in judgmental ways perhaps in times of giving advice with regard to treatment or just general commentary. A remark soon after birth that sounds like, ‘‘I’m afraid your child won’t have a very good quality of life’’ may seem innocent but it is not. How easy it is to assume we know what a good quality of life is for anyone other than ourselves. We assess the burdens of care, the impact on siblings, the impact on parental relationships, the impact on finances and the utilization of resources. We perform ethical analyses assuming we truly understand how to apply beneficence or maleficence to a child with trisomy 18 or 13 or any other disorder in which there may be profound disability. As if the child can tell us what he or she is feeling. But we can do our best to assess and treat pain and discomfort. Smiles and laughter need no score pad. We know what they mean. The advice we give may often be centered around our personal notions about quality of life. As a profession we are far from all being on the same page with such advice as was recently well described by Janvier et al. [2011] in an ethical case discussion about a child with trisomy 18. They point out the absence of data on outcome of procedures done on children with trisomy 18.

I write this not to advocate for any particular point of view except to advocate for a willingness to do whatever it takes, however long it takes, however many consults and team members it takes to fully inform and understand the goals, values and aspirations parents may have for their children. Once we have done that we need to honor the parents by helping them achieve those goals whether it is comfort care alone, a full court press or something in between. Regardless of the choices of the family, they deserve our respect, our affirmation, our support, and part of our own humanity as we try to do our part to make their lives and the lives of their children as good as can be. Is not the privilege of doing that exactly why we are here?

REFERENCE
Janvier A, Okah F, Farlow B, Lantos JD. 2011. An Infant with Trisomy 18 and a Ventricular Septal Defect. Pediatrics 127:1–6.

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When 24-7 caregiving destroys a marriage

The following piece was written in response to our recent posts on the mental-health impacts of parenting kids with disabilities. This story was submitted by a blogger who is known to many of you for her wisdom, compassion and humour. And now -- courage. She wonders if there are others out there like her.

When 24-7 caregiving destroys a marriage
How one woman's world gradually shrank away

I never imagined it could happen to me.

I am educated, self-reliant, and was nurtured in a secure, loving home. I ended up, however, in a psychologically-abusive relationship. Psychological abuse leaves the victim blaming herself and questioning her own perceptions over the behaviour of the abusive partner.

It started when my child had a catastrophic illness that left her with severe disabilities.

Over an 11-year period, I slowly but surely abandoned everything -- family, job, friends -- to care for my child. My spouse could not, or would not, ever do it on his own.

First he insisted that help was required from staff or myself. Then the rule became that there must be two people at home at all times -- staff and myself, or spouse and staff. And when there was no staff, it had to be me and him.

He never went back to work and I wasn't allowed to.

I let go of everything that stressed him out. And stressed he was, with Post Traumatic Stress Disorder. But it was never enough. I could not open a window or it would cause allergies. I could not make a morning coffee until he was watching our child a foot away from the bed.

I could not go out unless I had permission and there was 'enough coverage.' As a result, I haven't been alone in the house for at least nine years. But I believed it was for 'the cause' -- our child -- and that my spouse was an exceptional man for sacrificing so much for her.

It was our child he used to hold me emotionally hostage.

He believed it was only our unwavering hyper-vigilance and constant focus on 'improvement' which kept her alive and well. No staff was good enough, no doctor, no therapist, no school. As my world got smaller, so did my child's. We lived in a room, watching constantly for 'trouble.'

It was through blogging that I came to understand what was happening to me. I became acquainted with a whole world of disability, and caregivers of the severely disabled. I learned how they lived and became acutely aware that something was very wrong in my world.

I got counselling, often in secret. Counselling helps the abused step back cognitively and process the situation, so that she can understand the nature of the relationship and the abuse. It also provides tools to help the victim develop better boundaries so that she can extricate herself from the relationship.

It took me over a year to ask for a divorce. Interestingly, it was my spouse's insistence that we get couple's counselling that reinforced my decision. I became aware of my issues, was able to see where I was off-track in my perceptions, and learned what to do to move ahead. My spouse was shocked that the therapist didn't get me to 'see the error' of my ways.

Now, as I finally plan to leave, child in tow, my partner says I am selfish and am causing our daughter to suffer more, deteriorate and even die.

I will move ahead regardless.

I am on my way out. There is a long road ahead. I will have to deal with my spouse for as long as I have 'our' child. But I have the tools and the growing self-confidence to speak up and move forward in life. In the end, it will benefit not only me, but my beautiful disabled child, who, along with me, will gain a new life.

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Kumon man

Ben has never been able to write because of weakness in his hands.

I started him on Kumon reading but figured I would always have to fill the letter blanks in. It's hard for him, but he's doing it now. And he'll even do a whole book by himself -- quite miraculous considering the degree of his attention problems.

And he's able to identify most words when asked "show me ___________"

I know writing is supposed to aid reading so I'm very happy about this.

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What about me?

I knew the post on depression and anxiety would strike a chord with readers.

A week ago, while we were in Chicago, I had a bit of an epiphany. Not only was I filled with angst about my son’s future, grief that he won’t follow the conventional path, and anger at the injustice of it all, but I was also worried about me.

Yes, I want my son to have a good and rich life. But I want to have a life too.

I know that’s not something we parents acknowledge often. It seems awfully selfish. Guilt prevents us from talking about it. But when a child won’t be independent as an adult, it’s hard not to picture your life subsumed by their care.

“My son is turning 30 next week and I’m having a difficult time with it,” DeeAnn said in a comment. “While other parents my age are becoming empty nesters, I am still dealing with a ‘child’ who is completely dependent on me.”

Much of my day and head space is still spent caring and advocating for Ben. There’s a school lunch to be made, help with dressing and medicine and leg stretches in the morning. After work, I sit with him to do Kumon or send an e-mail or read Harry Potter or get him to answer questions with one of his Proloquo pages – which I design by downloading photos and creating the grids.

There are numerous e-mails and calls related to school advocacy (more on that in an upcoming post) and funding. I have hired Plan Toronto to help me develop Ben’s support network.

And now we’re exploring a voice device for him. I know from the ones we’ve abandoned in the past the tremendous amount of time that goes into setting something up. Of course it would all be worth it if there was an intuitive system that was easy to use, but I haven’t seen one like that yet.

There is lifting him in and out of the bath, or carrying him up the stairs on my back (even though I’m not supposed to, and he can walk now). Washing his hair.

I still have to close the bathroom door for him because he forgets, and remind him to wash his hands and his face, and clean his eyeglasses and give him his hearing aids to put in. I still have to change said hearing aids' batteries.

He can’t go outside on his own or travel the TTC, or use the phone. He can't be left on his own.

He goes to camp for a month this Sunday, and while I know I need the break, I know I will miss him terribly. And worry about him and whether the worker with him can multi-task the myriad of things that need to be managed to get him through the day.

But till age 21, he will have school during the day which gives us a structured break. After 21, I feel that I have to magically whip up seven meaningful days a week – with things like volunteer work, recreation, continous learning and maybe even some kind of job (or business – that’s what many parents do, create a full-fledged business that their child can work in or own).

I’m trying to rein myself in and just focus on the next year, while doing some long-term planning (such as the support network).

But in Chicago, I couldn’t help feeling that when my child is an adult, I want some kind of natural separation, some space for myself.

I think it’s one thing to create an adult life for your child with disabilities. But it’s quite another to do that AND have your own interests, activities and private time. To follow your own dreams.

The pic above is of me on a Bixi bike in downtown Toronto. A couple of months ago D'Arcy and I had a worker stay over for the night and we went to a hotel. We spent the afternoon riding along Queen St. W. on these bikes and I felt like a carefree teenager (well, if you know me, I've never been quite 'carefree!')

I'd love to hear from parents who have struck a good balance between caring for themselves and caring for an adult child with disabilities. Louise

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Get your cameras ready

This contest is open to Canadians. Read more at filmpossible.

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Your declaration of interdependence

This is a piece for parents of children with intellectual disabilities, but is relevant to all parents.

Your declaration of interdependence

It's written by Caroline McGraw. Caroline is program director at a L'Arche in Washington, DC, and has a younger brother, Willie, who has autism. L'Arche is a non-profit, faith-based organization that creates homes where people with and without intellectual disabilities share life together. Caroline also does motivational coaching and support planning for caregivers and parents.

I thought this piece was relevant given our discussion about mental-health impacts of high-needs parenting. Louise

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High-needs parenting: It takes a mental toll

I recently posted about a study of dads of young adults with autism who had high rates of clinical depression and were pessimistic about their child's future: Dads and depression. I was surprised that we didn't get a single comment.

Last night I was reading some blogs I follow and was struck by these two parents who recount the psychological toll of parenting a child (or children) with complex needs:

Separation. Anxiety.

I've lived in fear for the past 3 years (this is an amazing blog by one of Holland Bloorview's family leaders, Cheryl Peters).

It seems that depression and anxiety are part of the package of raising a child with complex disabilities. One study of moms of youth with autism likened their stress level to that of combat soldiers.

I think the mental-health impact of raising children with disabilities in our culture is a bit taboo and minimized.

What do you think? Louise

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Choosing Carter's voice device

Today we have a guest post from Stacey Moffat, a teacher, writer and mother to three, including Carter, 8, above, in Kitchener, Ont. I was interested in the topic of voice devices because we are pursuing one for Ben. We have abandoned many in the past because we always found the technology archaic and clunky and a disincentive to using. It seems that different programs are popular in different geographic regions. Tell us about what your child uses and why! Thanks! Louise

Choosing Carter's voice device
By Stacey Moffat

I gazed at the symbols on the voice output device shown to me by the speech therapist and I felt perplexed. The symbols were abstract and I found the system confusing.

I was used to picture symbols where one picture represents one word. Nouns of course, were easiest to represent: dog was shown by a picture of a dog and apple a picture of an apple. For more complex words like ‘in,’ positioning was shown with an arrow pointing into a box.

The language on this device was Minspeak. With Minspeak, the relationship between the symbol and the word it represents is not always obvious. For example, on this device the picture of a mountain with the sun going down behind it meant ‘get.'

To me, having a system that used pictures that didn’t clearly represent the meaning of each word seemed confusing. Unfortunately I wasn't given a thorough explanation about how Minspeak and Minspeak Application Programs work. Instead I was told that it wouldn’t matter what system I chose for my son because he would do well with anything.

But, I thought to myself, if I can’t understand the language and symbol set on a chosen device how would Carter, a boy with a developmental delay?

I decided to move forward with choosing a device based solely on size, thinking that portability was top priority for Carter. He is mobile and a very active boy. I wanted Carter to be able to take his device wherever he went.

Thankfully, before any paperwork was put in place for obtaining a device, I travelled to Pittsburgh for a conference put on by CASANA where I attended a workshop about Augmentative and Alternative Communication (AAC).

Here are some things I learned at the workshop that were tremendously helpful and steered me away from focusing on size and portability and instead toward choosing a system that fosters language development and maximizes language output.

I learned that portability and compactness do not necessarily go hand-in-hand with user friendliness and easily accessible language.

I learned that the more words that are accessible to the user on the main page of a device the better – these are called core words. They are words that are used frequently and repeatedly in the English language (e.g. want, put, get, me, my, here, there, etc.). It is most advantageous for users to have as many core words accessible to them as possible.

It was explained to me that having a variety of pages set up with different themes (a page for playing cars, a page for circle time at school) can become cumbersome to users. Systems with this type of set-up are often abandoned because users get tired of having to navigate through a web of pages in order to say what they want to say. Having several pages to sort through slows down the output of speech which can cause frustration. Never mind the fact that caregivers, teachers and therapists can often spend hours programming devices with vocabulary around specific activities only to have the child use the programmed words on a very limited basis.

I learned that there are just too many words in the English language to have every word represented by one picture. Add to that the fact that not all words lend themselves to being represented by a picture. This takes us back to my earlier example where ‘get’ was represented by a picture of a mountain with the sun going down behind it. With Minspeak certain pictures can represent up to five different words.

Minspeak Application Programs can seem quite overwhelming and difficult to understand. However, if you are willing to take the time to learn about them through direct experience you soon discover that while Minspeak is a language unlike any other, it is logical and well organized.

The clincher for me was the fact that systems using Minspeak focus on language development, not just language output. For children with limited speech that means becoming competent with language so that they can build sentences word by word. Unfortunately this process does not allow device users to speak as rapidly as those with typical speech. However, by learning to build his own phrases, I feel that Carter is more empowered when expressing himself. Rather than being limited to pre-programmed sentences that someone else has put in his device he is learning to voice his own thoughts and opinions, and how he feels about something.

There is an application that allows the Minspeak language system to be downloaded onto your home computer. By downloading the program you can then play around with the system and get to know it and understand it before committing to this type of set-up for yourself or your child. Having it accessible on a computer can be helpful for therapists or others who work with your child because it enables them to get to know the system and also gives them a system on which to model language building for the user.

When Carter’s voice output device finally arrived, it would have been icing on the cake if he'd punched the buttons in order to tell us what he’s had on his mind all these years. Unfortunately that was not how things unfolded. Carter has a lot of work ahead of him. There are still significant gaps in his expressive language. At almost eight years old, he is very much like a toddler learning about, experimenting with and building his language skills.

When I explain Carter’s language challenges to those who are interested I like to compare his situation to that of someone trying to learn French or any other language. Learning a new language requires numerous lessons and a lot of practice. Learning to use a voice device with the Minspeak language is no different.

I’m thankful that I took the time to do more research about Minspeak. Carter is extremely motivated by finally having a voice with which to express himself and he is building his language skills one step at a time.

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What matters

As we drove west to Chicago last week I travelled a route I knew so well over 20 years ago as a university student in London, Ont.

At the time, a family neighbour in Toronto owned a Mazda dealership, and he had rented me a small blood-red Mazda 323 with a stick shift.

On the spur of the moment, I might decide at midnight on a Friday to drive the 2.5 hours back to my parents' place in Toronto. I'd hop in the Mazda -- slide in my Michael Jackson 'Man in the Mirror' tape -- and crank it.

In those days, there were no lights on the 401 at London. I would drive confidently into the vast expanse of black that enveloped the highway, headlights pregnant with promise.

A couple of hours later, I'd open the screen door of our suburban Don Mills house, reach down to pick up the key my parents left sitting on the inside latch and open the door.

"It's just me," I'd call out, before locking the door and heading to bed.

I had some of the best times, and some of the worst times -- including my first severe depression -- at university. As I remembered all those miles back and forth in my little red Mazda, my chest ached because my son Ben would never enjoy the same intellectual and social experiences and freedoms.

I thought of a few things I'd read recently. One was the memoir Bad Animals by Joel Yanofsky, about life with son Jonah, who has autism. Yanofsky candidly reflects: "I was afraid that whatever progress Jonah made was not going to be enough. By which I mean -- and was as deeply ashamed to admit this seven years ago as I am now -- enough for me."

I have often remarked to D'Arcy that Ben appears to be quite happy with his life, despite its many limits and frustrations. "It only has to be enough for him," I have said. But recently, I have had to acknowledge that what pains me is the sense that it doesn't feel enough for ME!

That when D'Arcy and I walked through a courtyard at the University of Toronto recently and observed enthusiastic students-to-be touring their new home with their parents, I was filled with rage. Or that in our trendy downtown Chicago hotel populated by the iconic American family it was hard not to gape at parents with a handful of healthy children. How lucky can they get? And the flip side of that is how unfair it is that my son was one of the 3 per cent of babies born with problems and his had to be multiple. And how it's hard to acknowledge that despite years of intensive intervention, he hasn't had any major breakthroughs -- the kind regular people love to read about in kids who 'defy the odds.'

Thankfully, D'Arcy reminded me that happiness and success will look different for Ben and be defined on his own terms. He simply can't be compared to anyone. And I remembered reading a psychology book that talked about how we are each born with one unit of worth, and how it is not tied to anything we do. So, for example, babies are not less worthy because they are dependent, and people don't lose value when their abilities become compromised as they age. Human worth is inherent.

And what are the important things in life, anyway? D'Arcy asked. Is it money, looks, brains, status? Is it the appearance of perfection? At the end of the day, is that what matters? Or is it things like love, compassion, patience, acceptance?

In a culture that views disability as a tragedy and something less than human, we parents come up against what one BLOOM commenter described as "the internal struggle that exists within every parent of a child with a disability -- the desire to accept difference and the desire to be accepted."

Author Ian Brown (The Boy in the Moon) has written an exquisite piece for the July print issue of BLOOM (June has turned into July!). It's about discovering the value of children who won't achieve conventional success as adults.

"It's the very lack of so-called "normal" expectations, the absence of the possibility that we can ever "achieve" much or even disappoint each other, that frees us to be ourselves with each other, to remember who we are and what actually matters as opposed to what is supposed to matter," Brown writes. "That is a great, great gift -- and I say that as someone who hates to use the words "disability" and "gift" in the same sentence. I am beginning to realize that the world I occupy with Walker, my intellectually disabled son, is almost by definition anti-establishment: a world where social orthodoxy and conventional wisdom and received opinions have very little value. That turns out to be a good vantage point."

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On the road

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