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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