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Tampilkan postingan dengan label severe disability. Tampilkan semua postingan
Tampilkan postingan dengan label severe disability. Tampilkan semua postingan

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

Friendless, forever?


Jennifer’s post about how traditional friendships are not possible for her son Owen got under my skin, manifesting itself in a big knot about four inches down my spine.

I’m familiar with that knot, and it tends to flare up when the Momma bear in me is fighting an injustice that I know to be reality, but which I can’t accept.

As Elizabeth notes in her comment, there’s something taboo about the idea that disabilities could render a child incapable of friendship: “I've never seen it written…Those thoughts we of like mind share and never dare to write.”

At first I wanted to argue against this premise on the basis of semantics. Jennifer defines the word friendship in her post as an independent relationship that is reciprocal and voluntary. But does friendship have to be reciprocal? What if I “choose” to befriend someone who can’t actively reciprocate? Does that nullify the relationship?

And then there’s the notion of an independent relationship. Can a relationship be independent? Doesn’t that sound mutually exclusive?

I know what Jennifer means, that a conventional friendship has to be sewn and sustained by two independent children who can choose to participate over time, and do so without the support of others. The children need to be able to contact each other – in person, on the phone or online – and communicate. They need the language to understand and enjoy each other’s company without the intervention of others.

I guess we could argue that perhaps traditional friendship is not all it’s cracked up to be. Why not loosen up the definition to make it more flexible to children with special needs?

However, this line of reasoning merely distracts us from the painful reality that kids with severe disabilities in families like Jennifer's and mine don't have friends.

At our house, handfuls of children – friends of Ben’s siblings – traipse in and out. Ben (photo above) loves it when they’re around, and is sad when they leave.

He occasionally gets invited to a birthday party, though there have been years when not a single invitation arrived.

He’s cabbed to a school a terrific distance from our neighbourhood, and most of the students there are bussed from all over the city. We’ve tried inviting kids over, but visits need to be facilitated by us because of the communication barrier (Ben doesn’t speak and knows basic sign), and nothing enduring has occurred.

Wait! There was one typical boy from Ben’s previous alternative school who showed up at a movie theatre on his own last year for Ben’s birthday. And this summer, we made a breakthrough when Ben attended overnight camp. When we picked him up, every camper had a story about something they’d done with Ben. They seemed to genuinely know him and accept him as a friend.

At other times, we’ve invited every child from Ben’s segregated school class to a birthday party, and only one showed up. The teacher explained that when kids are bussed to school, many parents don’t take the time to drive their child to after-school events, or to reciprocate outreaches.

It breaks my heart when he stands at the window signing “friends – where?” and I don’t have one good reason as to why they didn’t come (or even RSVP!).

So as much as I’d like to argue that really our kids with significant disabilities do have friends, or have the same opportunities as our other kids to have friends, the reality is that they do not.

And while Jennifer may have reached a place where she can accept her son’s lack of friendships – because he does have meaningful interaction with family, paid caregivers and others – I have not.

That childhood could be friendless is inconceivable to me. My body rebels against the idea that a kid – any kid – can’t have friends.

'Owen doesn't have a single friend'


Can children with severe disabilities and limited communication have friends? As parents, it goes without saying that we want our children to have friends, but Jennifer Johannesen has found this isn’t in the realm of reality for her son Owen, 11 (see right of photo above). Owen is deaf, non-verbal, non-ambulatory and requires full support for all aspects of daily living. His brother Angus, 9, is typically developing (at bottom of photo). You can read Jennifer’s eloquent writing about life with Owen at Yes or No/Big Decisions. Here she reflects on Owen’s lack of friends over the years. Thank you Jennifer!

'Owen doesn't have a single friend'
By Jennifer Johannesen


When Owen was younger, my biggest wish for him was to have friends. I created inclusive play environments, sent him to programs that could seamlessly accept him and his support workers, and spoke positively to other children about how Owen was really just like them underneath. I bought into this notion that if only other kids could see the ‘real’ Owen they would want to be his friend and spend time with him. They would learn how to use sign language and his communication method of the day and even use his switch to play turn-taking games!

There is value in these endeavours and in hindsight all were worthwhile, for a whole slew of reasons.

But what about friendship?

I ask myself now, even if this idyllic scene came to fruition, how is this even close? Sure, Owen has clear facial expressions to indicate his overall likes and dislikes, but nowhere near the nuance of language or communication required to establish an independent relationship with someone. I guess we can define friendship any which way, but even the most simple definition must include the requirements of being reciprocal and voluntary.

Based on this, I can say now with confidence that Owen does not have a single friend. He does not choose who he spends time with, he does not remember birthdays and he does not lend a helping hand in times of crisis. And there is not a single person who comes by the house to see Owen who isn’t family or a paid caregiver or from a social services agency.

Here’s why this is okay:

Owen experiences moments of connection throughout his day that make him glow from head to toe. When his brother holds his hands walking down the street. When Sallyanne or any of his other caregivers arrive for the day and he nearly jumps out of his seat with joy. When Angus’ friend makes faces at Owen to get a laugh, and announces “Owen’s cool!”

I love and appreciate these moments for what they are – and I don’t pretend they’re something they’re not. Calling anybody his friend does a disservice to Owen and these experiences because it’s simply not real. It’s an attribution of qualities that only serves to demonstrate the generosity of spirit of the person saying it. Or to mask the discomfort of reality.

And it really is okay that he doesn’t have friends because I see value in the interactions he does have. More important, I think he values those interactions. And I don’t place judgment on whether or not this is better or worse than what we call friendship.