Mama and Dad

My dear friend Anne-Marie wrote about participating in Ben's life plan day on her blog Circle of Friends.

The photo to the right is a globe of dreams Ben and the group came up with. It includes having his own house, working as a zookeeper and travelling.

Anne-Marie was able to participate in the brainstorming from her home in Dartmouth, Nova Scotia, through skype.

You'll want to take a close look at Anne-Marie's blog, where she writes about parenting her son with Asperger's.

Ben (right) has attended a sailing program run by Holland Bloorview for the last couple of years.

I'm including this photo in a slide show we'll use tomorrow at his first life-plan session.

To me his expression says "happiness."

Last night we looked at the 'Globe' section of Ben's passport planning. This includes dreams for the future -- about where to live and work, about people in your life, and leisure activities.

I wrote a list of physical activities like "ride horses," "go kayaking," "swim" and other interests he's been able to nurture at overnight camp. At the bottom I threw in "have friends."

He went down the list and immediately pointed to "have friends."

Can you tell this is going to be an emotional experience?

When Ben was three days old we sat with a clinical geneticist who told us he had a greater than 50 per cent chance of having a syndrome. And D'Arcy asked: "Will he still be able to run and jump and play with his friends?"

The only one that really mattered was the friends part, and that is something we have to work on. He does have one friend -- Matt, who is a reader of this blog.

He doesn't have reciprocal friendships, though I know he's very fond of the students in his class. And he certainly thinks of his fellow campers at Camp Kennebec (above) as friends.

Also of note, when asked where he wants to live, Ben wants a house and he wants to live by himself. The latter really surprised me. I was sure he would choose "with other people."

He's interested in being a zookeeper, a computer gamer or working in a book store.

Tomorrow is his IPRC. I have his psychologist and an advocate coming. I hope it will enable us to look at  other programs. But I was reminded that the most important thing to focus on now is his IEP. I hope I can work with the psychologist and advocate to come up with something that we're happy with -- that is realistic and can serve as a benchmark to measure progress.

On the subject of friends, I have a dear friend, Anne-Marie, who has written a moving post about her son Ryan, who has Asperger syndrome. Ryan has a beautiful imagination that shines through the world of his Meems -- creatures with a happy face but no nose. "I find it fascinating that a boy who is not supposed to ‘get’ faces recognizes and celebrates them in all their various forms," Anne-Marie writes. "Yet another reminder that a diagnosis is just a collection of symptoms – not a definition of who a person is."

Amen!

And this is an illuminating story from The Independent about a language teacher who lost her speech to a stroke but composes music with a brain-computer interface: Locked in woman makes medical history.

Last night Ben and I added three qualities to the 'Backpack' section of his iPad, which he'll use at his upcoming passport session (to plan his life).

Proloquo doesn't have an image of a suitcase, which is what this section is actually called, so we improvised with a backpack.

This section focuses on strengths and positive qualities the person brings with them. I wrote out a number of descriptors and asked him to pick which ones he thought captured his strengths (e.g. kind, Star Wars collector, loves reading, computer whiz).

This is what he picked, in this order.

"Funny." "Smart." "Gentle." (He made it clear that he was only going to choose three qualities because of his limited interest in programming them into the device).

D'Arcy and I felt these described Ben to a 'T' and were so touched.

"Ben is smart," D'Arcy said. "But it's an unconventional smart. I wish more people could see that."

The day before we looked at the 'My story' section and in response to: "What would it be important for people to know about you?" Ben signed "I'm a good person."

The two-hour session to craft a bit of a vision for Ben's future is coming up.

We're using a tool called Passport, developed by Community Living. I like its concepts. Sections include My Story; The Suitcase (the positive qualities the person brings); The Scroll (current supports), The Globe (the person's dream of what a good life will look like); The Yield Sign (barriers); An Action Plan; and The Road (the people who will offer support).

I want Ben to contribute to the discussion so thought I'd set up these sections on his communication software on the iPad.

Recently, Ben has made it clear that he's not interested in using the Proloquo. He's deleted the software a number of times and when encouraged to use it, says "it's boring." After all my efforts to get this functional, I think I need to rethink his options for expression.

But yesterday, I realized the Proloquo may be a neat way to have him contribute to the planning day. I created a "My story" category and asked him: "What would it be important for people to know about you?"

"I'm happy," he signed. So I typed in 'I'm' and he typed in 'happy' and I asked him to choose a photo that would go with this description.

He immediately clicked on the pic above of him fishing at camp.

I know he's not always happy, and his disabilities cause him great frustration and anxiety. But my heart lightened thinking that he still views himself -- overall -- as a happy person.

Maybe this process will yield other surprising results.