Tuesday, April 5, 2011

'Have friends'

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."


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.


Thanks for including Ryan in your post Louise. I loved reading about Ben's vision for the future - and about his desire to live alone. It reminded me that our kids have their own private, internal lives, with ideas and dreams of their own and how that is a gift, in and of itself. Good luck with your IPRC meeting tomorrow. I'll be thinking of you. xo Anne-Marie

What a beautiful post! Having a special child certainly makes these experiences more emotional and so much more meaningful.

Thank you for reminding me today to be grateful for the little things in life.

Our daughter had dreams too and as I slowly watched her go from a normal little girl into a disabled one, I began to realize that it's the little moments, small achievements and their dreams that mean so much more!

Sending a hug
Diana x

Yup, that's right Louise. And, Ben is a great friend to have!!!


best of luck today, i have my fingers crossed for ben!