Tuesday, July 31, 2012

See this cat's face? It's me!

This is a picture I took in Normandy, France earlier this month. It's in Lion sur Mer, where my Dad swam as a 7-year-old child in 1927 on holiday and then, by bizarre coincidence, landed by boat 17 years later on D-Day plus 1 with the British forces.

There were a number of houses in this seaside village with cat statues on them like this one! I'm not sure if there is any special meaning to them, but when I was going through my photos I thought the expression on that feline's face mirrored the terror I felt returning home after three weeks vacation in France and Italy.

It wasn't actually on returning home that I felt terror. I was excited to be home and to see my kids again. And I'm happy to be back at work.

Last weekend was a flurry of activity getting ready to take Ben up to Camp Kennebec for two weeks. Was I going to be able to get it together on Saturday to completely pack Ben up for the drive on Sunday morning? It began with me and the camp 'to bring' list at Wal-Mart on Saturday morning at 9. After a couple of hours there I'd crossed most of the things off. Then it was a short drive to Old Navy to pick up a few extra shirts and on to Kumon to get his workbooks. That night D'Arcy would head out to Shopper's to get the flashlight batteries.

It seemed like a small miracle when we set off Sunday morning with enormous bags of comforters and bedding and a couple of suitcases marring our rear-view mirror.

And now I have two weeks of reprieve, of not having the constant care and worry and pressure that seem to be my companions in parenting Ben.

That's what returned after I'd been home from holiday a few days. I was aware of how much of my day revolves around thinking about Ben and worrying about his future. There are plans to try using Proloquo2Go again with Ben in the fall, to try to finally give him a reliable way to communicate. The school is keen. But part of me feels like we are continuing to force Ben into a mold that doesn't fit him. Because these voice systems aren't intuitive and user-friendly they are work for him. Hard work.

That there is never a let-up on trying to make him better blend into a world that isn't designed for him and people like him. And the anxiety and stress this creates for him and us.

He's made incredible gains (for him!) over the last year at school. But it's never enough. And it never will be. And the cost is always lots of anxiety.

I thought about it after I visited L'Arche in Trosly. I wondered what it would be like if Ben went off to live in a L'Arche community (English speaking, of course!). Rather than returning to a mainstream high school where he sticks out.

I don't believe Ben has any desire to move out yet. But I wondered. Where would he be happiest?

Then I considered that if I was to ask my other children if 'they' wanted to go to school, the answer would probably be no. So maybe I wasn't asking the right question.


Never give up. Yes, there may seem to be a lot of anxiety. But there's always hope. They, you will find a way to help Ben communicate more effectively.

If Ben made incredible gains over the year, why can't that be enough? He sounds like a great guy. You may see him as different and it upsets you but maybe you can see him as unique and interesting. Please never give up; hope is a strong motivator for all of us.

Anxiety and stress is also in all of us just waiting for a time to surface given the right conditions. I learned as a parent long ago that my children pick up on my feelings of stress and anxiety very easily and can take it on themselves. Then I feel guilty. It's hard as a parent to know sometimes when to keep it in and when to express it. It's a fine balance. I guess being human we're all vulnerable.

I hope that Ben's new school year goes well. Still one more month left of summer vacation :)

Thanks everyone!

Anonymous -- It's not so much that I see him as different -- but that that is how he is viewed by society as large. He is 18 now and sometimes I wonder whether there isn't an environment for him where he would be accepted and allowed to be who he is, without constant attempts to make him more like typical youth.

What I meant by it's never enough is that his gains will never translate into him being valued in our culture because they don't rank on conventional measures.

My hope would be not that he becomes someone different/closer to the norm but that he can live happily as the person he is.

I do recognize the need to work on my anxiety and stress. I guess I also have to work on letting go of concern over how other people view my son. Thanks for your kind message!


Educational inclusion will never equal acceptance. Hence, the question becomes, "Is L'Arche the best place for Ben, and are you or D'Arcy ready to let him go?"

Taking Ben there, to visit, may not be a bad idea.

Matt Kamaratakis


I merely wish to clarify a thought, as I am passionate supporter of educating those with disabilities --these kids don't have the option of manual labour.

Therefore, "Education is an important component of inclusion, but it does not guarantee acceptance."

Thank you.

Happy weekend!!!


I am going to start Proloquo2Go with my son, Daniel. I too don't know if it will be the right option for him, but we keep on trying.

I love the L'Arche fellowship. We have one in my city and Daniel and I spent last Thursday having dinner in one of the homes.

How is the new communication system working for your son? We're about to dive into it with school system. Daniel's in 8th grade.

Hi Carolyn -- That is so cool that you and Daniel got to have dinner at a L'Arche. I really want to visit one of our local ones here, just outside of Toronto, but haven't yet.

We haven't had a lot of success with any voice device with our son Ben, but many other families like Proloquo. We are starting off with a very limited vocab now as in the past his Proloquo was huge and the volume of content could be distracting.

Would love to hear how it goes for Daniel! E-mail me your snail mail address if you'd like to get copies of our magazine