Saturday, April 8, 2017

Celebrating and aware

My niece and goddaughter Clare is getting married today. Folks are flying in from all over. Everything is just about set. We are looking forward to celebrating this evening with her and her soon-to-be husband Joe.

Clare has just one sibling, Patrick. They are close, just 15 months apart and Clare has been a great big sister to Patrick. But Patrick won't be coming to the wedding. Patrick has autism and doing anything out of his routine and unfamiliar is very upsetting to him, as are unfamiliar surroundings and loud noise. All those elements together would be too much for him, so he is staying home. They have had private celebrations in their immediate family and there will be many more. Patrick loves Clare and if he could be there, he would. She knows that. And that is enough.

Patrick was a few years older than Maggie and my sister Mary was (and is) a huge support to me as I raised Maggie. Though our kids had completely different disabilities, there are more similarities than you would think. Parenting a child with a significant disability is a club unto itself and my sister and I were both members. We have the same weird sense of humor and could laugh at the absurdity of our lives together. That saved us both over the years.

It is hard for Clare to do this without her brother but she knows it's best for him and that is all that matters to her - doing what is best for Patrick. When he was young and they were all figuring out how to handle his autism, Clare would defend his behaviors to other. She would tell kids, "My brother is artistic" as though that would explain everything. (That was particularly amusing since her dad, my brother in law Channing, is an artist.)

Even though Patrick cannot be at the wedding in person, he is part of the ceremony.  Clare is having her cousin Will stand in for Patrick as a groomsman. Will and Patrick are about the same age and he and Clare have always been close, so it's perfect. Also, the groom and his men are all wearing the little puzzle piece for autism awareness in lieu of a boutonniere. I think that is just a perfect tribute to Patrick.

April is autism awareness month. We will all be aware as we celebrate today, just as we have been for 30 years.

Maggie and Patrick one Thanksgiving many years ago.

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