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Thursday, November 26, 2015

Thanksgiving 2015

Last year, Janey spent Thanksgiving at Bradley Hospital, hospitalized for her increasingly agitated and aggressive behavior.  This year, she was home.  That alone was something to feel very thankful for.

There's a lot else to feel thankful for, of course.  There's my husband and sons, three amazing, brilliant, kind and interesting people.  There is Janey herself, my beautiful, fascinating daughter.  There's my extended family.  There's my friends, including all of you.  There's the fact that we have enough to eat, and a roof over our heads, and don't go to bed at night in fear.  That puts us far up on the things to be thankful for scale compared to so many in the world.  There's the many other things that make life worthwhile, for me anyway---books, cats, Scrabble, music, coffee---all of life's little pleasures that really aren't that little in terms of the pleasure they bring.  And there's just the fact we are all here, seeing another Thanksgiving Day.

It wasn't an easy day, really.  The thing about autism is that it never, ever takes a holiday or vacation.  It is with Janey always.  I wish so much she could have a day off from it now and then (and that we could, too)  The 2015 version of Janey has a hair-trigger.  She gets instantly, overwhelmingly upset over things she doesn't like, and there's a long list of things she doesn't like.  The anger, though, doesn't last a long time.  Within five or so minutes, she is usually not screaming.  But the screams are a daily, or pretty much really an hourly, occurrence.  They make it very hard to relax, ever.  We had our big meal upstairs with my brother-in-law.  The food was good, the conversation was good, but Janey was unhappy.  She screamed and flung clothes around and was generally extremely unhappy.  We were determined to eat anyway, together, something that I must admit doesn't get done a lot with our family.  But as soon as we finished, before dessert, I took her downstairs.  There is only so much that we can make her endure, and, honestly, endure ourselves.

Autism is our reality.  It's a huge, huge, huge part of our lives.  And I am not thankful for that.  As I think I've said before, I am hugely thankful for PEOPLE with autism, such as Janey.  But I am not thankful for Janey's autism.  I very much understand it when other people ARE thankful for their autism, or their children's autism.  But Janey's particular breed of autism takes away far, far, far more from her life than it gives her.  She is so unhappy so often.  She is hurting, and not just mentally---she bites her arm constantly, and not lightly.  She is unable to participate in so much of life.  It would be cruel for me to say I'm thankful for what autism has brought into our lives---the devoted teachers, the wonderful friends, the fascinating glimpses into Janey's unusual mind.  I AM thankful for all those things, but it's like saying "It's okay that Janey has to suffer so much, because it has brought us some very good things"  

So I will say to all of you reading this---you are a remarkable bunch of people.  I'm glad I know you.  But I wish we could have met under different circumstances.  

Happy Thanksgiving.


Freeyoke said...

"I very much understand it when other people ARE thankful for their autism, or their children's autism. But Janey's particular breed of autism takes away far, far, far more from her life than it gives her."

Here, here. I'm not thankful for the type of autism my daughter has. People who tout the virtues of autism are free to do so but they aren't going erase the negative aspects that some people and their families will have to deal with for their rest of their lives. I'd love to banish autism from my family and not miss its absence for a second. Yeah, would be thankful for that.

Unknown said...

I am SO GLAD I found this blog, and especially this post. It seems that all I ever see are blogs from autism mommas who are praising autism, and calling it a blessing, and making you feel bad if you don't feel the same. I am not thankful for my son's autism. Not when I see how it affects him. It has stripped him of a fun childhood. What I see is a child who is upset constantly by so many things. He can't enjoy what other kids do. It breaks my heart. It's especially hard during the holidays, and that's how I found your blog, because I was sitting here feeling sorry for myself because my son doesn't care about Christmas, and I googled the subject and found your post. It hurts because I love the holidays, and to my son, they are just another day. I love Thanksgiving, but my son wants nothing to do with it, and he won't eat the food, and he gets upset with the change in routine. It's hard to not be depressed by it all. Thank you for speaking the truth and not sugar coating. Can I have the link to the FB group?

Suzanne said...

Here the link!

I would LOVE to have you join! Your comment gave me a real boost this morning when I so much needed one. Thank you!