Recently, a friend mentioned seeing someone with a puzzle piece necklace, which he found out was a symbol of autism support. It set me thinking about the puzzle piece symbol, which I see more and more---on car magnets, in jewelry, on signs---all over. And it made me wonder why I have no desire to wear the puzzle piece in any form, or put it on my car, or, to expand, to make it my Facebook picture or, to expand even more, why I am not a more vocal advocate for autism, outside of this blog.
On a very basic level, I don't wear autism jewelry because I don't wear any jewelry, except my wedding ring. I am not very good at accessorizing, to say the least. I don't wear jewelry, I don't wear makeup, I don't dye my gray hair, I don't dress very snazzily. I'm just no good at those things. I wish I were, but despite having been "made over" many times, I wouldn't have the slightest idea how to put on makeup, or how to put together a good outfit. I let my pierced ears grow back years and years ago. You are lucky if you see me with my hair in a pony tail. That's about how far my fancying up goes. I've always wondered if it's my own disability---the inability to coordinate, to be fashionable, to do the basic things like makeup or nails that seem to come naturally to every other woman on earth. It might go along with my horrible handwriting or general messiness. There are parts of my brain that just don't seem to completely be with the program.
But on a deeper level, there are probably other reasons I don't wear autism symbols. Part of it is a lack of wanting to draw attention to myself. If I wear a symbol that not everyone recognizes, it would lead to questions, and questions would lead to explaining. For someone that likes to blend into the crowd most of the time, that's not a sequence I'd like. But another part of it is a stubborn feeling that I don't want to make autism my signature cause, my main point, the center of my life. My friend that saw the puzzle piece had a good theory on that---that in a way, I'm practicing autism acceptance. If I were to point out the autism part of my life constantly, it's not integrated into my life. It's not accepted as any other part of my life. It is pointed out and stands out. I want Janey, and autism, to be a regular and normal part of life around the community, not a cause.
I also am always aware I have three children, not just Janey, as well as a husband and other family. My boys both had asthma, which Janey thankfully does not. Freddy still has it, and is a survivor of an extremely serious attack he had as he turned 10. Tony is an insulin-dependent diabetic. I have a non-functioning thyroid, and am a pre-eclampsia survivor. William was a preemie. My sister is a cancer survivor. There are other health issues that I have very strong feelings about, and if I wore symbols of all of them, I'd probably be a little gaudy looking. To single autism out feels wrong to me. It affects our lives greatly, but it is not life-threatening, thankfully.
And yet, I feel a sense of kinship when I see someone with a puzzle piece worn. I feel connected when I see a car with a puzzle piece magnet. I am glad there are others out there with autism in their lives, and I am happy to see the symbols of that community. I guess it's a case where everyone shares in a way they feel best about sharing. I write this blog to share with and connect to the autism community. Others advocate more publicly, and work harder to educate the wider community, the community at large. Others are at a stage where they are concentrating completely on their own child with autism, and that too is completely understandable. Having a loved one with autism doesn't make us all the same, and we all do what we can do. That's the only way to get through the autism life, and in fact, life in general.
4 comments:
Exactly how I feel about it - I am glad other people display symbols, it's just not my kind of thing. And no matter what kind of reaction people seeing it have (kinship, pity, curiosity, embarrassment, fear, etc), it does raise awareness that these are real challenges that real people face and care about, not just something from a news story or magazine article. But I have never been one to wear anything on my sleeve. I've always thought, well, why would I shout to strangers how I feel about anything? Why would they care and how would I know if they did? But I appreciate that there other more vocal people than me out there, showing their allegiances and making people stop and think about the subject just for a second. I think you should get a "I don't wear make-up and this pony tail means it's a fancy day" bumper sticker.
I've been reading your blog for a while now and I've always wanted to comment but felt shy. I just want to say thank you for writing such a beautiful blog, I think about Janey often, she is truly fascinating.
On a note related to your post, I recently drove behind a car with a bumper sticker that said "Someone with autism loves me" I can't pinpoint why, but it made me cry. I sometimes feel like my daughter is a mystery to me, but I know she loves me, I know she feels love, and that makes it easier on those days when I stupidly start thinking about what it would have been like without autism.
That would make me cry too, Anabel! I've seen bumper stickers that say "I love someone with autism", but not that other way around, and it hits me harder seeing it that way too. We know our girls love us, and that does help me get through the day---knowing how much Janey needs me. I'm so glad you commented! I can understand feeling shy---I am that way about commenting on blogs a lot too, but less so now that I write one, because I know how much I love hearing from people! I hope we will get to know each other more. Thanks for reading!
Light it up blue! No.
Enough awareness. I need respite. STAT.
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