1.23.2013

Accepting autism, even when people are watching

Being handed a diagnosis of autism for your child is a heartbreaking event. But it's not a clean break like a bone which will be put in a cast for several weeks and you can expect to make a full recovery. It's more like a bad knee which may hurt less on some days than others, but you can't expect it to behave like a good knee ever again.

The idea of acceptance sounds final, done. You either accept something or you don't accept it. But while we might say we accept that our kids are autistic, I believe most of us only "kinda" accept it. I don't think there is a line between "accepted" and "not accepted". I think it's more fluid and changes constantly, even throughout the day.

For me, I find it's easier to keep positive and upbeat. It's not repressing negative feelings, but refusing to dwell on them. But sometimes they creep up. It's usually a form of an out of body experience, when I step out of my mommy love for Sophie and see her as i imagine others see her. Autistic. Delayed. Odd. And I feel sad for her, for me, even though I have no idea what people are really thinking of course. They could be thinking what to have for lunch for all I know.

Sophie is still young enough not to raise too many eyebrows out in public but the clock is ticking. It doesn't help that she is quite tall for her age and could easily pass for over 3. At this age some kids are still wearing diapers. Some don't talk much. Lots still use strollers or are picked up by their parents when they don't feel like walking. Most however probably aren't wearing chewing necklaces or are missing half their hair because they pull them out compulsively. And so while on a casual outing to Ikea this morning, I realized Sophie is starting to stick out from the toddler crowd.

First of all she has no sense of boundaries. She will happily stroll over to a family enjoying their meal. Maybe lean on someone's lap, or grab their arm. After careful inspection of their fare, she might reach over and help herself to something that strikes her fancy. Of course at some point before this happens either my husband or I will have reached her breathless and apologetic. And attempt to extract her from the kind but puzzled family's table. Which will most likely cause her to flop limp on the ground, to which the only solution is to scoop her up like a pile of spilled cooked spaghetti and sheepishly wobble away.

She is always on the lookout for a great stimming place and she finds them anywhere. As an aside, the girl is very flexible with her stimming locations and if removed from one, will promptly find another. Her requirements are that they be large open spaces with two objects to run between. A support post and garbage can work well, among many others. She found just what she was looking for in the entryway to the restaurant. Her "run" is not really a run, but more of a stiff-legged speed walk. With arms flapping, humming and the expression of pure joy on her face. There is no time limit on this stim, but after fifty passes or so people tend to notice. Sometimes she pauses mid-run to stick her arm in the back of her diaper for a bit, then picks up where she left off.

Up on bunk bed. New favorite thing

Moving right along. Sophie sees no appeal at all in the toy department so she ruthlessly cuts through it. But one of the designed rooms catches her interest so she takes a detour. Ah loft bed! She loves to be "up" and since she said the word we happily oblige, shoes on feet and sausage in hand, no less. Of course if Sophie likes something, she really likes it and sees no reason to leave. Ever. But eventually we are able to direct her attention to the other bed where she rolls around and flops from head to foot for a good 15 minutes. It is at this point that a different family enters our room with a little boy barely older than Sophie. They come, they look. The boy asks some very eloquent, proper-sentence questions which are ignored by his parents because I'm sure he talks that way all the time and there is no reason whatsoever to make a fuss over it. And they leave. We of course still have several minutes of flopping on the bed before we are done with that room.

At that point though we were still able to "shelf autism" by putting her in the shopping cart and finishing our trip uninterrupted. She generally enjoys riding in carts and strollers and was a charming little gal for the reminder of the excursion. I did have the "what will happen when she's too old for the cart" thought. Or when she's too heavy for me to carry her?

And I guess that's what I mean by fluid acceptance. Sometimes we enjoy her for the quirky but extremely lovable girl that she is. Sometimes she seems to "pass" and we get a little reprieve from thinking about autism. And sometimes she draws attention and looks and we are learning to deal with that too. But like with the bad knee, sometimes the sudden pain makes us gasp.

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Edit (May, 2014). This post was written less than six months after Sophie received her diagnosis. We were still making sense of our new reality and sorting our feelings about autism. I want to clarify that Sophie's autism is no longer like a "bad knee" in terms of pain. We have worked through those feelings and have moved on to accepting Sophie exactly how she is. I am in the process of deciding whether this post still has a place on this blog, however I tend to think that it was an honest reflection of our feelings at that time and as such should be kept, with this disclaimer. If you have read it, please take the time to read the posts I link to below as they illustrate how our feelings have evolved since then.

http://www.onthetrainwithsophie.com/2014/01/how-to-accept-your-child-has-autism.html

http://www.onthetrainwithsophie.com/2014/05/parenting-styles-and-autism-acceptance.html

 

12 comments:

  1. Oh, boy, did this post hit me. I wish I could say it wasn't true, that there isn't an age that they get to where they get noticed a lot more, but of course it is true. I think you've got a while longer, though---I don't think Janey was always noticed as different until she was about 5. She was a little small for her age then, though (she isn't now) And the walking over to people and getting on their lap! That is a hard area for me to accept. Now that she is bigger, I try to put a positive spin on it, tell them quickly that she is autistic and say "Wow, she must really like you!" which most people at least pretend to be flattered by. It is usually women about my age and general build that she does that with, I've noticed, so it's not totally random, but still... And the part about the family with the little boy asking all kinds of eloquent questions that just get ignored---I want to go over to the parents and say "do you know how LUCKY you are? Answer your son! How can you EVER take that for granted?" But of course I probably did the same thing when my boys were little---not much, I hope, but I am sure I did. I don't anymore! Thanks as always for your great writing.

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  2. I have been sitting on a post about this very thing. Having a hard time hitting publish. We have so much in common. Thanks for sharing this :)

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  3. It is sometimes hard for me to explore those feelings too, as if saying them out loud is summoning the fears to come true, almost jinxing ourselves. We are at this stage where sometimes we can not think too much about the future or convince ourselves that she will be ok,somehow (deluding ourselves perhaps). I'm guessing I will be exploring and dealing with those feelings more and more. Reading blogs of parents of older kids, like Janey kinda shatters the whole "she might still be ok" bubble, but that's ok, lol
    Shanell, we do have a lot in common, our girls were born in the same month even! Perhaps we can share this journey that was bestowed upon us.

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  4. I've come to realize that "the sad" still comes. Even after years into this journey it taps me on the shoulder or bowls me over. But I find that it leads me to God and it doesn't swallow me. I agree with you, I think it's always better to look for the positive and find the hope.

    I love your Sophie already.

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  5. My son is as of yet undiagnosed but his primary care doctor suspects he is on the autism spectrum and he will see the developmental pediatrician for the first time this month. He will be 3 March 10 and while he does speak after a year of speech therapy, his sensory issues are so significant he already sticks out like a sore thumb. Normal preschool activities like library story time are impossible. My child is the one child in the room having a melt down when they start singing. The other kids are sitting clapping and singing happily. My child is clamping his hands over his ears and screaming 'stop the noise'. We stopped bringing him. I have fertility issues and he may be our only child. I feel sad for him for everything he is missing.

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  6. With a lump in my throat I don't (suprisingly) have a lot of words to respond to this at the moment. Except for thank you for sharing & I get it too. It's amazing how it feels foreign to be around people who understand. Just wish we could all be neighbors and the girls could have a play date. And will someone please teach this out of touch blogger how to "follow" people's blogs? LOL

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  7. I totally get it. My son is tall for his age too and is 2.5... While shopping well meaning people will ask him questions and when he doesnt respond or look at them I feel so conflicted..should I tell them he has autism...he is still young enough to get by with his differences but that time is quickly coming to pass...im still at the stage when I see other mothers talking with their toddlers I become overwhelmingly sad and jealous...somedays im so thankful and some days im so angry...it could be worse sure but it could be better too..i wonder what it would be like to talk with him and hear his thoughts every moment of every day I crave it

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    1. Hello and welcome. I know what you mean by craving. I did hear Sophie speak and I don't know what is worse- never having it, or have it and have it be taken away. I guess both options are bad, aren't they.

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  8. My story is very similar to Kathleen, my daughter was sent to the specialist after her one year check up by her ped, we took her to the lady that treats my little cousin that has Aspergers, but so far im just lost sometimes, i feel like i should be doing something to help her but i dont know what. she is 1 year and 4 months old, born January 29th 2013.

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    1. Just saw your question here. Your daughter is very young still and the important thing is not too get too caught up in her diagnosis. Of course get her lined up for all the treatments you qualify for, but remember she is a little girl first, autistic second. "Therapy" can be any where- playground, playing with you, anything she can be engaged with. Little steps forward. The book that offered lots of good playing advice was "engaging autism" by Stanley Greenspan. It's techniques really helped us in the beginning when Sophie was very VERY unresponsive. Feel free to email me with any other questions I am glad to help, if I can.

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