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.
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.