Lately, I've told a few people with young autistic kids that it gets easier. I've always thought the hardest age is around 4, and from that point on, it gradually does seem not quite as tough. However, I don't like to tell people falsehoods, and I spent a long time yesterday trying to figure out in my mind----Does it really get easier?
In giving my answer, of course I need to say I have only my own experiences to go by. Janey is not typical, even with the autism world, I don't think. No child is typical, but Janey has not really followed even the autism guidelines. She has not "improved" significantly since she was diagnosed, in terms of speech or academics. She is on the low end of the spectrum, so that has been my experience. My other child originally diagnosed with autism is also not typical, as I think he was a wrong diagnosis, but if he wasn't, his improvement is far beyond what you'd usually see, in that he hasn't been on an IEP since 5th grade and will graduate this June with an over 4.0 GPA. So maybe I am not the person to ask if it gets better, but I will answer anyway!
And my answer is yes, but not for the reasons you might think. I don't think it gets easier because the child themself gets easier. I think that's what I used to think, and of course they do, in a lot of ways, maybe more for other people than me, but they do. But what really makes it easier is that you settle into your life, you find the right situations for your child, you change your definition of "easy." It feels easier, although it might not, from some unreal strictly mathematical viewpoint, it might not be.
You settle into the life. When a child is first diagnosed, it seems like an acute illness. You feel like you have to do something NOW (and the media and some of the autism community feeds into this). You feel there is not a moment to waste. You are rushing around, finding a program, setting up appointments, finding a school, making big decisions. It's hectic and scary. Then you are transitioning into all the programs you set up, and anyone knows most autistic kids don't like new places or new experiences. It's a confusing, scary, terrible time. But jump from that age, around 2-4, to age 8, where Janey is now. Unless you've been extremely unlucky, your child is in a school you like. You've settled on an approach to the autism, you've met other families hopefully, you are an old pro. Your life is not as hectic, and your child is not starting some new program every other day. It's the comfort of routine.
The other part is a little harder to think about. But I think it gets easier because you start expecting less from your life. Nobody wants to think this. We don't want to think that our child with autism is going to change our whole life, but like it or not, they will. When you make the jump from first diagnosed to around age 8, you have already changed your life. You no longer expect things to go smoothly, and when they do, it feels wonderful. You have probably pared down your friend list to those who at least try to "get it", so you aren't dealing with people who are unwilling to accept your new reality as much. You have changed your hobbies and cooking and work life and every other part of your life to accommodate your child. It's the new normal. And when a day goes well under the new normal, you feel good about it. You delight in little things that in the past would have gone unnoticed---drinking a full cup of coffee uninterrupted, the delightful 90 minutes a video takes to play out when you get to read a book, your child saying something new or not reversing pronouns or getting half dressed by themselves or using the potty. Littler things can make you thrilled. I'm not being a Pollyanna here. I've read that after hugely good or bad fortune in a life, most people eventually return to the same level of happiness as before the fortune, and I think that's true. You start to have a normal life again---a new normal, hugely modified, but it doesn't feel that way. It just feels like life, most of the time.
So yes, I think it does get easier. Or at least it FEELS easier. And that's about the same thing, really.
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
2 comments:
Exactly. The ability to adapt and cope develops over time. Even though on the surface things aren't easier, it does feel easier or at least manageable. The first few years are the trauma/crisis years. Now I am in the "This is it" years. Acceptance of this life is a choice.
Your post about Christmas break was one of the things that got me thinking. I like the "This is it" years. That's what they are, indeed.
Post a Comment