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Monday, January 23, 2012

Child newly diagnosed with autism? Four thoughts...

I've been thinking lately about how it feels when you first hear the words "Your child is autistic". I've heard it twice (more if you count the various changing diagnosises my older son had, finally ending in no diagnosis, which I think was the correct one). It's a very, very, very horrible moment, no matter how you look at it. But I think there's a few things that if I had known them, I might have, after the first initial shock, been helped by. Here's a four item list.

1. Don't panic (or panic slowly, anyway). As the Hitchhiker's Guides to the Galaxy is inscribed, that's a big one. Your child is the same person they were the day before you got those words. They're nothing magical about them. They just describe a set of symptoms. You'll be very tempted, in those early days, to feel you have to do something RIGHT THIS MINUTE. And you will have people making you feel that way. For better or worse, there are all kinds of schools of thought about treating autism, and everyone that follows a certain school feels very strongly they are right, and wants to help you by getting you enrolled in that school of thought. There isn't a rush. This isn't always what you are told, but I truly believe it. Don't wait forever, but take a little while to think, to absorb what you were told, to gather your thoughts. If you want to read a book, one I would highly recommend is Making Sense of Autistic Spectrum Disorders by James Coplan, MD. I found it to be the most balanced, kind and truthful book I've read as a general guide. Don't tie yourself into a certain treatment that might not be right or do-able for you until you give yourself a little while to think.

2. One thing you CAN do right away, without committing to a certain school of thought----if your child is under 3, call the state's Early Intervention program. If they are 3 or older, call your local public school. Ask to have your child evaluated for services. It takes a while to get this going, so you can put in that call now. If you later decide not to use what the state or local area offers, it's not going to hurt anything to have made that call. But I think you will probably want to get these free services. I've read too many books that seem to discount public schools or EI. That amazes me. I've gotten wonderful, wonderful services from my local public school, and good services from EI before that. If nothing else, you will get a second evaluation of your child, and that can never hurt.

3. Let yourself still enjoy your child. I know at times I've felt like I couldn't do that, like all my thoughts, my energy and my time with Janey had to be focused on autism-related interactions. They don't. If there is something your child enjoys doing with you, go with it! If they are only happy in the bath, gives them 4 baths a day if you want to. If they like to watch videos, watch with them. If they like to recite facts about Thomas the Tank Engine, go out and get some Thomas books so at least they will have some fresh material. If there's a food they really like, have it more often. There will be many therapists, teachers, specialists, doctors and so on in your child's life, but only one you. Give yourself permission to enjoy that special relationship.

4. Find something that YOU enjoy doing that you will be able to do at home, in spare moments, that has NOTHING to do with autism. You are going to need that. If you like to read, hit the library. If you like to cook, get lots of staple ingredients. If you like to craft, get materials. And GIVE YOURSELF PERMISSION to let everything else go when you have a spare moment, and just enjoy yourself. The housework will still be there, but your sanity might not be, if you don't carve out that time for yourself. For me, it's word games on Facebook. When I have a minute, I play Scrabble. Facebook in general can be great---it's a way to stay in touch with friends and family without having to leave the house. Not that you are going to be home all the time, but I think you need something you do at home to be able to really use spare moments. You can't go to the Y and work out while your child watches a video or naps (unless you have a nanny or something, and most of us don't), but you can read a book, play a Scrabble round, draw a picture, whatever. Take care of yourself. There will be days you can't, and days you somehow feel you shouldn't, but you need to, to be ready for what's going to a be a long and strange trip into the future with your child.


Lee said...

I stumbled upon your blog and was totally fascinated with your courage and perservance in dealing with the challenges of raising your beautiful daughter. I read your blog from start to finish and all I can say is you offer hope to all of us that deal with life's twists and turns. What a blessing you are to your family.

Suzanne said...

Thanks so much for your very kind words. They meant a lot to me! Some days I don't feel like I have much to offer anyone, so thinking that I can offer hope to anyone is a very comforting thought. I appreciate you reading the blog and taking the time to comment!