For some reason, I started looking today at various fact and advice sites for those with a child newly diagnosed with autism. It was strange---although it's been 8 years, I still felt panicky reading the information there, feeling like I wasn't up to the challenge and I was going to do everything wrong. It took me back, and in a bad way. So I thought---what would I say? What would I advice? And then realized what I'd have to say might not be the best thing for someone to read that was new at all of this. Maybe the busy lists, the lists of tons of people to call or books to read or therapies to research are the best way to handle the early days. Maybe it's better not to think too much, and rather to take action. But here's what I'd say, and if you really are in the early days of a diagnosis, think twice before you read this, because I'm going to be brutally honest with my five talking points. Not brutally negative, but brutally honest.
1. There is no way to say right now how this will all play out. Your child might be one of the super-achievers. There might be a day, years from now, that they pull down all As from a fancy college while carrying a part time job and having good friends. Or...they might never progress much at all. They might even regress some. They might never learn much more than they have learned right now. I had one of each of those. The very high achieving child was probably misdiagnosed, but then again, maybe your child was too, or maybe mine wasn't, and was just someone destined to progress. Don't let anyone tell you what your child will do, although knowing that you don't know is a mixed blessing. I read a book once about girls with autism that said something along the lines of "Girls with autism have an incredibly bright future ahead!" That line makes me mad every time I think of it, because for many girls (and boys), it's a lie.
2. Your life is not going to be what you expected. I'm not going all trip to Holland here. It's not going to necessarily be better than you expected, but then again, it might be not worse. It's just not going to be the life you pictured. No life ever is, but yours...more than most. You will live a life of IEP meetings and meltdowns and special interests and sleepless nights and desperation and pride and laughing and crying. Not all at once, and not all of those maybe, but you'll have highs and lows higher and lower than most. You've been taken off the mainstream track and moved to a different one, one that isn't going to take you where you expected.
3. Everyone will tell you that you are going to have to be an advocate for your child. Don't let that terrify you. It will come naturally. Not everything has to be a fight. You will be pleasantly surprised how many people truly want to help you, and are kind beyond anything they need to be. If you don't feel up to a battle over some issue, it might be that issue isn't worth battling over. I am the least confrontational person I know, pretty much, but even I find when the issue is important enough, I can do quite a battle, and you will too. The one area I do want to say you MUST ALWAYS SPEAK UP is for medical issues. If you KNOW your child is very sick, and they aren't getting the treatment they need because they can't communicate well, SCREAM if you have to. Your child's life may depend on it, as Janey's life did with her appendix crisis.
4. Figure out a way, some way, to enjoy yourself even if you can't leave the house. Because a lot of times, you aren't going to be able to. Finding respite is near impossible, at least in the United States. So you might need to mentally escape when you can't physically escape. Get into something like online games or gardening or knitting or sewing or working out to music or whatever floats your boat, but make it something you can pick up and do whenever you have a moment.
5. Enjoy the good moments with your child when you can. There are going to be very tough times, but believe me, there's going to be a lot of fun, too. There's going to be times your child does something you never thought they could, or says something incredibly funny (whatever way they communicate) or gets so into a song or a video or a book they laugh so hard and dance so hard that you can't even help but laugh and dance along. Don't feel like you have to have "normal" fun to have fun. Don't ever feel like the things that delight your child should have to be "typical". Typical is overrated.
I said five things, but here's a sixth. It gets easier. It really does. It might get tougher before it gets easier, and it might swing back to tough for periods of time after it gets easier, but there is going to come a day when life feels under control again. When the nights are very, very long, when you have been bitten and hit, when you are cleaning up a diaper mess for the hundredth time, when you want to fling something at the TV when they say it's a snow day, when you despair----please remember it does get easier, and feel free to post a cry for support on the Facebook page that goes with this blog. We have all been there. We have your back. I am thinking of you, about to start on this journey, and I send my love.