Then it happened to us.
Reagan was the first to be diagnosed with Aspergers. Then Ciaran with Autism Spectrum Disorder. Then Piper with Aspergers.
When I got the first diagnosis, I cried. What did this mean for my kid? For us? I felt like we were something different, and it was going to change our whole identity. For a while, I think it did. But it didn't have to. And it doesn't for you, either.
I've met several people, recently, who've asked me about having a child on the Spectrum. Advice? Wisdom? Something useful? I get it, I do. It's like being thrown into the deep end of the pool, and you want to do the right thing, because your child's future depends on you navigating the water properly. But, you don't know exactly what you should do. But hey, no pressure.
Here's what I wish someone had told me:
- There is nothing wrong with your child. He or she is wired a bit differently than other kids. It creates some challenges, to be sure. But it also creates people who see the world in a distinct and unique way We need people who can bring that perspective to the world. They make us better.
- Those challenges can make you crazy, but try to keep perspective. Every kid, Autistic or Neuro-typical, needs to learn skills to navigate the world easier. An Autistic child will just need a different set of skills. But I promise you, they can be learned and taught. Don't let it scare you.
- Your child is a gift. You really already know that, but with all the talk about therapy and what they need, you can get lost in the fear and uncertainty. It can feel like all people see when they look at your child, is the Autism. So let me tell you again, that your child is an amazing gift. They're perfect. They were perfect yesterday, they're perfect today, and they'll be perfect tomorrow. Hear me? Perfect, little, learning people. Or at least, perfect in their imperfection. Just like all of us.
- Our kids are honest. They will tell you what they think, and you will always know where you stand. Sometimes you'll need to have a thick skin, and not let things bother you. Sometimes you'll set boundaries and teach them that they have to be careful about their words. These are good lessons for them, but seriously, pick your battles.
- Sometimes our job is to teach our kids how to navigate the world. Sometimes our job is educating the world about our kids. Spectrum kids will always be who they are. We have to teach other people how special they are, and how to understand them. Which brings me to my next thought:
- This is controversial, but I do not believe in finding a cure. This is a neurological condition, and is part of who our kids are. My children are Autistic. It's not bad. It's not something that happened to them. I don't think we need to cure it or fix it. I think we have to parent them with love and acceptance, keep teaching them how to self-advocate, and we need to keep teaching the world that they're not broken, they're special.
- I have learned to be distrustful of any organization (for example Autism Speaks) that treats Autism like a burden, that sells parents a pack of fear, and makes Autism sound like a terrible thing that has happened to our families. Remember, there's nothing wrong with your child. They're perfect.
It's going to hurt, sometimes, when we take our child to a class, or a group, and they don't do what the other kids do, or enjoy what the other kids enjoy. It will feel like they're missing out on something. But they don't think they are. hat's all us. They're fine. They're already thinking about something else. And the things they perseverate on, can be absolutely fascinating. Ask Piper to tell you about Sonic the Hedgehog sometime. You will learn more than you ever wanted to know. Including how there's a Sonic the Hedgehog protein. Seriously.
You already love them, so above all, keep doing that. If there's something else you'd like me to address, or questions you have, feel free to share/ask.