Dear new autism mom,
First of all, I want to say I’m sorry. Even if you’ve suspected your child has autism, having your theory confirmed hurts. It’s like a smack in the face. It feels like all of the plans you had are gone and the child you expected to have may never be possible. I’ve been there not once, but twice. I’ve had to sit through a meeting where someone breaks the news that my suspicions were correct.
Despite how you might feel right now, this isn’t a death sentence; your life isn’t over. Things aren’t going to be what you expected but it isn’t over. You still have this sweet little one who needs you even more than you realize. So no matter how you’re feeling at this moment, you have to be strong. Don’t let this knock you too far down.
The best thing somebody told me when I found out my son was autistic is that he’s still the same little boy I love. Autism steals a lot, but that little face and that personality is still there. That little one isn’t a different person just because he has a label.
I wish somebody would’ve told me to apply for every waiver or state assistance possible. It’s going to be hard, and while some things get easier with time, new issues always seem to come up. At three, you might think, I’ve got this, but when they get older, you might feel differently. I recommend researching and applying for everything you can. You will almost definitely be put on a waiting list but the sooner you do this, the sooner your child might possibly start receiving services.
Save everything. It seems everybody wants records of everything. Start a folder and save school and medical paperwork. I can almost guarantee somebody will want them at some point. If you have them ready to go, it saves so much time.
Find some friends, whether online or in person, who you can share your autism journey with. It really isn’t easy and there will be days when you don’t feel like you are strong enough to keep going. If you can find some good support, you will have somebody to vent to on a bad day, get suggestions and advice from, and you’ll know you aren’t alone. Seriously, you aren’t alone! There are so many families out there dealing with an autism diagnosis. Many of these people are a wealth of knowledge.
Celebrate everything. My boys always seemed to learn and do things a little slower than most. I learned early on to celebrate the little victories. Progress might not be fast, but it is there so get excited when they learn something new.
Your plans for your little one will almost definitely have to change. As they get older, you will start to realize what they are capable of. Don’t let this get you down.
My goal for my boys is to be as independent as possible. I want both boys to work and have some adult responsibilities. Will they go to college? Probably not, but over time I have learned to accept that, it’s OK. I strive for them to be the best versions of themselves even if that means bagging groceries or cleaning tables. I don’t know what their future actually holds, and I don’t know your child’s circumstances, but I can almost guarantee your plans will have to change, so be prepared.
I think the most important advice I can give you is to tell you this really isn’t the end. You will fight for them, love them, and be your child’s biggest advocate. It will be hard some days but be thankful and excited for every success and every sweet giggle because those things will not be gone. This really is just the beginning of a new adventure so buckle up and get ready for the ride.
An autism mom of two