“When you can’t look on the bright side, I will sit with you in the dark.” Alice in Wonderland
Hearing that your child has autism, or any neurological disorder, is so unbelievably scary. Maybe you knew deep down. Or maybe you were oblivious. It honestly doesn’t matter because in an instant everything is different.
Same kid…different future. Different path. And not just for your kiddo. But for your whole family. For me, I felt like a label was tattooed on my son’s forehead. And, ultimately, mine. I thought the label determined our future. Gosh, it was scary.
And to make it even harder, no one in my life understood or knew how to help me.
This is the little boy that I brought into the appointment. Look at him. He is perfect in every way. And yet, every single day was the hardest day of my life. He never slept. He was never content. He didn’t communicate. No matter how hard I tried to reach him and help him, I ultimately failed.
And then we had the piece of paper. The spoken words from the psychologist. Our child was autistic. And at the time, my world stopped. In an instant, my world changed forever. Or at least it felt that way. I immediately wanted to fix everything and do nothing all at once. I felt the weight of his diagnosis on my shoulders and still to this day, almost four years later, it is still securely on my back.
I have a hard time looking back at pictures from when Cooper was three. Which makes me so sad because I have two beautiful boys. Look at this picture. If you live autism, you probably notice that Cooper is in motion. Always in motion. You also most definitely notice that he is pushing away from me. I have a smile on my face. What you can’t tell is that I’m covered in sweat. I am dying inside because we were at a public event and there was no denying that my child was different. My child didn’t speak. He didn’t play. He didn’t sit or even walk. He ran. He screamed. He was full of anxiety.
I spent days crying after this picture was taken. This was one of those moments that you hear about. And I’ll never forget it as long as I live.
What no one tells you is there is a part of the grief process where you just need to sit in it and feel all the feelings. You are human. You can be sad. I resented all the people who tried to force me to see the bright side when they didn’t know what I was going through. They wanted to rush me through the grief. And that’s not what I needed. I needed to think about a unknown future with severe autism. And that’s okay.
I had to wrap my brain around the fact that this wasn’t going away. That this was forever. And it was really serious. We couldn’t hide his autism. We couldn’t run from it. And it was going to change everything.
I want you to think about that for a second. I, just like you, was just a mom. I was pregnant. I did everything right. I prepared. I prayed. And then I was given this perfect little boy that I immediately fell in love with. As I held him in my arms those first few days, I did what every mom does. I thought about our beautiful future. The cute conversations, the hugs, the hand holding, the baseball games, the school plays, the choir concerts, and so on.
And then, it was different. My son didn’t do any of those things. I didn’t know if he ever would. Nor could anyone tell me what the future held. I was scared. I felt alone. And I needed a friend more than ever. But not a friend that was going to try and fix it. I needed someone just to listen and let me cry.
What I needed the most was for someone to sit with me in the dark for a while. It’s OK to say that. I wasn’t ready to look on the bright side yet. I wasn’t ready to see how blessed I was. I just needed to feel all the feelings for a while. And I believe it’s OK to do that because you’ll come out the other side stronger than ever. And ready to advocate for the most amazing, precious human. But for me, I had to go through those sad moments. I had to grieve the life I pictured before I could accept the life that was given to me.
My hope for you is that once you have a diagnosed child, and you’ve made it through, I want you make it your mission to be that person for someone else. Say it sucks. Say you hate autism. Say you feel robbed and slighted. Say it is hard having a child with an unknown future. These are the facts that they want to hear. They need to hear them. Don’t sugarcoat it. Don’t lie. Let them cry and be angry. Sit with them in the dark for a while. Listen to their angry, confused, lost, heartbroken words.
But most of all, let them say all of their “this isn’t fairs.” Because it’s not, and you and I know that. Let them be jealous of all their friends that know nothing of autism. And especially of the friends who have children who are meeting every milestone. You know that sting. There is nothing to describe it. Let them question everything they did in their pregnancy. Just listen. Even though you know they did nothing wrong, just keep listening. Let them say every single fear out loud because you are probably the only person that will listen and understand.
Let them say that they can’t do this. That they aren’t strong enough. That it shouldn’t be like this. Answer every midnight text and early morning call. And if they don’t reach out to you, please reach out to them. Because that’s when they are really struggling. Just show up if you have too. Let them shower. Let them nap. Let them cry.
The grief may take days or months. And it may even return when they least expect it. Be their for them. Grief is not linear my friends. You know that.
And then when it’s time, show them the bright side. The beautiful side that emerges after the darkness. Show them the beauty in giving a vulnerable child their best life.
They’ll get there. Just like you did. Just like we all will.
If this post doesn’t make sense to you, then you probably don’t have an autistic child. You most likely have never lived it. I want you to know it’s not a question of love or devotion because I, and other parents, have more of that than I can even describe. It’s just scary. It’s hard. And most of all, it’s confusing.