It’s been a while since I’ve uploaded, I know that. I needed some time away. You see, I started this blog for myself. Sort of a digital journal. It was something I enjoyed, and then it wasn’t. So, I took some much needed time off. I’d like to give a big thank you to the people who emailed me in my absence, and the people who continued to share my posts. You truly have no idea how much that means to me. That’s enough explaining, on to today’s post.
I’m sure most of you are confused because I’ve never shared this part of my life before. Whenever I mention Walter, I mention how proud I am of him and how much I love him. Both of those things are true, but I’m afraid by being too positive I’ve contributed to a twisted perception of people on the spectrum. ( I’m using the term ” on the spectrum” because Walter hasn’t been officiously diagnosed but i’ll share more about that in a different post.) Most of the time when I tell people Walter is on the spectrum, I hear “but he looks so normal!”, or my personal favorite ” really?! He seems so smart!”. It’s 2018 people! How is that so little is understood about people with autism. Why don’t we talk more openly about a condition that affects 1 in 68 children? Trust me, I know I’m contributing to the linear view people have of autism because I never share the bad parts. I’m never honest with people when the ask what it’s really like to have a child on the spectrum. Most of the time I’m not even honest with myself. So, In order to help people get a better understanding of my son, myself, and every other person on the spectrum I’m sharing the honest truth…autism sucks. There, I said it.
There are incredible joy-filled moments, and Walter is a truly incredible kid who I’ll love forever but Sometimes I want to pull my hair out! I have Moments when I just want to scream or cry, or both. Raising a non-verbal child is difficult. It’s hard for us, his parents, but it’s especially hard on him. We have to work through a lot of frustration every single day. I’d like you to visualize our day. Close your eyes for a second. Now imagine that you’re really hungry but you depend on someone else to feed you. Now, imagine how you’d feel if you needed food but you had no way of communicating that. You try to talk but only gibberish comes out. Then, you try to mime what you want but you can’t seem to make your hands move the right way. It sounds horrible, doesn’t it? That’s life for so many people on the spectrum.
As Walter’s mother, I want to make everything better. I want to help him. I want so badly to fix “it”. I don’t want to fix him. I want to do what other moms do. They make things better. But I can’t, not me. When Walter needs something and I’m unable to understand him, I feel powerless. I scrabble frantically trying to figure out what it is. I spend a few minutes showing him various items in the hopes that maybe he’ll want one of them. When I’m wrong – which I usually am – things go down hill quickly. He gets frustrated, and I can’t blame him. He puts in so much effort, despritaly trying to communicate his needs to me and time after time I fail to comprehend what he’s saying. I can usually feel the tension build as I continue to guess the wrong thing. The grunts will get louder and louder until he’s spiraling into a full on melt down. Once we’ve reached this point there’s really not much I can do to soothe him. I patiently wait for him to self regulate by stimming, all the while feeling helpless…
When you hear me say that I wouldn’t trade Walter for the world, I mean it. He’s truly an incredible child. Everyday he teaches me about perseverance, courage, and love. He shows me what joy looks like, and I really wouldn’t change that for anything! What I would like to change are his struggles.
To my darling Walter: If you ever read this, know that I’m trying my best. Know that if I could carry this burden for you I would. Know that I’m fighting for you, and will continue to fight for you until all the pieces fit.
To the autism Mama: You got this, I promise. It’ll be hard but it’ll also be beautiful. You are loved. You are enough. You are strong. You are #autismstrong!