Some days I get really mad at autism. Some days I see my son struggle under the weight of not being able to process, and it crushes him- which crushes me. Some days I’m less patient than I want to be with the meltdowns, and that makes me mad at myself.
I know I’m only human. I know I won’t do it right all the time. I don’t fancy myself a super hero who is impervious to frustration. I am not.
In the last few weeks Ethan has had more hard days than good. He’s been battling a double ear infection, and out of that, he’s had a hard time. Because of his verbal delay, he can’t always tell us when something is wrong. It usually has to get bad before he tells us something hurts. We have to always be extra mindful and pay close attention to him. I long for the day that he can just say, “My tummy hurts.”
That makes me mad at autism. It makes me mad that the pain has to get so bad before he can make the connection and verbalize it. It makes me so mad that his meltdowns are becoming more aggressive.
I recently started doing CrossFit for this very reason. He’s almost 5, and he’s already a giant and is incredibly strong. I need to make my body stronger so that as he grows, I can help him manage those feeling and help him physically when he needs to be comforted and kept from harm.
Sunday was a bad day. We couldn’t get out of the house to go to church. We couldn’t get out of the house to go to the Autism Walk. It was paralyzing and exhausting.
He’s getting so much better at calming himself down. He’s rebounding quicker, and I’m glad to report that we are finally at the top of the list for ABA therapy. I can’t wait to see where this takes us.
Some days I just get so mad at autism, and it helps to let myself feel that. If I can see it, I can know how to deal with all that comes with it. It also helps me still see Ethan in the hardest moments. I see him and see him struggle, and it breaks my heart. I see the little boy who loves to play and sing and cuddle even when he’s so overstimulated he can only scream. I can still see him and work to get him back to who he is.
Be mad at the behaviors. Be mad at the struggle. That’s okay. Just don’t forget to see your child and yourself. Don’t forget to give yourself grace as you put on foot in front of the other on a path that won’t be exactly like the one anyone else has taken. Your child deserves that, and so do you.