“Severely Autistic”: Coming to Terms
Today, I heard words that broke my heart. Severely Autistic.
“Your son is severely autistic.”
I wanted to rewind the day, go back 4 hours, and cancel the appointment, but I couldn’t. It was already done and the words were said. I kept a strong face because I was alone with Ethan and his doctor. Ethan didn’t need to see me upset and I wanted to remind the doctor how strong I have been throughout the last 4 years. Strong. I have been so incredibly strong and positive. Or at least I have tried.
These past 4 years have been hard. Really, really hard. Despite the difficulties, I have always tucked my feelings away where no one else can feel them or see them. I didn’t want people to feel bad for us or to think differently of us.
My son went from “mildly autistic” to “severely autistic” in a matter of moments, in terms of diagnostic labels, of course. To us? He is still Ethan. Ethan is amazing. And difficult. Ethan is lovable. He is also so far away. I want to pull him closer. I want to hear him say “I love you” and mean it. I want him to tell me how his day went. Or talk to me about his feelings. I want him to not have meltdowns every day. I want him to play. I want him to giggle because he means it.
I want all of the things parents want from their children.
Those are MY wants, but Ethan’s wants are more important. I am being selfish for asking these things of him. My wants may never happen, and I need to come to terms with that. My wants are different than my desires for happiness. Happiness can easily be obtained if you allow your “wants” to change along the way. My “wants” need to change.
What an amazing little boy I have. He is going to be 5 years old soon and he has amazed us every step of the way.
I just tucked Ethan into bed…the same Ethan that I tucked into bed last night, and he will be the same Ethan I will tuck into bed tomorrow night.
