Dear worried parent of a newly diagnosed child,
Let me just start with, I know how you feel. No seriously. In this past year, I have had not one but two of the most special little guys receive a whole slew of diagnoses. My life now consists of alphabet soup. ASD, GAD, SPD, EoE, OCD, ST, OT, FT, ABA, ECA, Hab, I could go on but I won’t. Besides, I’m sure you’ve heard all that in the random papers you were handed. You may not know what they all mean right now, but you will.
That’s not why I’m writing this for you, though. There are lots of wonderful materials that can help you in your first few minutes, days and weeks in the special needs parenting club. For now I’m not going to bother with that. Let’s just take a step back from the “what do I do now.” You are going to figure that out. That will come as it comes, and you’re going to do your best. That’s just how it is.
What I want to know is, have you wondered what autism feels like to your child?
What about how it feels like to an anxious little boy, one who only a year ago was nonverbal? I have. When I can stop planning, calling, scheduling (doctor’s, therapists, support coordinators, teachers, pharmacies, you name it), I stop and think. How are they really feeling? Are they as overwhelmed right now as I feel?
Today started out as one of the bad ones. You’ll hear about these; our kids have ups and downs, good days and bad days. He had meltdowns before school, his first meltdown during school, and even one with his favorite therapist. After his second therapy, his wonderful speech therapist came out to have the summary talk.
Let me just take a step back and say my son was barely talking at this time last year. He now does speech at home and school , and works on things like disfluent speech (stuttering because the words come out faster than he can manage), pronouns (he versus she) and increasing his sentence length. He is a smart boy, but he goes into his own place sometimes. She told me she knew he was having a hard time today, so she played a game. What makes me mad or sad? She went first and they had to take turns (to work on conversation skills, too). These are the four things he told her:
Sometimes I get mad when “sun gets in my eyes. It hurts. It’s too much.”
Sometimes I get mad when “it’s too loud. Noises hurt my ears. I don’t like it.”
Sometimes I get mad when “Mandy and Steph (his habilitators) make me do things that are too hard.”
Sometimes I get sad when “Boy (from his school). He’s not nice when he doesn’t listen (Listen to what). That he’s my friend. To stop being mean.”
You may think, wow, that’s sad. Yes, I wish everything was perfect and my son couldn’t name anything that made him mad or sad. But you know what, I’ll take him being able to express his feelings. Mad and sad are two prominent feelings in our house between both of our boys. There was a time not that long ago that he had hour-long sensory meltdowns because he couldn’t tell me what was wrong. I learned to read him when he couldn’t express anything. You will, too.
You know what, though, he pretty much hit the nail on the head. A boy who only a year ago could say just a few words told a non-family member how he feels. And it’s a pretty good summary if you ask me. His senses feel out of whack, he’s overwhelmed, he doesn’t always like learning new things that are hard and he is having a hard time with peers.
So new parents, please take a step back from the running around, scrambling to do this or that. We all know we have to do these things to get the help they need, but there’s another side you need to remember. Think about how your child is feeling. Ask them.
And new parent, from a parent not even that much further down the road than you, please have hope.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.
Early intervention resources courtesy of Autism Speaks:
100 Day Kit for Newly Diagnosed Families of Young Children
100 Day Kit for School Aged Children