When you realize that coping has not improved beyond a certain point for your child, and meltdowns that stress the whole family exhaustingly occur daily, it is heartbreaking not to have an immediate solution. I’ve read book upon book hoping to find the key to ease my son’s struggle with spectrum and SPD/OCD behaviors. There has been amazing growth in my understanding of how his brain works, which helps immensely in parenting, but I’ve realized that isn’t enough. He needs more help than I can give him.
So several months ago I decided to pursue a diagnosis for autism spectrum disorder. We did the intake process for Kennedy-Krieger Institute for Autism Research and resources. They called to say the wait list was 11 months out. I don’t feel like our family has 11 months. We’re struggling too much. The constant stress is causing marital friction because we have no energy left for each other anymore.
A few months ago I called about 15 practitioners’ offices to see if they could help us reach a diagnosis. I got ahold of a live person for about two of those calls. They couldn’t help. Maybe three called me back. That’s when I got him signed up for Kennedy Krieger. Waited to find out when we could have him assessed there. After I heard about the wait time, I kept calling other places. Thought I had a good option lined up, but they double booked, and I felt like that may not be a good sign, and called another 15 places. Most called back and said they do not do diagnostics for children.
The ones who do work with kids and called back said the wait list is a few months out. Because there are that many families struggling with spectrum disorders. And it’s a hard journey. It’s lonely. The main caretaker gets burnt out. The spouse gets burnt out because the one who stays at home is burnt out.
Not everyone understands. You feel unsupported by those you would like support from but who question your intuition and the whole idea of autism. If your kid does not present like Rain Man, your kid surely does not have autism, they think! I want to tell them, “Guys, it’s a processing difference, and it’s a spectrum. They can need little support and appear like other kids in classroom on the surface, but come home and have no more energy to hold it all together, and then let their frustration out where they feel safest. Or they can need a lot of support and be nonverbal. But both kinds of kids and their families can be in a lot of emotional distress because life is so hard with this disorder.”
But I don’t really have to be understood or to explain it at all to them. My job is to advocate for my child and get him and our family the care we need to do more than just survive. And right now, it stinks big time, but I guess it’s just waiting for the nearest appointment date even if it feels too far away.