A Letter To The AAP...

Dear Academy of American Pediatrics,

I am writing this to you as a mother of a sensory smart child. Have any of you ever spent time with a child with sensory processing disorder? Or a child on the spectrum? If you had, you wouldn't be doing this. You think SPD isn't real and doesn't deserve to be a stand alone diagnosis? I beg to differ.

I see the way Braden struggles with day to day tasks. I knew something wasn't right with him when he was 2, finally took him to see a doctor. We were referred out for speech therapy and occupational therapy. You have no idea the progress he has made in the last two years. He is more understandable, but still struggles with getting words out or putting them together. He repeats what he hears and doesn't know what they mean. He can't even get himself dressed, or use a pencil correctly. He is developmentally delayed. Once he started with his therapies, he made major improvements. You want to say occupational therapies don't work and instead to use behavioral therapy instead? It's NOT a behavior problem! How DARE you.

I also truly believe if you made sensory processing disorder a stand alone diagnosis, it would make getting a IEP so much easier for him. Last year, he couldn't get a IEP because his speech was just BARELY above what was required to receive one because they just base it off speech. How is that fair to child who can't function in a regular school environment? I remember waiting for him when class was over and I would always see the parapro sitting with him, trying to get him to sit down. Again, he feels he is in free fall mode. He didn't know how to sit Indian style, either. I remember the look on his preschool teachers face when I told her he had SPD. She had NO clue what it was. But since this was a regular classroom, it was just so busy for him. That's how it was during the IEP. Just so busy. Colors, toys, books, down to the bright lights in the ceiling.

Someone might think Braden has ADHD when you first see us, especially out in public. Oh my. Public outings are things I don't look forward to. Braden carries his security blanket with him everywhere. Going shopping is a big challenge for us, especially if we decide to go to a big place, or a crowded place. I really do try to go at times it won't be as crowded but we aren't in a small city anymore. He has to cover his ears. The little small buzzing of everyone in the area talking hurts him so much, he can't stand it. It is extremely loud to him. We could be in a car with the music just barely up and it would be 10x louder for him.

And eating? That's a disaster. There are a handful of foods he will ONLY eat, and that's mostly cold things. I can't tell you how many times I get asked for a bagel with cream cheese daily. Or cold chicken. Everything has to cold for him. Even he wants to take a frigid cold bath. It's frustrating. He hates touch and can't stand anyone touching his head, especially. We brush him on a daily basis, every two hours. It really works. It calms him down so much, especially after meltdowns, which he has frequently.

His doctor suggested we wait to get him evaluated for Autism, and it's been months. We're doing that now. He also told us Braden would out grow SPD. I don't think you ever "outgrow" it, you just learn to cope and deal for everyday life.

I truly hope you change your mind and think about other parents out there going through this, trying to find answers.

Sincerely,
a mother of a sensory smart child


PS - You can find my posts about Braden's SPD here.