I keep telling people that I feel like SPD is an isolating disorder. Most people don't understand what it is, so it's hard to find people to talk to about the day to day issues.
Another friend and I were joking last night that we need to have a "club" of SPD parents. We could have matching letterman's jackets, and get patches for each new diagnosis we are given, or for each year of OT services.
Obviously we are joking, and I hope it doesn't seem offensive that we talk about it in such a light hearted way. It's just that this whole thing is so isolating.
I had an episode a few months ago that will prove my point. I was at work for the day, off campus from the school where Andy attends. I got a call on my cell phone in the middle of the day from Andy's principal. Apparently there was an assembly scheduled for that particular day, and as the day progressed, Andy was showing a lot more anxiety, he was getting much more intense, was more "wiggly" than usual. The counselor was concerned as well as his teacher. The principal wanted to know if I had any ideas of things for them to do to help him out.
I had a feeling when I sent him to school that morning that he was stressing about the assembly. I mean, what could be worse for an SPD kid than sitting in a gym on bleachers with 200+ other people with bright lights, music, etc? Ugh. He complained before school about a belly ache, so I had a feeling it was already weighing on his mind. Unfortunately I had to go to work, so I sent him to school hoping for the best.
When I got the call from the principal, I felt sick in my stomach...completely helpless. I tried to call my husband (who was working from home that day) but he was on a conference call so he wasn't answering the phone call. I was frantically trying to think of what to do to help Andy out. I called a coworker back at the office and asked her if she could help me out. I asked her if I could have the principal bring Andy to her, and he could sit with my coworker instead of attending the assembly. She said absolutely.
I called the principal back, told her of my idea, and she agreed that it would be the best option. My coworker went and collected Andy, and he hung out with her during the assembly. Crisis averted.
This whole situation was extremely stressful for me. My heart was breaking for Andy because I knew he was upset and nervous about the assembly. I felt helpless because I was off campus and had to rely on other people to help him out.
When I finally left work that day, I called my Mom to vent. I was just emotionally drained from the whole experience. Unfortunately, after I spilled the whole story and took a breath, my Mom said, "Why in the world would they let him skip the assembly? Why would an assembly bother him?" Ugh.
She just doesn't get it. Most people don't. And it sucks. I want someone to listen and say, "OMG! That must have been stressful!" Or "Tell me about it...I had something similar happen a few weeks ago!" Anything.
I'm tired of people thinking he's manipulating me. Or that he's just a bad kid. Or it's just a behavior thing. Or assuming that he just didn't want to go to the assembly so he figured out a way to get out of it.
I just want people to "get it".