Have you ever you lost your voice and tried to tell someone something but no one could guess what you were saying? That’s sort of Joel every day. It really is such a horrible feeling when Joel is trying so hard to tell me something and I can’t understand him. The ability to communicate is often something the average Joe doesn’t think about. Joel mostly communicates through gestures and emojis. He does try to speak but most of it is very difficult to understand. The more you’re around him the more you’ll understand him. But even for me, there are times I can’t understand anything he’s saying.
I used to get jealous of other people with Down syndrome who could speak so well. I thought it was unfair and I always would think about how things would be different if he would’ve had better interventions or if we (his family) would have known better and tried harder or if the school system was better… These thoughts won’t change anything.
I’d be lying if I say these thoughts didn’t creep back in every now and then.
We’ve tried communication boards but he doesn’t really care for them. He’s used some type of assistive technology device when he was in elementary school but somehow the school system says he doesn’t need it now and/or he can’t learn to use. He used to do sign language back when he was in early steps but the school system refused to teach him. We’ve requested these at every IEP and it has gone to the school board nothing comes of it. (I definitely need to try again) We’ve looked at outside agencies for speech therapy but with no luck. We’ve been told that he is too told for speech therapy and that Medicaid won’t approve it anyway because he gets speech therapy in school. He has gotten an IPad from our OCDD with communication apps, but he doesn’t care for it. He doesn’t like using it for some reason.
Joel gets so upset with us when we can’t understand him sometimes and it breaks my heart. Other times he is so patient and will repeat himself a million times. At times, he’d get so frustrated that he’d get violent and throw things or hit people or himself. It easy to get mad at him when that happens but we have to remember that this behavior is communication. He can’t get out what he’s trying to communicate so it comes out in different ways because he doesn’t know what else to do to get us to understand.
Patience is key, and I don’t always have it. For that I’m sorry Joel.