Our Story

by Joey
(Charlotte, NC)

I absolutely think it is real and furthermore, I believe my son has it. He is three but cannot articulate like a normal three year old. He can sign, he can say his alphabet, count to 25, and tell you shapes but sometimes trying to say sentences confuses him. He gets so frustrated that I have literally seen him hit himself in the head as if to say, "Come on, Dante, get this right!"

Also, he is extremely particular about certain fabrics, certain textures of food, certain smells, and is very introverted. He seems to go off into his own world and I have seen him just shut down when he is in an enclosed space. He is terrified of loud noises, has odd habits of lining toys up, and is compulsive about certain items being out of place, like a DVD in the shelf not being pushed in all of the way or a dresser drawer halfway open. I am really really frustrated because he cannot go see a specialist for a diagnosis until December. My husband and I moved closer to a larger city (Charlotte, NC) so he could have more opportunity and better doctors but trying to explain this to old-fashioned family members and people who have "normal" children both exhausts me and hurts.

I'm tired of the phrase "normal". Sometimes I wonder why my child has to be the one suffering and I fear for him when he goes to school. His father and I are struggling in this economy and our move to find good jobs and there are just some days I cry because I don't understand. I feel just as frustrated as he does and I don't know anyone whose child could have or has SPD.

Children with this disorder suffer greatly and so do the ones who love them. I'm tired of hearing people tell me that it is all in my head and that I caused it because he had an ear infection that went undiagnosed for a couple of weeks once. I also get told I am selfish for getting so upset and frustrated because I should focus on him and not my feelings along with his. I feel alone and depressed that I have to see my son struggle. I just want what is best for him and to be happy and as well-adjusted as possible but until more people recognize and accept that this disorder is real, we will just have to keep doing the best we can and educating anyone who will listen.