As most of you know my 3 year old son Korey has Sensory Processing Disorder, we are trying to get connected with a doctor (click to help) who may know better. Until that happens we can only follow advice, tips, and do as much research as possible to try and find out what we can do to help him manage it.
Each day we experience the worst of SPD and the best of his beautiful personality. He continually becomes frustrated when we have to force him to sit and do therapy tasks. For 2 years he has been working on one consistent goal: be able to participate in an adult led activity for 5 minutes without getting up or becoming distracted. I cry each time we read his progress updates and this goal is still under trying.
It’s so frustrating to talk about a disorder that you cannot visibly see. Yes, parents and therapists see the signs of SPD but to ordinary people they think our children our acting out. Each child is affected by Sensory Processing Disorder differently. Korey is to the extreme on needing sensory input. His dancing, singing, jumping and throwing himself, help him be grounded and connected with his body. Without it his body feels as if it’s floating through life, every single day.
Winter is wrecking havoc on him, and us as parents. Keith is still trying to find a job while getting his TASC (formerly GED) but no one calls back. You would think with us being home with him that things would be easier but with no car we can’t take him to kid activities around town, the Strong Museum of Play being his favorite, which it’s been almost a year since he’s gone. It’s been too cold for him too outside, and the house is too small when he’s confined to a living room, we’re still trying to finish even one room but something else always comes up or we just can’t save enough.
My next request is trying to give Korey one fun day, that’s why I’m on the Korey Meets Dory mission. One of Korey’s favorite movies ever has been Finding Nemo, he became attached to it at a young age and he loves how funny Dory is. You wouldn’t believe how excited he was when he found out she’s getting her own movie! As a mother I am doing as much as I can for him every day in helping him get through tasks that are not difficult for most children but horrendous for him. Everything between eating, sharing, expressing his emotions and sleeping is a struggle and when he cannot do something he breaks down crying, apologizing. No 3 year old should have to apologize for something that is difficult because of a neurological disorder.
I want to give my intelligent boy a chance to have fun, a day without therapies and strict rules, a day to feel normal for him, filled with laughter and dance. He can sight read, spell, count to 25 and do puzzles after seeing them put together once. He’s such a visual learner and has so much potential behind that curtain of SPD that we are trying to manage. Korey would be over the moon happy to meet Ellen DeGeneres, dance with her audience and spread awareness of Sensory Processing Disorder.
— Ashleigh Walls (@artsavesyou) March 5, 2015
Facts about SPD (from SPD Foundation):
- 1 in 20 people in the general population may be affected by SPD
- Studies have found a significant difference between the physiology in child with SPD and children developing typically
- SPD has unique sensory symptoms that are not explained by other known disorders
- I will not stop fighting for SPD to be recognized and spread awareness