I often get asked what exactly is wrong with Kiara. It is not an easy question to answer and I had to try and have a discussion with my dad about it over the holidays. No one really feels Sensory Processing Disorder is a real thing.
Despite having undergone numerous evaluations and tests, no one has ever diagnosed Kiara with anything, which is actually more frustrating. If she had ADHD, we would know what to do, we could develop a plan for dyslexia or autism but not knowing definitively what it is is not so easy to work with.
What we do know though is that she has sensory issues, she has a form of dyslexia, she has some eye issues which in turn make reading a challenge for her. Most of this we have muddled upon on our own.
Figuring out her sensory issues took many years of tantrums, lack of sleep and huge amounts of frustrations. It has been challenging parenting her and the other kids (2/4 do not have sensory issues). It is a constant struggle to get people to really understand her and that what she is feeling is not just her being naughty. This has been especially challenging when dealing with Jack’s sensory issues.
Despite dealing with her, I wasn’t really prepared for it when Jack displayed signs of also having Sensory Processing Disorder but I do think I have handled it better.
Kiara is now 11 and Jack is 4 and all of us have a better understanding of how to deal with them, they are both dealing with them a lot better.
Kiara will still only wear certain clothes. She only wears jeans if she has to (like for dancing), do not give her any pants with a button and a zip, long sleeves with a cuff like her school shirt are a no no, she can’t wear flip flops. I don’t fight it anymore, shopping is only done when it has to be done (when there are holes in her clothes) and I accept it won’t be a quick or easy outing. Jack is also doing a lot better but he still does need his long sleeves when he is feeling very overwhelmed, even if it is hot. I don’t fight it, we compromise, he wears his uniform to school but the minute he gets home he puts his jeans on (it depends on his day, some days it is immediate, some days it takes an hour or two).
They can’t function on little sleep. Even at 11 if Kiara doesn’t get enough sleep she gets completely overwhelmed. She loves going on her school camp but for 2 days after she gets back she is useless. Jack copes slightly better but still doesn’t sleep through every night, on bad days he moans and cries all through the night.
Jack struggles a lot with loud noises. He gets overwhelmed very quickly if the radio is too loud or the kids in his class are too noisy, alarms freak him out. I try to manage this as much as I can and avoid places that are too loud but he is learning to cope with it.
As they get older it is less about how to deal with them but more about teaching them to deal with themselves in a world that doesn’t take kindly to people who colour outside the lines.