What Sensory Processing Disorder is to our family…

So I’ve struggled on how to put into words what our family goes through on a daily basis with my 7 year old son.

When I think back, it’s been his whole life really…. from not being able to nurse with the bright lights of the hospital at not even 24 hours old…. not being able to take a bottle because he couldn’t find one he liked…. constantly chewing on my chin or putting his mouth on my chest just to feel comforted…. Crawling under his toddler bed or his brothers twin size bed to sleep at 18months old because he liked the tight space, which would scare the crap out of me when I’d go to check on him at nap time or in the middle of the night and could NOT find him.

Since confirming his diagnosis at age 3 we’ve been on a roller coaster of highs and lows… feeling like we take a step forward only to take 5 backwards. It’s been a struggle to find what works, especially now that he’s getting older and he doesn’t want to do things like “heavy work” or “brushing” as much. We still do occupational therapy to improve his hand strength and currently working on outburst control. He responds well to his therapist but when we come home he’s less responsive to me which is always hard. He’s finally eating a wider range of foods and thankfully the foods he enjoys are mostly healthy.

Sensory Processing Disorder for us is:

•knowing we can’t go a birthday party without the risk of a meltdown

•letting him perch on the back of the couch like a parrot just behind my shoulders

•laying with him during a meltdown and letting him watch cooking videos on Tasty’s Facebook page because it calms him down

•holding him and it not being enough

•putting a weighted lap bag in his backpack and letting him walk around with it before going into our homeschool co-op to decrease the anxiety of transition

•hearing him say really hurtful things to me and other loved ones because his emotions are completely out of control in the moment while he cries so hard

•putting my emotions aside to make sure I stay calm in a meltdown, with 4 other kids in the house this is honestly one of the hardest things

•losing shoes for months because he can’t keep them on for more than a few hours (most recently we found a shoe that’s mate had been at our house and left me thinking for sure it was somewhere on our property… he likes to take one off outside and one inside….. we found the other one finally at my grandfathers house)

•taking him out to swing because I know he’s overstimulated and needs that sensory input

•not fighting about socks

•giving as many reminders and as much information as I can when we leave to go do something so he’s prepared for changes in his routine

•reminding my 4 year old to put the play dough and Kinetic sand back exactly the way my 7 year old left it when he’s done playing with it

•realizing how smart, caring, and beautiful my child is through all the hard times!

Words will never be able to make someone understand the joy and heartbreak that you can feel when your child has SPD. While my son likely won’t outgrow it completely, everyday we find things that work and things that don’t….. things that are triggers and things that are comforts!

Him and my 9 year old brought me these “flowers” this afternoon and it made the hard time I’d been having inside melt away.

I want to say to any families out there that are learning how to navigate Sensory Processing Disorder to please keep going, don’t get discouraged…. Your beautiful child is still inside even when it feels like you don’t know how to handle things. Just take a deep breath and try as many things as you can until you find what works for you and your child.

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