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Sensory Processing Disorder: A Mother Shares Her Experience

Yesterday, a mother of a 4 year old girl with sensory processing disorder shared with us about her experiences receiving a diagnosis of SPD and what that meant to their family.
SPD affects 1 out of every 20 children, yet many parents don’t know how to help them at home.

Today we will hear from another parent of a child with SPD. Julie shares about her journey with her son:

The following is only what I have experienced and what has worked for my family. My parenting mantra and advice to others is ALWAYS “Do what works best for you and your family.”

Our official diagnosis is “developmentally delayed”.

What SPD looked like for us- strangers were feared, lights were too bright, temperatures were extreme (hot was too hot, cold was too cold), sounds were too loud, clothes were uncomfortable unless they were all cotton-tagless-seamless-collarless (white onesies were a God-send!), perfumes sent him into a screaming fit.
We used to joke that he could FEEL the carpet crunching under our feet as we walked across the house. Now I know that it is true.

What we did- Our pediatrician had mentioned Autism at our 2-year check, and then sent us off for a Speech evaluation and hearing tests.
We began receiving Speech Therapy at 2 years 4 months, and it was going wonderfully. I found an on-line checklist one night, close to midnight, as started crying tears OF JOY because I finally found something that fit our son.
As a bonus, I was proving the “experts” wrong. After 6 months of OT, I decided to take on that role myself. It was a good choice for our family. It is probably not for everyone.
He also wears tagless T-Shirts most of the time – although he can wear collared shirts now and it doesn’t seem to set off his behavior too badly.
**I would say to parents that your child may not pull at that shirt collar – they may not even know what is setting them off, so watch for behavior patterns!**

Where we are now- I know that SPD is only one piece of the puzzle that is our son. It has been two years and I am still researching. I have found other pieces that fit. Mostly things that just make me happier that I can get to know him better - things that allow me to tap into his world and who he is.
Hyperlexia is a great fit for him as well.
I had to explain to our pediatrician what this was and why I thought it fit. She now agrees. We have no formal diagnosis.
If it were not for our preschool, I would not be seeking any further evaluations at this time. Today our son is a fairly well mannered 4-year old. He looks just like any other kiddo. Sometimes the language delay is still an issue - mostly with his peers. He is getting much better with adults and is becoming less shy and much more outgoing.

Who do you tell? - We tried to explain it to our parents as best we could. I even sent my mother and mother-in-law links to the websites I had found helpful.
Our immediate family and friends were quite understanding. We lost no friends and none of them thought we were crazy. They all seemed happy for us that we found something that was working for us and for our son.
As for other moms on the playground, etc - I really didn’t feel the need to educate them. I also haven’t talked about our journey much with distant family members who may only see us once a year or less. I have probably developed a thicker skin and not cared so much what others/strangers think of us through this process as well. (And yes, I view those distant family members as strangers.)
We started main stream chapel preschool this past Fall. He had been doing so well in playgroups and Sunday School and had really made great strides over the summer (he loved the pool and was learning to swim, he played in a ball pit!) that I didn’t feel the need to say anything to the preschool about our past.
Turns out, he’s still different enough that it is on their radar, but he is in his last week of school, has loved the whole entire year, and didn’t get kicked out! More than that he’s been accepted back next year! In hindsight, would I have told the school/his teachers? I’m not sure.

Julie shares fun activities at home that are helpful to her son:
Therapy fun- Mostly it is built into everyday life.

Yoga Ball – let him bounce, roll it over him with pressure (we call this “tractor”).
Lots of stretching and crunching. Try out kids’ yoga.
We could not live without our mini-trampoline. We’re on our third. (Personal advice- Get one with springs, skip the bungee. The bungees always fray too fast on ours.)
Play ball – catch, kick, throw, T-ball, bounce, shoot basketball.
Swing is a must if your child needs that prepriotal (sp?) reset. (This is true for our kiddos who love to spin.)
My son had to be taught how to slide- choose things that naturally lead to motor planning.
Lots of small motor skills toys – beads, puzzles, blocks, play-doh.
Son’s latest favorite activity - electric toothbrush.

Thank you, Julie, for sharing your journey thus far. Julie recommends The Everything Parent’s Guide To Sensory Integration Disorder: Get the Right Diagnosis, Understand Treatments, And Advocate for Your Child (Everything: Parenting and Family) as the book that was most helpful in educating herself about Sensory Processing Disorder.

You can connect with Julie via her website, blog, facebook, or twitter!

Don’t forget to read part one of our SPD focus series!

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