A New Diagnosis: Sensory Processing Disorder

When we made the switch from Primary Children's Hospital to Shriner's a few month's back, it opened a lot of doors for us to not only get treatment for Em's hips, but it also allowed us to get physical therapy, and occupational therapy services at no cost to our family, which has been such a huge blessing. Em had occupational therapy through early intervention services when we were in Georgia, but when we moved here, she was only getting it a couple times a month at school, and the only things they really worked on in school were school skills like writing, cutting, etc...


Our PT at Primary Children's thought it would be a good idea to get an OT evaluation to look at some of the behavioral problems that Em was having, so once we made the switch to Shriner's we got her on the long waitlist for an eval. Her original appointment wasn't until June, but they had a cancelation and were able to get her in on Tuesday. 

We wanted to get her checked out because Em can go from happy, to irate in about 5 seconds, and it's hard to tell what is always setting her off. To us it seemed like random things like sitting in the car for too long, getting a diaper change, getting dressed, doing her hair, doing something she doesn't want to do... I'm explaining all of this to the OT and I feel like a loser because I'm sure she's going to tell me it's typical three-year-old behavior, but then she told me that all these things I was describing aligned with sensory processing disorder.


I feel like a lot of parents wouldn't be excited about a diagnosis like this, but honestly, it was such a relief. Mostly because it means that Derek and I aren't terrible parents with a miserable child, but that Em's brain cannot compute everyday tasks the same way as you or I can, and things that we think are so routine can make her feel off balance, threatened, or dysregulated, and cause her to flip out. This also means that since we know what it is, we can treat it through therapy and hopefully give her the tools she needs to cope with her feelings and make her life more manageable for her. 

Em's biggest sensory issues are touch and balance. Things like diaper changes, getting dressed, working in PT with the PT and not mom, having new people around trying to help her, being forced into new sitting or walking positions, these are all things that tell her body to kick in the "fight or flight" responses and cause her to have meltdowns. Likewise, with balance things, she's afraid of heights and gets scared when you try and change her on a changing table, or put her up on a slide, or spin her on playground equipment. She's a lot more sensitive to the sensation of going up and down, or moving fast.


And while there are things that she certainly does not like, she in some ways is also a sensory seeker. Things like playing with paint, playdough, and being messy with her hands are things that she craves doing, along with also swinging high and fast on our swings at home. (Which almost contradicts the above statement about heights.) There's so much to this that I don't fully understand, but I'm hoping better understanding just comes with more time. 

Another big thing that the OT wanted to work on was sleeping. She told us that it's hard to deal with the sensory processing issues when sleeping still isn't under control. She gave us very strict rules to turn off all the lights in the house after dinner to get Em's brain ready for bedtime. The Darkness is a cue that will help her know what's coming up. After dinner, under no circumstances is Em to see a screen of ANY kind. Just like adults need time off of devices before bed, Em needs it even more. We're told electronics need to be off about two hours before bed. After those two things are done, then it's mostly pajamas, diaper, prayer, story, and bed. I'm actually fairly shocked, but bedtime has been so much easier the last several nights since implementing all of these things together (instead of just putting her in a diaper and jammies and just plopping her in bed and saying peace out). Derek actually just turned to me as I was typing this and said, "She didn't scream once during bedtime tonight!" 


I'm going to be honest in that I don't know the full ins and outs of sensory processing disorder yet. I haven't taken the time to google and study it all, although I'm sure I will over time. Our main tasks for the next couple weeks are to continue with bedtime, and then keep a notebook of all the times that Em has a meltdown, and write down where we were, and what the circumstances were when it happened. We'll then give all this information to the OT who will weed through it all and tell us the tools that Derek and I need to know, so that we can help prevent those things in the future. 

Also because I know people will wonder... Yes, people with Autism can have sensory processing disorder, but you can have sensory processing disorder without having Autism (and I did ask the OT, and she was very confident to say Em doesn't have Autism). Just like Em has a lot of overlap with kids who have Cerebral Palsy, but doesn't actually have Cerebral Palsy. So Em's full list of diagnosis are: Holoprosencephaly, constipation, hip dysplasia, and sensory processing disorder. The good news is she's only three, so we have more time for the list to get longer. 

2 comments

  1. You are a good mom!! Hang in there!

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  2. I'm so glad your therapist was able to help with this! It is so helpful knowing that it is a sensory processing problem. I actually have three kids who have it to varying degrees (one has autism, one has fetal alcohol syndrome and CP and one was a drug baby). BTW, all adopted. Once I was able to see the sensory diagnosis, it helped me understand meltdowns in stores, car rides and other things. My one daughter uses the swings as a regulation tool. She swings every recess at school and will ask me to find one when on vacation because the craziness can become too much for her. Good luck on this journey. So glad you have great help.

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