|Once She Started Walking, She Never Looked Back....|
The "R" in WAGR means there is a RANGE of Developmental Delays. One child may walk and talk along the same developmental scale as a "typically" developing child. In our case, Evie didn't walk and talk until long after most children start to. It wasn't from a lack of trying! We had in-home PT from the time Evie was just a few months old. Our PT would bring in all kinds of slanted seats and bean bag props to help her develop better posture to compensate for her low-muscle tone; water noodles for holding up and getting Evie to grab on to, and bubbles to blow and get Evie to crawl after or reach out for. I didn't realize that PT was there to help us realize even a small milestone like increasing the degree to which Evie could dorsiflex her foot.
OT would come into our home and help Evie develop skills like picking up small objects between her fingers, or putting objects into holes, stacking things on top of each other. These are called fine motor skills, and they were quite challenging for her...even at age 10, she has a hard time locking doors, zipping zippers, putting on shoes, or placing books in a bookshelf. Is it her vision? Is it her tactile discrimination? Is it a nagging inability to use isolated finger movements? It's quite difficult to know.
What I didn't realize, after Evie started school and was getting services at school and no longer in home, was that OT and PT would once again become very important to us down the road in an "out-patient" setting at the hospitals and clinics in Madison. We got Evie into OT when she started to have behavioral issues ("meltdowns" if you will). There were many times that I would actually become afraid because she could grab me and bite me, and had an INCREDIBLY strong grip. Once I read The Out of Sync Child, I knew that we were dealing with textbook Sensory Processing Disorder. Evie loved to spin, jump, twirl, ride on carnival rides, fly in planes, bounce...these were all things that seemed to calm her. The biting was her way of telling me that she felt out of control and unsafe in her surroundings.
The OT recommended an immediate "sensory diet" which consisted of modulated music therapy and the Wilbarger Brushing Technique. Once we started these techniques, Evie had a developmental explosion...we saw increasingly understandable speech, less frequent and less intense meltdowns, she potty trained (this was much later than other children normally potty train), and she began to walk with more confidence and precision. It was almost as if she was "in touch" with her body for the first time.
We also had to embark on a new PT journey just a couple of years ago. Through our participation in the 11p Deletion study at the NIH, we learned that Evie would benefit from orthotics in her shoes. Once we had an evaluation with a local PT, however, we learned that with therapy, she thought Evie would be able to get by with Super Feet orthotics rather than AFOs or another clinically made orthotic. Sure enough, after several sessions over several months, Evie's dorsiflex had increased in range (which corrected her toe drop), and she was walking and running better than she ever had before, not to mention a tremendous growth in her endurance for physical activity.
So, which comes first? OT or PT? The answer is that it will be different for all of our kids with WAGR, and will be ever changing depending on what will make our kid stronger, more confident, and more capable at any given time. But it's important to recognize that the two can be closely related and interlocked. Evie's PT was more successful when she was also immersed with OT and vice versa...they compliment each other quite well in that regard.
To read more on Sensory Processing Disorder on my blog, you can go to Et Cetera...
To read more on WAGR Syndrome on my blog, go to WAGR or WAGR/11p Deletion...