Journey toward a diagnosis - Sensory Processing Disorder.

*This is another entry into our Journey with Sensory Processing Disorder. I actually wrote this after Taylor's initial consult with a pediatric neurologist in May 7th, 2012. I'm just getting around to posting it now.*

Today,  we took another step in our journey toward a diagnosis of Sensory Processing Disorder. We've had two sessions with our OT and she's convinced based on my report of Taylor's behaviors and observing Taylor in our home for two hours in which Taylor showed her true sensational colors, that Taylor does, indeed, have Sensory Processing Disorder. Specifically, she believes Taylor has Sensory Modulation disorder with primarily sensory seeking behaviors. As I mentioned before, SPD is a neurological disorder. Back when we were first faced with road blocks of getting OT covered by our insurance, I discovered it would be helpful for us to see a neurologist and get an actual diagnosis of a neurological disorder. Currently, SPD would fall under neurological disorder NOS (not otherwise specified) since SPD is not in the current DSM.  So, today we saw a pediatric neurologist through Loma Linda Children's hospital.

In preparing for Taylor's appointments, I learned long ago, that our appts are the most productive, when I write a summary of problems I'm seeing and questions I have, along with my goals for the appt. We had Taylor's birthday party yesterday and planning for that, combined with some other unexpected stress, left me with little time to devote to prepare a written summary for today's appointment. So today, I wasn't as prepared as I usually am. The doc began by questioning the symptoms I reported verbally. He questioned how this is different than any other child. Of course, Taylor wasn't helping our case given she was sitting contently silent, and fairly still, beside me. Of course she had a very mellow day because she got lots of stimulation yesterday at her party. Suddenly I felt defensive, but I also realized I wasn't reporting my concerns well enough to paint a true picture of my daughter and our daily struggles.

I handed the very nice doctor the report I had written a few months ago for our OT. Once he looked over that list of 12 bullet points of persistent problematic behaviors which are classic SPD behaviors, as well as my completed checklist for the Out Of Sync Child, he stated a full neurological assessment is warranted so we truly know what we're dealing with and how best to help her. The neurologist agrees Taylor has "issues" and wants her seen in his pediatric neurological assessment program. Through this program, she will receive approx 26hrs of testing and observation/evaluation. This testing will be broken into 3-4 hour sessions over several months. At the end of it all, we will have a better idea of Taylor's strengths, and areas to focus on in treatment.

Ultimately, I'm hoping through this program we will reach a diagnosis and from that work on a treatment program. Most importantly, I want to ensure she gets the right strategies in place so she can continue to succeed in school. She'll be going into 1st grade in public school in the fall. Currently, she's in a private kindergarten class in a preschool where she's been since the age of 2. There are maybe 100 kids total in the school. There are 15 students in her class, 1 teacher and 1 full-time teacher's aid. When she heads to public school, she'll be in a class of 30+ students with one teacher, and she'll be expected to sit and focus for 6hrs as opposed to the current 3 hrs. Her recess time will be shorter and she won't be able to have the level of intense activity on the playground that gets currently. At her current school, she often hangs upside down on the monkey bars for long periods of time. I don't understand the science behind it, but I know that hanging upside down helps people with SPD "organize" their nervous system. According to our OT, public schools in our area don't allow kids to hang upside down on the monkey bars. Yep. Seriously. I'm sure she'll figure out other ways to get the input she needs, but that's just one of the many hurdles I see us needing to jump as she transitions to public school.

The neurologist made it clear that he doesn't feel she has "severe" SPD. I agree. I also feel like we're miles ahead on our journey since the first time we met our OT. Heck, a year ago, I didn't even realize the extent of Taylor's sensory seeking behaviors. They were pretty well managed because she was getting enough appropriate input at school. It wasn't until she moved to the kindergarten classroom last June that I realized what a sensational kid she is and how critical it is that she receive appropriate stimulation in the appropriate amount.

So, all in all, it was a productive appt.