Saturday, August 22, 2009

Looking for a diagnosis

In a recent post I talked about Bug’s recent diagnosis with Sensory Processing Disorder, ADHD, and giftedness.  

How did we get this diagnosis?  What made us seek it out? Why did we even want a diagnosis?  What did the label matter?  I asked myself this many times, and had it asked of me many more. 

We already knew that Bug has SPD, even though it was not confirmed.  We had already been seeking out books & information to attempt to learn all we could about this and how to help her.   During this process, I learned about a local horse therapy program (a FREE one!) that I desperately wanted to get her involved in, but we needed a diagnosis first.   They needed something from a doctor/therapist that listed a diagnosis to be accepted into the program.

The other reason I wanted a label, was so I would know where to look for help.  There were so many things that her symptoms could have been, and I wanted to be researching the right ones so I could find the right solutions.  I couldn’t help her if I didn’t know what I was supposed to be expecting, or what her challenges were.   We had tried for a long time to “deal with it”, or to “fix it” through discipline or behavior charts, but nothing was working. 

Anyway, I could get her in to this free therapy if we just get a diagnosis, right?  Great, I thought, we’ll call the doctor! Well, her doctor didn’t diagnose this type of thing.  Neither did several other doctors I called.  Where do I turn, then?  Finally, someone on a local message board recommended I contact Our Children’s House at Baylor.   What a blessing!!!   All they needed, was a prescription from her pediatricians office, which they were happy to give.  We made an appointment with the neuropsychologist and were on our way!

Bug and I went one day to meet with the doctor at OCH.  There was a brief intro period where Bug  played in the room while I talked to the doctor about our concerns.  Then, I went back to the waiting room with my stack of paperwork and evaluations to fill out while the doctor evaluated Bug on her own.  Several hours later we were done.  R and I went back a week later without Bug to get the report and talk to the doctor.

Honestly, when we made the appointment, we were trying to rule out  or confirm Asperger’s, which is why we wanted to see the Neuropsychologist first before the OT.   From the little we knew and had read, we thought she displayed many of the symptoms.  Well, the doctor said she didn’t quite qualify for it even though she scored “highly probable” for it on all the tests because there were a couple issues that Bug did NOT have, that in her opinion, all AS children have.

We also learned that she has multiple things going on that, when combined, display themselves in a variety of ways.  Often these issues displayed themselves in ways that appeared as though she had behavior problems.  From the outside, it would seem she was misbehaving or being defiant, when so much of the time, she was acting involuntarily.  

In addition to the ADHD, and Gifted diagnosis, the doctor recommended a full OT evaluation for Sensory Processing Disorder.  We were already certain she had SPD, but needed the diagnosis.  This doctor couldn’t give it because it wasn’t her specialty, so we needed to see the OT.  Makes sense.

To get the OT eval, we needed another prescription from Bug’s pediatrician’s office.  That took a couple days, but came quickly.  The OT eval was much shorter (a couple hours), and the OT was able to tell me a great deal of information right away! 

We started once-a-week OT therapy the next week, and that’s where we are now!  We’ve only had one session, but I’ve already received a wealth of information from the therapist and can’t wait to see her again this week to ask more questions.

In another post soon, I’ll talk about what we are doing at home to help.

No comments: