People sometimes wonder how we ended up at not 1, but 2 neurodevelopmental pediatricians (ND peds for future reference). Here in NJ, the waiting list is LOOOONG. 8-10 months is typical. So it's customary to get one at least a few different waiting lists. I had criteria-- as every Mom does-- the physician had to be board certified, etc. That cut my list down. I think we ended up on 3 waiting lists.
How did we reach the point where we were seeing the ND ped? Kate's preschool speech therapist suggested we do so. She and the special ed teacher (inclusion class) were seeing some behavoirs that were suggestive of an ADD-type of diagnosis. Mostly during circle time and group activity. She seemed to have trouble with following multi-step direction. I mentioned this is also consistent behavoir with Auditory Processing Problems-- but both seemed very unfamiliar with that term. The Child Study Team was in agreement that a "diagnosis" would be helpful in terms of securing future services for Kate, so off we went.
We saw Kathleen Fadden, MD's team at Morristown Memorial in NJ last June for the "parent consult." While they never did get around to doing an evaluation on Kate, it was a good learning experience for me. Without even seeing her, they agreed it didn't sound like she had anything that even remotely resembled ADD. They also mentioned that when there is any kind of behavioral/learning problem, the first thing they ask about is sleep habits. Fortunately Kate has been a good sleeper for the last few years. We discussed things like learning to read-- The Your Baby Can Read Program-- and they absolutely agreed with me-- it is just memorization-- and pushing the brain to do things like that at a young age breeds learning disorders later. A child can't learn to read, from a phonetic perspective, until the Proprioreceptive system is fully functioning. A fully functioning Proprioreceptive system comes on board sometime between ages 4-7. That means the left and right side of the brain are speaking to each other.
Last June, Kate's proprioreceptive system was not fully functioning and she was clearly struggling to read. Sometime this winter, it got up and running and things seem to have "clicked" for her. A simple test you can use to check if this system is running is- have the child close their eyes and try and hop on 1 leg. Or, does the right arm swing forward as the left leg comes forward while the child is walking and vice versa? The child will be able to do these things if the Proprioreceptive system is working at 100%.
Kate wasn't able to get an appointment with Dr. Fadden until after the start of the Kindergarten school year. This was less than ideal for many reasons but I was really reluctant to have to take her out of school for the appointment. When we got a call from Barbie Zimmerman-Bier, MD's office at St. Peter's University Hospital in NJ saying their office had a cancellation (in August, before school started!!), we took it!
We spent 2 hours with Dr. Zimmerman-Bier. She did many tests on Kate. She absolutely agreed there was NO ADD going on. Her official diagnosis was Auditory Memory Deficit and Expressive/Receptive Language delay. She wanted Kate tested for an Auditory Processing Disorder when she was 7 (the minimum age at which they will do the testing).
Where has this left us, you ask? Well, we continue to follow up with the Audiologist (still can't get a complete hearing pass in her left ear). We're having a baseline hearing exam done with the Audiology folks at CHOP (Children's Hospital of Philadelphia) on May 28th. They will do the APD testing next summer. We see the ND ped every 6 months so that she can light a fire under the school district (they are very motivated by physician letters, it seems). We're doing everything we can to facilitate Kate's access to learning..
It hasn't been an easy road, but almost 6 years later, I feel as though we're getting somewhere!
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