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My oldest, Brother, had been seeing a developmental pediatrician regarding his autism.  At first, I had thought he was a good doctor, but I’m ambivalent about my opinion of him.  He is too busy.  He never returns phone calls and after the initial diagnosis, we didn’t see him again until last year–two years later.  So, I decided I needed someone else.  Based on a recommendation from a fellow mom from the therapy clinic waiting room, I changed doctors.

The appointment went well.  The military healthcare system is lacking in creature comforts.  It needs to be because it’s taxpayer money and so we don’t need frills like the nurse checking you in minutes after you arrive.  So, it was such a surprise to be in this place.  We arrived 10 minutes before our appointment.  I had barely sat down and opened my book when we were called back.  I was amazed.  Then, in the examining room, the nurse practitioner came in in less than 5 minutes.  The place was a well oiled machine.  After the initial contact with the nurse pracitioner, the doctor came in and verified that my son did indeed have autism and if he had to specify, it’s high functioning (this was important to me only because I’d been told 3 different diagnoses by the developmental ped).  I had wanted to know about whether we were headed in the right direction about his treatment.  Apparently, he’s receiving more therapy than most children his age.  I didn’t know whether to be happy for Brother or appalled that others were not receiving that level of care.

From this appointment, I was able to figure out many things:

1. This appointment did not leave me satisfied.
2. I want a care manager who knows the field of autism who can tell me at various stages in my son’s life what sort of therapies will work for him beyond just generalized OT and speech.  I want this care manager to help me get these services and help me maneuver around the insurance and other laws.  Right now, that care manager is me and while I’ve learned a lot about autism, I’m not an expert.  If I were an expert, I wouldn’t need therapists.
3. There needs to be more social groups for these children–especially the high functioning ones and the Asperger’s children.  These social groups are highly structured to help children learn how to relate in a social setting.  The doctor told me that even unstructured social activities are good for my son.  Maybe so, but he still doesn’t know how to interact with other children well.  His sisters know how to interact with him to get a response, but he’s really delayed socially.  If he could pick up social cues and knew how to interact, we wouldn’t have a problem.  Our therapists have been running a social group about once a month since February on their own time.  I can’t ask them to increase the amount of times they meed because it’s on their own time.  They all have families and I don’t want to take their time away from them.
4. I’m still woefully lacking in my knowledge of autism.  I need to read more but my time is finite.  And, it’s difficult reading.

So, any ideas?  Where should I look next.  Am I expecting too much from the experts?  If anyone has any good books to recommend, I’d appreciate it.  I need to get my sidebars updated with all my autism resources–I have a bunch.