Who manages your child's care?

iVillage Member
Registered: 11-07-2004
Who manages your child's care?
11
Fri, 06-23-2006 - 8:35am

Ok, our child psychologist diagnosed my son with Asperger's. She stated in her diagnosis that he should be evaluated again by an OT (he was diagnosed with Sensory Integration Disorder at 3 years old and had therapy) and he should be evaluated by a speech therapist. Along with that he needs social skills therapy. What I want to know, is who is my team captain in all this? We are done with the psychologist and now need to see all these other people, who manages this? My primary pediatrician? Or me?

I did make an appt with our pediatrician to go over the diagnosis and get our referalls for these specialist evaluations. We do have a great pediatrician and have been with him for 12 years (since my oldest was born).

It just seems like so much to do and with my lack of experience I am not sure if I know what exactly to be doing?

Pages

iVillage Member
Registered: 10-03-2004
Fri, 06-23-2006 - 1:01pm

Team Captain - yup! I am in charge, dh is co-captain of the team, 3rd member is more and more (as he gets older) -- my son!

If this was a medical dx, this would all be a different story. This is an improvised journey, more like LIFE than treating a disease. We are in charge because this is about raising a child!!! We don't cure autism (can't yet, don't know what it is, really...) instead, we live with it, work around it, address each issue as best we can and help him learn and grow.

We have LOTS of Advisory Committee members here, lots and lots. My son sees a psychotherapist 2 xs a week and she specializes in kids with ASD. She is a real resource about what goes on with him because of the ongoing therapeutic relationship! To a lesser degree, my son's many, many teachers and therapists -- who are changed on us every year -- play into our decision making, also the psychiatrist who perscribes anxiety meds, moms and dads of his other ASD friends help out because they know him well and also have their own takes on when they spend time with him vs./along with their own kids... And my family is a good resource, even though they are not near, but we have several educators and other terrific sets of parents, good outside points-of-view for us!

And as Team Captain, I learn as I go. Most of my solid real information comes from knowing my son, staying focused on his well-being first and foremost. The experts really are backups, as they cannot be as specific to who my son is and what he needs as I can.

It is daunting, frightening, esp. at first when there is so much to learn and process, all at once. I still get overwhelmed sometimes, like this week for at least 2 days, completely overwhelmed. But I am hardly ready to turn over the position to anyone else quite yet!!!

Sara
ilovemalcolm

Pages