Today I took J-bear to an appointment with his primary care doctor.
This woman is lovely. You can speak with her easily and casually, she relates to you like you’ve known her for years and she looked after my son with tender care when he was dearly sick as an infant.
Yet, since August and his inital diagnosis of autism, I have had no feedback from this doctor nor have I had any cooperation from the office staff. Referrals were a nightmare to get, staff repeatedly ignored requests for information… This was not what I was used to from her or her staff.
Cut to today…
I walk in and explain about why we were there (follow up about his diagnosis, plus recent problems with intensive defensive gagging) and she just stared at me. She had never been told he’d been diagnosed with autism. She had no record of any of the paperwork sent to her, or requested from her, from all the agencies involved with his care.
Let’s break down how many people would have had to drop balls here:
– Early Intervention sent her nothing?
– Tufts Floating Hospital for Children / Center for Special Needs sent her nothing?
– Kioko Center for Pediatric Occupational Therapy sent her nothing?
– Building Blocks, the early intervention arm of the Northeast ARC, sent her nothing?
One or two groups dropping a ball, I could see. But all of them?! That seemed a bit far fetched. I felt so awful for his doctor. I truly did. She saw immediately to pushing his referrals through for the evaluations he has upcoming and made a plan for how to investigate the cause of his defensive gagging, including speaking more to his OT and getting his evaluation results from Tufts Floating back in two weeks to make sure we do not subject him to redundant testing.
This weekend, I have to find all his glorious paperwork in my possession and put it together to copy for his doctor. I keep it in two binders since each therapist outside of his OT gives me a note at the end of every visit so it’s easy to just keep everything together.
I admit to feeling so much better about his doctor but so much less confident about his office staff.
A funny story from the visit though:
J-bear decided while the doc and I spoke that he was going to open the office door and peer out. He would open the door a crack, peer out, say bye to whomever passed and close the door. He did this several times, finding it the most amusing game on earth. Whoever thinks children with autism cannot be socially motivated clearly has not met my little guy! Granted, he refused to talk to his doctor or when prompted by his doctor but he did speak with me, give her a high five, and demand to leave by saying all those “bye”s.