Today we had an appointment with our pediatrician for an “Autism Follow-up”. At their 2 year appointment in December he had asked that we make an appointment to touch base with him after we got all of our ducks in a row with school and services and were done with the initial testing etc.
That’s where we are and we want to keep him in the loop, so that’s what we did. We had everything from the school forwarded to him so he could read up beforehand.
When we got there it was like he had no idea why we were there. He had everything from the school but hadn’t read it. Not a page.
First of all, we’re moving forward with a lot of things at this moment. A medical evaluation in a month, we are on wait lists for speech and OT evals, the boys are in school. We live and breath their IFSP’s.
At the beginning of the meeting he seemed to be questioning whether they had autism or not. “Language delays aren’t always autism….” This is more than a language delay. This is a LOSS of language combined with pretty much every other marker you can think of minus the scary tantrums. I’m fairly certain that we’re not going to get a different answer at this point.
Now, I know we went ahead with evaluations before he gave the go ahead and I understand that he hadn’t had a chance to read the novella that had been sent over from the boys school, but you’ve got to trust that we’re not making this up. Who would put themselves through this ringer if it weren’t real?
There were some good things, he has seen great things with ABA and also thinks our school district does a terrific job compared to some others he’s worked with. We’ve got referrals for MRI’s but don’t need to be in a rush- he said we could wait until they can lay still on their own. We may be waiting for years for that. We know that an MRI isn’t going to change much so I’m not sure why we would do it now anyways.
We talked about their sleep habits and possible medications with the pros and cons and when they would be needed. We’re thinking about adding a little Melatonin to the bedtime routine just to see if it makes a difference. I know the 2-3 hours it takes them to wind down after they go to bed would be better spent sleeping.
I think the worst part about today’s meeting was that it kind of put one more person in our path that made us question everything up to this point. We moved out of the denial phase pretty quickly so it’s difficult to have people pull us back to that place.
This is happening. This is real. We just keep moving forward, one foot in front of the other.
I’m not ready to switch docs just yet. We won’t see him again until November and by then he should be fully aware of what’s going on so he’ll be able to see for himself. He is a great pediatrician. If we switched we’d just switch to Judah’s ped who is in the same practice. Right now I’m just trying to not make any rash decisions. Right now he’s kind of the smallest player in this whole *thing* compared to the teachers and therapists and social workers…I don’t see the point in switching just yet.