Stroke Clinic Appointment

Good and bad. The bad started with traffic for 90 minutes and Mairead being in no mood for the doctor when we got there. She was cooperative with the resident who came in first and seemed to like her a lot, so things started out well. Then, the doctor came in and things started to go down hill a bit. Mairead didn't warm up to him, and was getting sick of being there by that point. So, we are in this tiny room and he is asking her to do stuff, and this leads to tantrum/shut down mode. I can't blame her THAT much after being in the car for so long, being patient in the waiting room, being good with the resident, etc, but she has GOT to learn more patience for being someplace she doesn't want to be. Anyhow, I digress..

The good- he is very willing to help us. He said he will call the developmental medicine center and see if they can bump us up on the waiting list (right now, we are looking at sometime in March). He will write a letter for insurance and the schools emphasizing her need for OT, PT, and speech, and relating these needs to her specific diagnosis (and in his opinion, disability), and he agrees that I should take her to a neuropsych for more testing. He wants to help, he agrees with what I have done so far, and he seems to listen to me.

The bad- about her language/comprehension, he said, "based on her MRI, I would not expect to see this level of dysfunction, so I have concerns there." Ouch. I literally felt my stomach turn when he said this. In other words, he can't really explain why she has this level of delay with language and comprehension, so he is not quite sure what to do about it. I know that sometimes an MRI just doesn't show a good 'reason' for a person's disability, but this was still not ideal news. He is going by the results of her IFSP and the LAP (done by the schools) which put her at about a 12 mos delay. The developmental pedi we saw says he doubts that is accurate because he believes her receptive language to be better than that. So, the 12mos delay is too much for neuro guy to be comfortable with, but 12mos may not even be accurate. Does that make sense?

I was afraid he was suspecting ASD and was not telling me, so I brought it up and said, "No specialist or therapist who has seen her believes that she should have an ASD diagnosis." The resident is nodding her head in agreement as I say this. I then said, "So, if it's not Autism, and you don't think it's the stroke that is causing this, then what is it?"

:crickets:

He didn't immediately answer, but then said that is why I need to go to the developmental medicine center and the neuropsych because they do more comprehensive evaluations, we'll go from there, etc, etc.

I don't even know if insurance will pay for any of this. They told me a long time ago that they WOULD cover a neuropsych eval, but that was before they started denying all of this other stuff, so now I am wondering if they still will or if I will get the run around again. I strongly doubt that they will cover the developmental medicine center- it is a 4 hour appt with a team of specialists... I can only IMAGINE what that costs since my neuro guy bills out at $1,200 per hour. This is something that is very important to us, though, so we are going to do everything we can to make sure that this happens for her. It still just blows my mind that getting care for a kid with a legitimate diagnosis is this difficult. It really makes me feel for parents of children with needs that are much more profound, and who have to fight for every little thing.

In other news, I am going to meet with an advocate next week to try to convince the school department to place her in a preschool setting. When I spoke with her on the phone the other day, she was pretty much instantly offended that Mairead was not getting more services, so I hope that means she will be an asset for us. I have also recruited Mairead's former Occupational Therapist from EI to do some private sessions. This should be great since Mairead knows and likes Ashley and Ashley will come to the house for the same price I would pay for a co-pay at a rehab center. So, the silver lining to the insurance company denying our request for OT is that we get Ashley to come back!

Side note- when I got home, I found that my mom had let the boys use markers (they are allowed to do this) and that Jack had drawn on Ben's forehead (they are not allowed to do that).

Right now, Ben is wandering around saying, "Daddy? Daddy," while Jack is moving a little chair from room to room. Mairead is coloring upstairs so that her brothers cannot steal her new crayons.

Oh, and I have a Top Donut problem. We were about 100 yards from it yesterday and Mairead piped up from the back seat. "Ice coffee, Mommy?"