We have just completed our triennial IEP meeting with the school district to decide on best placement for L in kindergarten. We had the official meeting last week but have not signed anything as I need plenty of time to review and modify the IEP agreement in order to get everything just right. As usual, the same cast of players attended the meeting: his teacher, the principal (who showed up late and looked as if she would rather be elsewhere), PT, OT, ST and the school psychologist. Surprising to us, his PT informed us that he has meet all the goals set out at the beginning of the school year and would like to discontinue PT in the upcoming year. She said someone will occasionally monitor him but does not think he needs any more physical therapy. This, in light of the fact that during the meeting, L fell smack onto his tummy as he was racing back and forth in the classroom right in front of everyone. I admit, he has come a long ways and has met all the goals as outlined in the previous IEP. Rather than eliminating PT altogether, I hope to set some new goals, like not falling smack onto his tummy while sprinting for his life; or, being able to jump up and down on a trampoline like other kids of his age. Rather than a motor issue, I feel as though he has no depth perception. I so wish I can see the world through his eyes.
We plan to continue on the OT and ST, the two areas he is very behind in. The school psychologist also suggested that we transfer him to another school within the same school district which provides more life skills. He has been attending an "autism program" for the past two years for pre-K because that was the diagnosis he received when he took the ADOS test, when they evaluated him at UCLA for a clinical trial study and at UCI for another autism clinical study. However, because he is more delayed than kids who have "straight autism" per the school psychologist, he would benefit from a program that focuses more on life skills. He is more behind than the other kids in his classroom and I knew it would be due to his Dup15q diagnosis. A few weeks ago, Gabe, L and I went to Studio City for Stephanie's Day at CBS Studios. This event is founded by one of the CBS executives who has a daughter with autism. Many educational, therapy and medical vendors had booths for families with autism. We spoke with a representative for Villa Esperanza school, a non public school in Pasadena that serve special needs children. I hope to get L transferred over there eventually and hope the school district will agree it is the best fit for him. Of course, I am prepared for a huge fight to get this done. We will tour the school next week and see what steps we need to take.
I will miss his current teacher and the program which seemed so well organized and the kids seemed to be really well treated by the staff. But, I know L needs to go to a program that will serve his needs the best. I am glad he had the experience in his present school but I also wonder if he wouldn't have benefited from the new program a little bit sooner. Granted, it is clear across town and we will most likely be busing him. I know, Gabe and I vowed we would never put him on those buses. But, recently the laws have changed and bus safety has been improved. (Link) We plan to take him to school in the morning due to his new onset seizures between 7-10 am but plan for him to be brought back home on the bus. I know L is going to love getting on the bus, he used to cry and fret that he was not getting on one with all the other kids. I always like to make small rapport with the teachers everyday and pick up just a tidbit of info on how his day went. I think it also sends a subliminal message to the staff that the parents are really involved with this child and that they had better not mess with him. But really, who knows what happens inside the classroom, there are no camera.
Recently, the Dup15q Alliance published a paper on seizures. seizures and Dup15q
We have increased his keppra dose twice with some seizure control but after a few weeks, they seem to come back. I hate that there is no direct remedy and every med is like a trial and error. I hated that I was giving him keppra everyday with no seizure control for about a month. Why the hell am I giving it to him for anyway?? One morning, as I turned for 5 minutes to use the bathroom, I found him in the bedroom slumped over next to the trashcan seizing. This made me so so sad and mad. I hate to see my baby like that!
