Wednesday
March 3rd, 2010I had Warren’s placement meeting for preschool yesterday. Two hours after it began, he is officially ready to start preschool on his third birthday if we so choose. It went as expected… paperwork, followed by more paperwork, followed by a little bit more paperwork. The big picture of it is that Warren qualifies for special education services under the multiple disabilities “label”, if you will. The recommended therapies for him via the school system are PT once a week for 30 minutes, OT twice a month for 30 minutes, Speech for once a month for 30 minutes, Visually Impaired therapy once a month for 30 minutes, and Nursing services daily (as a nurse would have to administer any meds and give him his G-tube feedings).
I agreed to these limited amount of services for two reasons: one, Warren will not be in school for five days a week from 8-2:30 and two, we are able to continue with our private therapies. He obviously cannot have therapy every day like he does now if he is also attending school, but it’s workable. I did express how I didn’t think that once a month served a valuable purpose, but it’s hard to argue when I honestly don’t think he’s even going to school in April. I can change his services whenever I deem necessary, so with where we are right now I am fine with the end results.
His placement is in the developmentally delayed preschool classroom that we visited several months ago. There’s a teacher and assistant with no more than 6 children. Again, with where we are right now with his seizures, he’s not going anywhere. We do head up to Duke next week, so I pray that in 6 weeks we are in a different place with those. Regardless, most of my concerns revolve around giving up some control. When Warren can’t tell me anything that happened to him that day, I have a really hard time just dropping him off and hoping he’s taken care of. How do I know that the therapists are really trying with him? Is the nurse rushing through a feeding b/c she has other things to do? Did anyone console him during a seizure? Is he kept in a safe position after he eats? Not sure that I’m ready to let someone else be responsible for his well being right now.
Plus, we’re on a horrible schedule for school. He sleeps too late in the morning to be at school on time, plus he gets his very important seizure meds in the morning which would fall during the school day. I really don’t want him getting those meds at school. So again, I’m just putting it on the back burner for right now until we get the MRI results and see where we’re going from here. I’ll keep you posted.
I made it through the entire meeting without really getting irritated which was nice. The only thing bothering me is when I had to fill out the school forms after the meeting was over. She was showing me which parts to fill out and when we got to “Siblings”, she crossed it out and said quietly “don’t need to do that”. I was mad at myself on the way home for not saying something. I know she doesn’t need me to put the boys names down for obvious reasons, but I should have said something because in our home… Warren does have siblings. I’m sure they got the “remember she lost the twins so don’t say anything about them” speech before I walked in. Just for the record, it’s much better to acknowledge a tragedy such as ours versus pretending they never existed. The irony? She was the social worker. It wasn’t a big deal and in no way do I fault her, I just should have said something. Moving on…
Otherwise, he continues to have one or two of the BIG clusters of seizures each day. I never know when it’s going to be, but they are frightening to me to watch. The ones where he cries are heartbreaking and sometimes they’re couple with this almost panicked sound like he’s trying to get out of it but can’t. Uh… let’s pray we can catch one on video to show our neuro next week. Hard to do, as there’s no warning it’s coming and it’s over before we can get the camera.
He did lose his dinner last night which included sweet potatoes. Lovely. He lost his dinner once last week when Craig was gone, too. Twice in one week is a lot better than once a day, but we had gone for several weeks with no episodes. He keeps us on our toes… always! Time for those mornings meds.
Have a good Wednesday.
Amy
