Wednesday, August 31, 2005
OK, rather than discuss everything in one blog entry I will break things up. Last Tuesday (August 23rd) we brought Mikey to AHRC in Old Brookville to take the bus to Camp Loyaltown in Hunter, NY. This is about a three hour ride. Although Michel had doubts that we would get Mikey on the bus, I was optimistic. When we got to AHRC, there were just too many people around and Mikey was just too frightened to get on the bus. I tried to carry him on but he was struggling and crying. So Michel turned out to be right and we had to drive him up to camp. We did get to meet Mikey's counselor (each camper has their own counselor) so that was nice. He is from Ireland and travels around the world doing things like being a camp counselor for disabled children.
We dropped Beth off at the grandparents' in Brooklyn and drove up to Hunter. Mikey loves the car so he just sat back and enjoyed the ride. I was worried that we wouldn't be able to get away once we got up there, but everything turned out fine. Mikey saw the pool and that was it. We handed Mikey to the counselor, dropped his bags off, and said goodbye. No tears from Mikey at all.
The one good thing about driving Mikey up was that we got a chance to see the camp. It is very nice. They have a big pool and a playground right by Mikey's cabin. The counselors sleep in the cabin with the kids and the doors are alarmed so that if someone tries to walk out, everyone is alerted. There is a counselor awake during the night to keep an eye on things. As one of the administrators of the camp told us, "Camp Lose-A-Kid" probably wouldn't be very popular so they make sure that all the campers are safe at all times. Mikey's trip lasts from Tuesday thru Sunday so this gives us all a little break.
Saturday, August 13, 2005
"The human heart was not meant to beat outside the human body and yet, each child represented just that--a parent's heart bared, beating forever outside its chest."
-Debra Ginsberg, Raising Blaze...Bringing Up an Extraordinary Son in and Ordinary World
Thursday, August 11, 2005
Mikey has been attending the Rosemary Kennedy School for the summer. We had hoped he would be able to stay in Plainview for the summer but that didn't happen. As it turned out, it was a good thing that he went to RKS because we found out how much we hate it. A couple of weeks into the program, Michel discovered that Mikey was not getting the number of speech, physical, and occupational therapy sessions that are in his IEP. When she spoke to the principal, the response was that they can't be expected to provide the full compliment of services in the summer because of staffing problems and that this problem has been going on for 28 years. Of course, no mention was ever made of this to us when we were looking for a school. Most importantly, providing the services in the IEP is not optional. RKS must provide the services as defined in Mikey's IEP. We also found out that the computer in Mikey's classroom was broken and that the teacher who fixes them is out for the summer. Working on the computer is something Mikey really enjoys and it is a great learning tool for him. When Michel called the principal about the computer she was told there was nothing that could be done. Michel called the office of our state senator Carl Marcellino and amazingly there was a brand new computer in Mikey's classroom the next day.
All of this convinced us that RKS was not the place for Mikey and Michel started looking for another school. First, we went to look at The Center for Developmental Disabilities in Woodbury. It was a very nice school... very quiet and not far from home. The kids seemed very well behaved and on target. After seeing Mikey they told us that he wasn't right for their school. This made me wonder because it seemed that since Mikey could be mainstreamed if his behavior was better, why does this school even exist? It seems to me that most of the kids at The Center could be integrated in regular classrooms if they can sit and attend and follow directions.
With The Center out of the running, Michel went to look at AHRC's school and she liked it. The school isn't straight ABA but Michel thought it would be a good fit and the teachers at AHRC thought Mikey would do very well there. They are more academic oriented than RKS so we look forward to Mikey learning to read. Now it is just a matter of talking to our school district and getting Mikey's IEP updated which should not be a problem. Michel and I are both very happy that Mikey will not be at RKS much longer.
AHRC runs a summer camp called Camp Loyaltown in Hunter, NY and Mikey will be going there in two weeks. This is a sleep away camp and Mikey will be gone for 5 days. Since we have the medicaid waver this is being paid for by the state. It is going to be very strange not having Mikey around. We still don't know what we are going to do with ourselves.
I should add that Mikey fell at RKS and got three stiches in his chin. His teacher tried to grab him but he wriggled out of her grasp and banged his chin into a bookshelf. They had to sedate him in the ER to get the stiches in and we were able to remove them at home while Mikey was asleep. It is healing very nicely.
References: Rosemary Kennedy. Ms. Kennedy (the sister of Ted Kennedy) was lobotomized by her parents because of behavior issues.