Well, that's another IEP in the books. So how did it go? It was long! But, I think this was by far the best one yet! I went it alone. Yes, you read that right! ALONE! I didn't bring any advocates or a lawyer. I decided I would give it one last shot before I got a lawyer involved.
This time I did things a little different. I always get so nervous and forget half of what I want to say. We start talking and I get twisted up or off subject. This time, I did a lot of research on rights and laws. I talked to parents with kids like mine and with people who work with kids like mine. I got doctors to write letters. I got people who work with Blaze (outside of school) to write letters. I put all of that in a stack. Then the night before, I set down with a notebook and wrote everything that I would like to say to the school folks, if they were setting there in front of me. I then took my stack and my notebook notes and put them in a binder. During the meeting I let them start. I listened to all of their updates on Blaze . Once they turned it over to me, I pulled out my notes, handed out my letters, and I read word for word what I wrote the night before (I let them know ahead of time). I asked them to listen until I completed all 7 pages and then we could discuss them. I set through all their updates and did not interrupt, so I asked and expected the same in return.
In my notes, I broke down all of my concerns into categories and explained each one in great detail.
Health, safety, feeding, hygiene, and communication.
Under safety, We discussed some incidents where Blaze pulled away from his para and was put at risk( outside, in the parking lot a few times, in the halls). Blaze has epilepsy and food allergies and was being left with people in the lunch room, at pickup, and drop off who had not been trained. This put Blaze at high risk. In the event of an emergency, time is the most important thing. So I also requested a walkie talkie to be with Blaze at all times especially outside on the playground, in halls, etc Just in case. These were just some of the things under safety.
Under Health, We updated his medical. We discussed Blaze's recent medical scares and concerns. We discussed more training for staff. We added a seizure chart to be kept on him daily of any seizure activities. In the event he has a mild one or a serious one, we discussed how it would be handled.
Under feeding, We discussed Blaze's feeding schedule and needs. We discussed who would be responsible for feeding him daily/ making him eat and following the autism center's feeding program. We added additional feeding time for him. I asked that he not be fed in the cafeteria. I requested a feeding chart of his daily intake. We talked about his nutritional needs.
Under hygiene, We discussed who would be handling his diaper changes. Also, we discussed potty training and that I wanted them to carry him to the potty daily to practice ( like we do at home). I asked for a chart to be kept on all diaper and potty events. We discussed his GI issue.
Communication...I saved it for last. Why? Because I knew this would be the one that would rattle feathers and it did. This is a tough one and one of my biggest concerns. We discussed how I felt that Blaze was being restricted and not getting an appropriate amount of communication. He has a wonderful teacher for the deaf but she is only there about 3 hours a day. The rest of the day he was left with little to know communication. He has a para in his classroom who was in his class last year and she knows a good bit of ASL but she doesn't have time to just focus on Blaze. They tried to get me to believe that she was his designated para, but she wasn't . That was a lie. She's a CLASS para. They tried to get me to be OK with that, but I wasn't. She done what she was told and that was be a class para. She was doing the best she could to learn so that Blaze could have more communication but its hard to learn while chasing 8+ other kids around the classroom. Plus these kids are in the autism classroom for a reason, they have special needs too. Under this one, I explained and pointed out things I saw when I observed the classroom Blaze is in and I pointed out times that Blaze was deprived of communication and lost time that we can't ever get back. For example, the teacher read but wasn't fluent in ASL. They let him work on the computer but without someone signing to explain to him what he needed to do. He had no idea. He had to guess what was expected and that wasn't right. Plus they had put him in front of a computer with his back to the class. Had he had a seizure they probably wouldn't have even realized until he fell out of his seat. No one other than the TOD is fluent in ASL ,so I couldn't and wouldn't agree that it was a fair and appropriate education. Also while viewing the classroom, I had concerns because several of the kids had outbursts....severe ones, throwing things, wrecking the room, biting, etc. I was concerned for Blaze's safety as well as the distractions since Blaze is not a behavior problem. It wasn't the teachers fault. She's a good teacher but she needed more help. Also, another communication concern I had was the lack of communication from his school therapists. I can't work with him at home, if I don't know what they are working on at school.
Needless to say, we had a lot to discuss and it took nearly 4 hours. I ended my notes with, "If you don't agree with the things that I'm asking then I want an interpreter put in place immediately while I take the appropriate steps to have Blaze moved to a more appropriate and less restrictive placement". I had also mentioned the special needs schools that we are considering and I knew they didn't want to go there, because it would be way more costly for them. The deaf schools can't take him (not that I would send him there) because of his medical, so a special needs school that is medically equipped is the only option. I wasn't rude. I was firm. I didn't ask for off the wall things and I had a good reason for every request and doctors to back me up. They even tried to tell me that Blaze is not ready for an interpreter, but I had that covered too! I've been taking him to work with some interpreters over the last year and they disagree with the school, so I got that in writing too! I told them saying he is not ready for an interpreter is like saying he is not ready to talk. I told them that almost none of the kids in Blaze's class talks (non are deaf) but that doesn't stop the teacher from talking to them. I asked them if they would be OK with it if the teacher didn't bother talking to those kids since they don't talk yet? Then I said, well that's what you are expecting me to be OK with. My son won't learn to talk fluent if he doesn't get exposure at home and school. He deserves all day, every day communication just like every other kid gets.
Here is what I wanted...
1. Blaze moved to the mild/mod room.
2. More communication from everyone who works with Blaze. A communication notebook kept between teachers, therapists, and me.
3.I wanted the para made to be his 1:1 so that her focus is only on taking care of Blaze and meeting his needs (I had been told that would be impossible without a lawyer but I was going to give it a shot). I felt she would do great with more training and could be the main one to handle the communication, safety, hygiene, feeding, etc Plus because her focus would be on Blaze and not a whole class of kids she could be learning ASL from the TOD, while she is there 3 hours daily. In the event of a medical or allergy emergency she would be right there with him and could be trained how to respond. Time is the key!
4. A walkie-talkie of his own for any emergencies.
5. A chart kept daily on what therapies he does, any seizure activities, potty time, feeding, what specials he attended, behaviors, concerns, etc
6.The classroom set up more deaf child friendly (ASL charts on the walls, captions on the TV, interpreting of any and all materials being presented ( even on the computer), etc
7. More training for the staff on working with a child with vision and hearing loss because he is so unique.
After a lot of back and fourths, I got everything that I wished for and more! I know eventually I will probably have to move Blaze to another school but for now I am happy where he is at.
