Had our meeting with Jacob’s new school!
We had Jacob’s IEP (individualized eduacation program) today. The Kentwood school district cared for him the past 4 years. Aside from a few glitches here and there, we are pleased with how they cared for him. Now it’s time to change to Ken O Sha so we can continue to have his needs met in the best way possible. We love this new school. Everyone is wonderful. It will be a big adjustment going from 1/2 day to full day. Jacob is so tired most of the time. The IEP was at 8:30 am and he was fine for a while sitting at the table and playing but walked out of the room, laid on the floor outside the door and fell asleep. He gave them a classic example on how he can look and be doing fine and have his eyes get droopy and do this in an instant. We are thrilled that his services with Physical, Occupational and Speech therapies have doubled. This is going to help him a ton! We had so much to go over that I won’t go into too much detail here.
Looks like the bus will be picking him up just before 7:30 am so we will have to give him his morning meds here and they will do his first tube feeding at school. He will have an additional tube feeding and another seizure med dose at school. They will have a nurse taking care of those needs which makes me feel way more comfortable then having to train several people. His class size is only 8 children with the teacher and the Para Pro. He did have an additonal aide at the end of last school year but he is starting off with 4 less kids in the class than he had before. They will still be keeping a close eye on him as he does require a lot of additional care. We are keeping our goals that we had for him before. We want quality of life. We want him to feel successful in whatever he does….even if drawing circles makes him happy. We still want him challenged but not to the point of major frustration. They will continue to work on his self help skills too. We are sure they will see some of the behavior issues that we have at some point. We recently added a second behavior med and just doubled the dose so hopefully we will see some results with that. He was already starting to throw a fit as we were leaving the office. I think he will make himself comfortable right away!
They do have a special room attatched to the classroom where he can rest/sleep. It will have music and calm activities. That is going to be wonderful for him since he can easily go into sensory overload too. We went over so much! It’s hard to write just a little bit! It is sad that this is the program he needs now but know that we are doing the best we can for him. They will help us with that. I just hate the reasons why we are doing this. I don’t like to look so far into the future but it’s reality and hiding from it will not help Jacob. This is nothing like the original IEP he had 4 years ago. Then, it was knowing he was delayed and needed some extra help to catch up. In the last year, all that has changed and turned into a nightmare. Something no parent ever wants to go through. Planning a future for a child who has a disease without a cure. A disease that is literally going to take everything away from him. A disease that will eventually take him away from us….. In the time we have with him, we want to create the best possbible memories. I hope he can come home from school with a smile on his face. At least most of the time! He hates “work”! He will come home from school and say “phew, coloring is hard work” and yet he can sit here and color with his sister! Silly boy! I guess that’s a part of him that makes us laugh!
Despite the hard times he gives us, he is such an awesome little boy who amazes us every day. He is a gift. He is ours to love and ours to share. We hope he continues to capture the hearts of many and helps people be more aware of knowing that something good can come out of something so bad.
Sniff sniff…Jacob is starting 1st grade!
