I felt now would be the best time to give an update on where we are. I won't go into detail of what we've gone through to get here but just know we are here! :) We have been in the Tampa Bay area for 3 months now.
Altogether as a family we are still adjusting to a new area. Things are different across the board here. The older kids love their new school, we are still in love with our new house and beautiful neighborhood. It's the type where your neighbors wave at you, you can ask to borrow an egg, and all the kids get along great. I have been out of training for some time at my new job and I am doing very well. My husband Lonnie is in his 2nd semester and doing wonderful (finished his last semester with a 3.8 GPA!). There are times where I just want to move back to Jacksonville - partly because things are more comfortable and familiar there, and also because I do miss family and friends. However, when I see how far we've come with Noah's services I know at the end of the day we made the right choice for our family.
Noah has been off of his Seroquel medication for over 2 months now. He is doing surprisingly better. His psychiatrist wanted to make sure it was out of his system before tapering him off of his Depakote as well. His plan is to clean Noah's system of all of his psych meds (excluding Clonidine) then adding just one med in its place at a low dosage that will cater more to his autistic needs/symptoms without him being on an excessive amount. He thinks that the amount and type of meds he was on was actually inducing bipolar symptoms that truly aren't there. He ran medical testing on Noah (blood work, EKG, etc.) and all looks normal so that was good to know. We have ABA therapy starting on November 14th for him. He had his PCP appointment today so he will soon have appointments for speech therapy, OT, PT, and his referrals to the neurologist, geneticist, and Autism Center (he will get a full autism evaluation to find out officially 'how' autistic he is). I love the hospital altogether, everyone there is so awesome, and the services and possibilities seem endless! It also helps having 2 insurance plans for him. They are willing to pay for Depends custom to his size, custom stroller for Noah, and a harness for the car to make riding with him safer. I am also trying to get him set up for his 20 hours of weekly respite hours he qualifies for. I still have some way to go but I do see good things just in sight service-wise.
Noah's school ... now that's a totally different story. I do want to say though that I still believe their school system is better than what he was in. I knew that I wasn't going to walk in and all was going to be how it should. It's a process because it deals with an IEP and a public school system. Got it. HOWEVER, I didn't realize we were going to have so many issues in the beginning over things that in my mind shouldn't matter to them. For example: transportation. In Jacksonville, he was picked up/dropped off in front of our house. It was a special needs bus with 2 bus aides and a seat belt harness. Evidently, that kind of transportation is a commodity here. They set his 'bus stop' 0.7 miles from the house which normally wouldn't be an issue but he gets out later than our other kids so Lonnie would be walking almost a mile one way with all 3 of our children, one being our son with Autism who has a tendency to dart off (has limited boundaries of danger) and low muscle tone who has a note from his previous neurologist stating he shouldn't be required to walk more than 100 ft at once. Then I find out it's not a special transportation bus, he will be placed on a mainstream bus with only 1 aide and no harness. I have 3 concerns: he will hurt someone else, someone else will hurt him, or that he will be bullied. Needless to say, Noah has yet to ride the bus and it is eating up our gas like crazy.
The school placed him in a mainstream school in an EBD (emotional/behavior delayed) self-contained classroom. Same thing he had before. I was really frustrated but I knew a spot at a local private autistic school wouldn't open up for some time plus I understood that was what was on his IEP from Jacksonville so they had to honor it. I met with the teacher before school started and she agreed he needed to be in an ASD classroom. We have immediately started addressing this issue to get him into an ASD class, correct the transportation issue, and get OT going on the school level. I am hoping to have an IEP meeting by next week. Whether the school board realizes it or not, we will be having one. His teacher did inform me today that it will be quite awhile to get him moved/placed. The best news is that the autism school somehow moved him up the waiting list and he can start November 1st OR earlier if his teacher is willing to work with me since I can't withdraw him officially from school until October 31st. It's an ABA Academy and I am really looking forward to it. Now I won't lie: if they get his IEP going and can me into an exceptional center then I will go for that but that doesn't look like that will happen. And to be honest, I am so tired of fighting for him an education. My insurance and his scholarship will pay for almost all of his tuition to the private school and things just are simpler. I am getting plus some on the services the school would give through the local children's hospital! The staff just seems way more gung-ho to wanting to help Noah!
Well, this is us and how we are doing. I plan to try to do a Wednesday nightly blog to update!
