I got to speak with the advocate from the Autism Society first, right before the meeting, and she said that she had spoken to the district autism specialist for the schools and that he had some good things to say about Griffin's goals. So she didn't feel that there was anything to be worried about as far as Griffin losing services.
The resource teacher (RT) spoke most of the time as she was the one who was reading all the findings of the tests that had been run and there were lots! The Vineland and CARS and I cannot recall the others. They didn't have my copies ready to send home with me today but as soon as I get them I will post again and update on what was done. So, his teacher was there (Mrs. L) and the principal (P), the autism specialist (AS) and Griffin's case manager (Robert).
I set up the tape recorder right away and nobody had a problem with it. The meeting went smoothly and I found out a lot about how he behaves in school, how he must have his routine in school (big surprise there!), how he responds to his peers, how he needs a great deal of prompting in all that he does, he is superior to his peers in reading and spelling but delayed in reading comprehension, he is a happy child all in all and likes all of his peers but does not play with or parallel to them and there was some question as to whether he even notices them or not. Because Griffin has moments when he does not seem lucid but instead seems completely absent in thought and response the AS and the autism advocate from the Autism Society brought up that I should seriously consider having him tested for absent seizures or is it absence seizures? I have never heard of them but I am calling his doctor on Monday and making an appointment to discuss having the test run. Apparently, according to them, I would have to keep him up all night long and then take him in for an EEG when they will try to induce a seizure with lights and sounds.
The teacher Mrs. L did not have a lot to say throughout the entire meeting until the end when she did respond to me asking that there be more communication between us as to how Griffin is behaving, playing/or not, how he is doing academically, how he is eating (lack of eating could contribute to undesirable behaviors), and just overall whether he had a good day or not. I communicate with her and it is only fair to Griffin that she do the same. The autism advocate had so many great ideas and all of them were so useful and applicable. They were all geared to help Griffin to be more independent and to not be reliant on verbal or human prompts. Since the IEP will follow him into the 3rd grade it is important that he become more and more independent.
Homework!!! I got what I asked for and that was to be able to decide what is too much for him on any given day. If he is out-of-sorts and having an off day then maybe he is not able to do all his work or any of it for that matter. It will be up to me to decide and that is the way that it should be because I have tried everything possible to help him and nothing has helped him only made things worse. He even stopped responding to positive rewards and taking computer breaks and yes, I tried a visual schedule and a timer too. What a huge relief that is for both of us!
That is enough for now. I will update as I get the papers back and have more details from the IEP. I had my first Hippotherapy today (horseback riding therapy) and it was wonderful! My legs are going to be sore, it takes a lot of muscle work to stay erect on a horse and not fall off. It was amazing though. My horse's name is Mr. Pumpkin and he is a Halflinger, he looks like a small draft horse....gorgeous!
Life is not without its challenges but also full of blessings. When I hear my son's laughter all those challenges temporarily fade away: and when I think of the unconditional love that we share, I realize what a precious gift that has been bestowed upon me in this lifetime in which I had never imagined would be so magnificent. The one thing that I am sure to tell him every day is that I love him and that he is exactly the way he was meant to be created..He is PERFECT!
3 comments:
Lora, they are called absence seizures, my son has epilepsy, his seizures are full blown tonic clonic seizures. The EEG are electrodes that are glued to his head and monitors electrical impulses in the brain, they stimulate rapid light flashes to see if he is photosensitive to light. Glad you got what you needed from the IEP meeting xx
I am SO happy for you! You sound exhausted and I hope that you are able to have a relaxed evening and weekend.
Do you notice what they're talking about (possibility of absence seizures) at home? If not, I would seriously weigh testing him. Just my humble opinion.
Best to both of you! xoxo
Lora, Oliver had the EEG a couple of years ago now as he was having absence seizures and has had 3 tonic clonic seizures (grand mal) since age 11. Thankfully seizure activity is controlled well now with anti epileptic medication - he has not had a full blown seizure for 15 months. I have not heard of a hospital inducing a seizure with lights and sounds, that isnt right. In the UK they use Melatonin to induce sleep (if the child is non compliant like Oliver) but even at a high dose of sleep med he STILL didnt fall asleep!! he did tolerate the electrodes on his head for a little while but it was not enough to get a reading. They did the photosensitivity tests (lights in eyes) and he had something going on there so I have to monitor closely his video games! Ask me any questions xxx
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