On December 11th, a miserably rainy day, not to mention a bad hair day, Mike and I drove up to our 2nd IEP meeting in 2 months at Tawanka. I really thought that I would be nervous about it, but quite the contrary, I felt composed and I knew that I had data to back up my claims. My boy had been thriving under private therapy - and not just speech, but through appropriate medical care due to vaccine injury also. It seems like a lot of people in the IU either don't understand what that's all about or just flat out don't care. But whatever, I don't spend a lot of time caring about what the people in charge who have "normal" kids think about people like me or how I choose to treat my child.
So with that said, our meeting proceeded without incident. Although the ball had been dropped with regard to Sean not having an augmentative communication device since he had left his first preschool program over a year before, we heard no apology. We were told that things would be set in motion and that we would get the appropriate help for Sean and his communication needs. I said that Sean was learning to speak with private speech, and they agreed to give him one on one speech with a new speech therapist (not our private therapist, but one employed with the IU). They increased his time from 30 minutes/week of group therapy to 60 mins/week of one on one therapy with the new therapist (refer back to previous post as to why the original therapist was replaced). Sean was also given an additional 30 minutes/week with an additional therapist (who has experience with programming and implementing augmentative communication devices) to help get him going with his Chat PC.
Nothing has been implemented yet. It seems that some paperwork took longer than expected to complete and we should be receiving the NOREP and IEP to sign in the next couple of days. I can't comment on the outcome of this revised plan since it has yet to be put into action.
I'm finding that it's best to be careful (especially since people at the IU know I write this blog every once in a blue moon!) about who I name and what exactly I say about them. I would just like to say for now that I appreciate the olive branch that was extended to me via email today.
To give an update on Sean, he had a great Christmas! He opened all of his gifts, with interest might I add. He seems to show more and more curiosity with each passing birthday and Christmas. It's very encouraging to see. Santa brought him some really great board games and a keyboard - he loves the keyboard. His teacher told me that he enjoyed playing it in the classroom, so we figured, why not? We now have a guitar, drum, and a keyboard, with working microphone. Annie, our 3 year old, LOVES playing all of them. She's definitely got a future in showbiz, God help us. Sean has been enjoying singing into the microphone too. It's been a lot of fun to watch him check everything out. He has a curiosity that wasn't there 2 years ago.
Chelation is still going well. He missed a couple of weeks since December, the first time that has ever happened! But I don't get upset about it, I've been taking him religiously since July, and now we're back on track with things settling back into the normal routine. We get new provocation results back next week regarding lead levels in his urine. I'll update that as soon as I get them back. We're working on using scissors, working in pre-k workbooks, drawing shapes, everything we can think of to help get Sean ready for kindergarten.
We are also continuing with almost daily MB12 shots in the butt, we started Valtrex about 2 weeks ago, results seem minimal, and we stopped Monolaurin again since we're using another anti-viral. I'm disappointed, but not discouraged.
Mike and I both have the utmost confidence in our son that he can do anything he's taught. He's really that smart. I wish there was a faster way around this language barrier, but I'm afraid there isn't. We just have to keep plugging away and hoping that he'll continue to come around. As long as we get him to his highest potential, that's all we care about. After all, we love him no matter what, and no amount of progress, or lack there of, could ever change that. We're really proud of how far he's come.
Happy 2009 from the Sypek family! We're looking ahead to another great year of progress and health. I hope to blog much more in the coming year. I still haven't written about Lily, our North Star "assistance" dog, or all the great families I've met through that failed endeavor. I'll get around to it eventually!!
