What's ahead? Surgery and IEP News

Hi--It's been awhile! I update this blog whenever there's news about Tyson, other than the usual...like today when I told him he was too young for a 3DS (nintendo hand-held game system in 3D) and he said, "Fine, I want to go back to China." Mama took deep breaths, then told him we would definitely go back to China to visit someday, and he retorted that we couldn't do that because day is night there and night is day, and if we go to China we would miss sleep. I told him we could sleep on the plane...nope! He quickly stated, "There are no beds on the plane." Anyway...onward and upward!

In one month, Tyson will have a cleft lip repair. When we adopted him, I noticed this red mark coming up from his lip on his right side (looking at it from the left) and figured it was a surgery scar. This is one of his 1,000s of self-portraits.

It wasn't until the night before his first cleft team appointment (after having him for about a month total) I realized...wait a minute! His unilateral cleft was on the left side, but this red mark is on the right! This it not a surgery scar! The surgeon said in fact it was a second cleft. Nothing major, but definitely a small cleft that just didn't split. It's actually part of his lip. So I'm not sure what the surgeon is doing exactly, whether he's removing the cleft mark or lowering it to Tyson's lip, I'm not sure. But it is what is Tyson is having done on the 21st.

I bought Tyson a Cleftline Bear to take to his surgery, and Tyson has affectionately named it "Teddy Duncan" after the pretty girl in the Disney show "Good Luck Charlie". Oh the joys of having an older sister who watches Disney shows! I tried to find a doll of a Chinese (or at least with darker skin) with a cleft, but I couldn't find one, so this was the next best thing, and Tyson was really excited about it. Anyway, here's the bear.

Now on to IEP news... Oh speech therapy, what a tangled web you are! This is going to be hard to make a long story short, but for those who navigate the waters that I do, you'll empathize or learn something new...that's why we blog, right?

Tyson's speech IEP is up in May for his 3 year re-evaluation. At the end of last year we all had concerns about Tyson's cognitive skills and whether or not he had issues with language or cognitive areas, so we planned to do early evaluation in the early part of the school year. Well, you know me...I couldn't wait. So in July 2012 I took him back to our private speech therapist (J) for an evaluation. J had exited him in Sept. 2011, so it had been almost a year since he had private speech, but he continued with therapy at school with his IEP. Basically, as a 5 year old, his scores were now really really low. The details are boring, but I was really concerned.

But here's what happened the day before the evaluation. We got a phone call that Dan's insurance wouldn't cover speech therapy due to so many exlusions! Tyson is now only on Dan's insurance, and it's First Choice in case you need to know. So I called them, they covered the evaluation as an office visit, but after that, they would need to decide if he qualified for coverage. WHAT THE @#$#Q%? I thought my head was going to spin off! Oh but wait, it gets better...

So we find out that yes, Tyson could get speech through J, the therapist BUT...the insurance wouldn't cover it because he was already getting speech therapy at school so they didn't see a need for both. YOU HAVE TO BE KIDDING ME! Yep, true story.

So, I talked with his teachers, and we decided to just hold off on testing until the IEP was up in May to ensure that Tyson would get help at school. However, they wanted to see J's evaluation, and I have always shared all information, no problem. So I called the hospital, signed papers, made phone calls....got nowhere.

Last Friday Tyson had a dermatology appointment (Tyson came home from China with mollescum and it never went away), so I conveniently went over to the therapy office and got the evaluation copy. J did a FABULOUS job on the evaluation, and I agreed with everything. I gave the school a copy, as they had been trying to get it as well.

Long story short....the school can use J's evaluation because the scores do qualify Tyson for an IEP in Language. We are going to initiate testing, and because he's 5 we will have cognitive testing done as well. I am soooo relieved that he will go to Kindergarten next year with an IEP!

That has to sound strange to most parents...glad your child qualifies for an IEP? As a teacher, I know that the worst feeling is trying to get extra help and services for a child that is low, but not low enough for services. I know Tyson is right on that line in many areas and is one of the big reasons we didn't start him in Kindergarten this year.

Now I need to brag on my daughter for a moment. She has been playing "school" with Tyson every weekend. She is fabulous with him. She has set up an incentive program with stickers, reads him stories and makes up comprehension questions and records his answers, draws out math problems, and then writes me a report card! It's incredible! She has a gift for sure. Tyson still struggles with learning his letters, but it appears that he has really good number sense! I started noticing this a few months ago.

I will keep you all updated on the surgery and the IEP process. I know how confusing it all is, and when we help each other, it makes it so much better.

I hope you had a Happy Thanksgiving! Let the Holiday Season begin!
Jolene