As a parent of a special needs child, life gets complicated. I never really anticipated some of the things I'd be doing. Let's see, things to know...
Clothing: I have to find pants with an elastic waist so Sam can be independent and pull up his own pants (Target & Walmart for those who want to know). Wednesdays I have to remember to put him in snapping pants so he can practice at therapy after school. My next purchase will be a "button aide" so he can start buttoning his own shirts. Shoes are a world of "purchase and return"...I can usually find the right size but either it:
1. isn't wide enough to accommodate his braces,
2. the insert doesn't come out to accommodate is braces or
3. he just plain doesn't like the shoe.
I used to love shopping for his shoes, at one point, I had 80 pair and they were the coolest shoes around....not anymore!
Insurance: I used to call Aetna at least once a week to check on a claim or a benefit which is not a big deal. The real problems come when I have to start fighting for things. We are in the middle of an appeal right now trying to get Aetna to pay for Sam's $6500/month therapy. We will hopefully find out soon if they will pay for it. I must admit I've thrown in a few swear words for good measure!
School: Education is a challenge in our society and gets even more complicated with Special Education. Sam's been in school since he was 2 and he's done well. Any child with a disability that attends public school has to have an IEP (Individualized Education Plan) which consists of goals and measures of progress. The IEP team consists of parents, teachers, district representatives, education counselors, school psychologists and therapists. You sit around a big table (with bagels and cream cheese....hey, I am NOT above bribery!) and discuss the educational needs of your child. I've never had problems at any of our IEP meetings since Sam usually get what he needs.
Here is the problem, MIDDLE SCHOOL. This is not just a problem for special ed kids but for all kids in general. I can't think of a more scary place to be than middle school. Todd and I began to think that regular middle school is not a place where Sam will be able to cope and learn. We started looking for a special needs private school and let me tell you, they are tough to find. We visited one, the Joseph Sams school but it was not the right fit for Sam.
I was looking in the Atlanta Parent magazine and it listed a brand new private school, Clearwater Academy, in Tyrone, Georgia (40 minutes away). I called and scheduled a visit. I went with my friend, Jenna, who also has a special needs child, and we toured the school and visited with the director. This is their first year and were opening on August 18th. They already had 80 applications just waiting for a spot. I rescheduled a visit so Todd could see it and we also took Sam with us. We toured the school, met the owner & teachers and Sam got to spend about 30 minutes in a class. There are only about 10 kids there right now. Sam is quite talented at making a good first impression. He likes to shake hands, introduce himself & us. They were all quite taken with him. We discussed what our options were, trying to decide if it's even worth submitting an application since there was 80 of them waiting ahead of us. We asked what the time frame was for getting in once an application was submitted and the director says, "Well, he won't be able to start tomorrow, but how about Monday?" Needless to say, we were shocked! We were hoping for a spot for next year or to be on the waiting list. My plan was to go "over the top" with our application; photos, letters of recommendation, a DVD. Whatever it took to make Sam stand out was what I was prepared to do. Sam seems to do a fine job of standing out on his own.
The best thing about this school is that they do the majority of the therapy at school and it's included in the tuition, thus enabling Sam to be a "real" kid after school. A little homework then he can play. We've never done that before. The other issue is that since the insurance isn't paying, he'll get the therapy he needs. It's been a blessing to have found this school. Thanks to the Easterly Scholarship Fund (aka G'ma & G'pa)!
I then had to get up the nerve to tell Sam's teacher, the one he's had for going on 5 years, that we were withdrawing Sam from school. I was crying and so was she. We love Ms. Clarke and she's been a big part of Sam's life. Sam's last day at Chapel Hill Elementary will be on Friday, September 5th. We will miss everyone at CHES.
Saturday night I hosted my first ever Fondue Night with some friends. There were 12 of us at the soiree: Ryan & Cindy, Donna & Stephan, Kim & Todd, Thomasyn (missed you Brent), Sara & Drew, Danielle (missed you Nate), Sherman & Jennifer (congrats on the new calling Bishop!).
