I'm usually too busy offering support to the rest of you to update about us, but today there was some noteworthy news from Evan's pediatrician.  Most of you know how he's battled reflux all of his life and how he couldn't keep much (if anything) down the first years of his life.  Well, today I learned from the ped. that Evan is probably well on the way to outgrowing reflux. This from the ped. who told us last year that he'll probably never outgrow it. AND this last episode that we're dealing with isn't "spontaneous" vomiting like reflux is, as it's being set off by coughing, so it's 'cough induced vomiting'. Also, he's even further off the charts for tall.  The average child his age grows 4-7 cm per year, and he grew 7 cm this past year. His weight is a bit higher on the charts than it has been, but totally proportionate. Who would have thought he'd be doing so well just 5 year ago?! Happy tears!

The ped. asked me if I'd heard from the geneticist that he referred us to last year.  He was surprised that his staff said there was no record of a referral when I called to check on things in April, and he proceeded to pull out the letter that had been typed and sent last November.  He was shocked that I hadn't been called by the new geneticist yet.  Upon talking to the other ped. in his office, he learned that it's a 2 year waiting period. 0 Okay, whatever…That's not the biggest fight that I have on my hands right now.  Our school's principal shocked me today in coming on board to try and get more support into Evan's classroom. As you may recall, his EA time is mainly being used by a child who started the third week of school and didn't register early enough in the spring to be included in the numbers submitted to the Board. I tried last year and earlier in the fall to have the school do something, but have always been told that their hands are tied and there's nothing they can do. Well, the needy Down Syndrome child is not only taking up the learning support time that Evan needs, but she's also pinching him far too often, and went so far as to hit him over the head with a book this week. Nothing was done, just an apology from her to Evan.  I doubt that her parents were even made aware. So, my son's learning and his "safety" are now being affected, as are both of all the kids in the class. I finally got the principal on board today. Because she has heard from a parent (although she has heard from me before about this very issue), she can now try taking that to the Board. That's at least a first step, and she knows that I'm willing to make whatever phone calls are necessary, too. It's about making a safe environment where kids can have the supports necessary to learn.  Next battle after this?  Getting speech within the school for my child, and getting the school to deal with the toileting support he needs some of the time.

No Comments »