Sunday, May 3, 2015

Falling Through the Cracks

We fired our paediatrician this year. Her ruining our referral for an assessment at Sunnyhill did it for us.  When we approached our initial appointment with the new paediatrician last month, I tried to gather up all the necessary information so he could be caught up on Rhys. I didn't want to have to go through tons of paperwork or do unnecessary testing that would put us back by several months. I already feel we are behind! So I got my Rhys Binder together and went through my last notes to see what would be the most important to mention. I never know if I will have to spend the time trying to convince the doctor of our need for further assessment or if our words will be enough.

Prior to the appointment, I asked Rhys' teacher and the SEA in the classroom if they could put together a letter for us to give to the pediatrician. It was handed to me on the last day of classes before Spring Break and put together with help from the Special Education Coordinator.  It was an interesting letter. Most of it I already knew about, but some threw me off, and some parts made me actually laugh out loud.

It mentioned how he "presents physically, socially, and academically as being younger than his kindergarten peers", specifically pointing out that he can do and say things that "are innapropriate or that his peers find odd." (he does not understand personal space, and likes to dance and hit his bottom---that makes me laugh, but it's uncomfortable to people.)  His speech is still very unclear and he is learning at a slower pace than his classmates.

There was a noted incident where the class did a skipping activity and he couldn't do it and he fell. The ability to skip is a skill that he has only gained last year in preschool, so he has not mastered it yet; he is still working on his balance.  It was pointed out that his reaction time to break his fall is slow, so when he stumbles, the fall can be quite hard. I hadn't thought of that before, but it makes sense.  It explains all of the times he's cried and cried over a "simple" fall--it may not have been so simple for him.

What made me laugh was when his preschool teacher described him as "oddly optimistic". What does that mean? I guess he can be a bit more enthusiastic than necessary.

What frustrated me was the I have two pages of how Rhys is different than his peers and is struggling, yet no teacher or SEA has talked to me directly about it. I have tried to open up a dialog with them though, but things haven't gone far. Yet I read: "the challenges in these areas are directly effecting his progress academically and his ability to interact socially with peers in a meaningful way." So why are they not meeting with me about it?  Why have they not brought up ideas or suggestions?  Why have they not done their own assessment?

Just before Christmas break, his teacher mentioned about him "falling through the cracks." How true that is.  He is behind in many areas, but he doesn't need an aide in the classroom all of the time, yet he does need more one-on-one attention.  I can see how he misses out when they don't know where he fits.

When we met with the new pediatrician, he used those same words.  That it seemed that Rhys was "falling through the cracks."  He is gaining skills, but behind in many, but not so far behind that he obviously needs help. It's hard for me. I hate to think that instead of Rhys getting the help he needs, he may be seen as disruptive or a troublemaker by the teachers when he gets older.

Our new pediatrician is going to talk to Sunnyhill and see about us getting an assesment done, but he wasn't too sure if there was a cut-off age. I didn't see one online, so I hope there isn't.  It would seem so unfair if they didn't accept his case, since we were on that wait list at age five and still in preschool, and it was the old pediatrician's fault we weren't anymore.  It also would seem strange to have an age limit since some of these delayments come out more in the first years of school.  Hopefully we will hear something soon.

He also mentioned a group called TIDE BC. They are out of BCCH and work along with Genetics. The goal is to see if therapy would help offset some delayments in children, decrease that gap, and maybe increase some skills. A lot of it went over my head during our appointment, but when I looked them up online, I felt some hope and excitement. Wouldn't it be wonderful if this team of researchers and specialists were able to find some sort of treatment that would help Rhys?  We haven't heard from Genetics yet though, regarding any test results, so I don't know if they even found anything or were even able to get anything from the bloodtests. (I can only assume that silence means that there is nothing to discuss.) The doctor wasn't even sure if we would be a good candidate for TIDE BC, but hopefully someone will find our case interesting enough to work on!

It's hard when you have teachers and doctors telling you that your child is falling through the cracks and getting further behind but they can't seem to do anything about it.  It's frustrating and disheartening. But I am trying to be hopeful that we will get somewhere with this new pediatrician. I know that there are options out there, at least.


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