Scott and Bridget met in 1993 and were married in 2001. In September of 2003 we welcomed our first miracle, James. 16 months later we brought home our second miracle, Annie. And in October of 2006 our family was complete with miracle #3, Gracie. Rett syndrome entered our lives when Annie was diagnosed on May 19, 2006. This is the life of the MacDonald family as we juggle 3 small children and battle Rett Syndrome until Gods perfect time when we are cured.

Thursday, March 8, 2012

More Special Than Special

For the past 6 months I have been trying to take Annie to a Special Needs Social Night.  It's held the first Friday of every month and it just so happens that those Friday's we have either had something going on or she hasn't been feeling well enough to go.  Last Friday I was thrilled to finally get her out and socializing.  She's had such a rough time lately and has missed lots of bible school, I just felt like Annie was dying to get out and have some fun.

Annie's helper was over that day and we started trying to figure out what would be the best form of communication for Annie while she was there - her computer, program her sequencer, use eye gaze, etc.  We started reading the flyer because it listed the things that they would be doing that night.  I was caught off guard as I read - "puzzles, games, dance party, pizza" and realized Annie can't do any of these things.  This was supposed to be a special needs social night and even at a special needs function Annie wasn't able to participate independently in anything.  For flippin' sake she wouldn't even be able to eat the pizza - 1 she can't eat independently and B she's gluten free!

Unfortunately the day was pretty bad and as we rolled into the evening it was clear Annie wasn't going anywhere.  I guess, in a way, it was a relief, I didn't have to worry about all that we couldn't do at the social night because we weren't even able to go.  What a let down.

The thing with special needs is that it covers a HUGE stretch of kids.  Ones that are incredibly high functioning that may have a little social or texture issue to those like my Annie - unable to do a single thing on their own.  This reality was all too clear when we were in therapy, Annie would be sitting in her wheelchair crying and I'd be holding up Yes/No cards in an attempt to figure out what was wrong while another mom was walking in with their kiddo skipping and singing and carrying their favorite toy - And of course that was the same kid who's insurance approved unlimited therapy sessions...... but that's another story.

Even within Rett Syndrome there is a huge spectrum, there are kids that speak a few words, kids who have retained hand function, and kids who can walk, even run.  Medical issues vary too, some kids are able to take all their nourishment in by mouth, others who have never  had a seizure, and others who have no issues with their bones.  Don't get me wrong, even the highest function Rett girl leads an incredibly difficult life and regardless of the issues these girls face or don't face this is NEVER an easy road but it's a pretty scary place when your kiddo has (arguably) the most severe and disabling condition and within that condition she is one of the most severe and disabled.  OUCH!

It seems there isn't really a place where we fit in.  On top of the medical and physical issues we are dealing with a kid who is very much aware of everything.  She is a typical little girl in a broken body which means she understands that she is the most severe of the severe and she is very much aware of all that her peers can do, all she can't do and how there really isn't a place exactly for her.

Next month we will once again try for the special needs social night.  God willing we will make it.  I  pray that we will be OK with just the socializing part and not the activities and that maybe we will meet another kiddo and parent that are more special than special just like us.

1 comment:

  1. This is exactly how I feel. 'Special needs' often doesn't even begin to cover 'Amy's needs'. And I've noticed the same thing, that some children with a lot more function than Amy seem to get a lot more therapy. So far I haven't had the energy to really take that on, but perhaps I should. Thinking of you and Annie, as always xx