Wednesday, April 8, 2015

The trials and tribulations of raising Miss Tera...

There are so many things that I have wanted to post about in the past few weeks, including World Down Syndrome Day that has now come and gone, but I just don’t have the down time I once had.

One of the things that has bothered me the most, caused a lot of heartache and frustration, and is the hardest to resolve, is Tera’s behavior struggles.  Anyone who has met her can attest to her sweetness, and also to her inability to stop moving.  And while she is still incredibly sweet (most of the time), she has consistently struggled with sensory issues that have plagued both her and us.  When she was younger, we exhaustively joked about her nonstop movement.  As she has gotten older though, it has turned into more of an issue, and not just with her behavior, but with her safety and the safety of kids around her as well.  

I absolutely don’t want to prevent her from playing with other kids, but when she is around them, Tom and/or I have to constantly hover; bringing a new meaning to the term helicopter parents.  In the physical sense, we absolutely are because we never know when something will trigger her to hit or push another kid.  The truly confusing part about this particular behavior, is that it is almost impossible to predict and it rarely seems malicious.  I sometimes dread the times we know she will be around other kids because it’s completely exhausting physically and mentally to worry about what she will do.  I’m also terrified that at some point very soon, if not already, there are kids that won’t want to be around her because she may have hurt them before.  And just the thought of that shatters my heart.  

We have tried so many things and some work, although inconsistently, and the situations vary so much from place to place that it’s very difficult to pinpoint what might work and what might not.  Or as I said before, what might cause the behavior.  

Every night Tom and I anxiously check her backpack to see how her day went.  When it was a good day, we are elated! We show her the chart and make sure to give high-fives and praise her for such a great job.  But when it’s not so good, I just get disheartened all over again.  My heart breaks for her because I know many of the things she struggles with are a product of other factors.  Restless sleep, sensory issues, communication challenges, and constantly having to work so hard for everything she does.  Her stubborn streak was going to run wild no matter how many chromosomes she was born with, but the fact that that extra one is there doesn’t help.  

In the matter of the restless sleep, we at least have a plan. We are planning to have her tonsils (which are enormous) and adenoids removed in June.  She suffers from sleep apnea and we believe this is at least in part to blame for the lack of restful sleep she gets.  There are numerous studies that show links between sleep apnea and behavior issues.  While at first it may not seem a likely connection, when you think about a child never getting solid sleep, it’s not surprising that it can result in lack of attention and other behavior related issues.  In my heart I just keep hoping that the surgery will result in a whole new Tera.  One who is sick less or at least less severely, one whose attention span lengthens, and whose behavior issues significantly decrease.  That is my dream, we’ll see what actually happens.  But that isn’t until June, we still need to survive the rest of the school year.  

She has so many adults around her who are doing so much to help her be successful, but no one seems to have found the magic key to getting through to her completely.  After meeting with the director of her daycare two weeks ago and brainstorming for a while, we all came to the conclusion the enlisting the help of a behavior specialist is our next move.

The advantage to Tera having had so many teachers and therapists, is that they are an endless supply of contacts and resources.  So after reaching out to many of them, we got a few suggestions and one solid lead that we will be setting up shortly.  Right now the plan is for her to go observe Tera three times at daycare and once at preschool and then we’ll talk about a plan after that.  

It feels good to know that we have something moving, but I still hate that we have to take this step.  She truly is a great kid, and I just want everyone to be able to see that.  And it would be really great if at some point in the next five years Tom and I didn’t have to follow her around anytime we’re outside of the house...

It's hard to believe looking at a picture like this that this face could ever incite anger, but she has pushed the levels of all the patience her father and I have ever been able to muster.

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