Wednesday, February 12, 2014

On *Her* Terms

I've said it before, and I'll say it again until the day I die:  it is not an incorrect stereotype to say that the extra chromosome in Down syndrome comes with a very distinct stubborn gene. 

Sure, sure, when I've been bold enough to say ((gasp)) stubborn and not a stereotype in the same sentence I've received plenty of flack.  And what I have to say about that?


What. Ever.

Samantha is stubborn as all get-out.  Certainly not all of it comes from Down syndrome, and certainly at least some of it comes from Only Child syndrome, from which she never has to share her stuff, never has to compromise on an activity, never has to do things on other people's terms.  Well, except for Mommy's and Daddy's.  But that's different.  And that's not guaranteeing she'll even do that. 

Along with her extra chromosome and her innate stubbornness, she also has a fair amount of OCD (Obsessive Compulsive Disorder).  It's nothing terrible, and doesn't generally get in the way of things, but it's something we try and try to teach her to push past.  We pick our battles, though - if she wants her juice cup to be sitting in a particular place on the table, so be it.  If she insists on closing the bathroom/bedroom/whatever door behind her, as she always has done, it can be problematic, especially when there's a cat inside... 

When it comes to playing with friends or classmates, it comes out as being supremely bossy

She wants to play/do what she wants to play/do, the way she wants to play/do it.  There is no room for compromise, and when met with the resistance of the other party, results in stomping/pouting/growling.  Sure, all kids are like this at some point, but usually this complete unwillingness/inability to compromise is outgrown by now.  So I blame the chromosome.

It also results in her having to play alone, and side by side instead of with another child.  Not all the time, but often enough that it frustrates not only us, not only the other child, but likely even her.  She can't help it.  And, deep down, I think it bothers her.

Everything has to be on her terms.

All or nothing.

And, when it comes to her auditory sensitivities, most strangely, it's also on her terms.  This one makes no sense, and leads me to believe that stubbornness fuels much of it, far more so than an actual sensory issue.

For example, Samantha, as a baby and young child, was legitimately startled to tears by sudden loud or shrill laughter nearby.  She would cry when another baby or child was crying, the sound seeming to hurt her ears.  Then and now, she will seemingly feel real pain when within earshot of a voice on a microphone or loudspeaker, its shrillness piercing her skull as she scrambles to cover her ears and put her head down to muffle the sound. 

But let's look at these examples:

a) At a child's birthday party in someone's home - decibel levels are high, as the sounds bounce within an enclosed space.  She's bothered by it, but can handle it.  Until a child picks up a party whistle and starts marching around the house blowing it.  Sammi covers her ears, and cries, screaming for him to stop, and I have to pull her outside to get her to calm down.  Once we re-enter, and she sees that the child has put the whistle down, she can relax.  A short time later, she finds another whistle and begins blowing it mercilessly, as loud if not louder than the other child had.  She laughs, enjoying herself.

b) At an outdoor event, the music is loud through the large speakers on the grass.  She stays well clear of them, covering her ears and looking pained as we move past quickly.  At another outdoor event, the music just as loud as it had been the previous time, she hears the sound from a distance, and gravitates towards it like a moth to a flame, getting closer and closer, excited, ready to dance.  She positions herself right in front of the speakers, and dances until it's time to go.

I just don't know.  It makes planning very difficult, as we will never know, in advance, whether or not something will affect her, or what will trigger a negative reaction.  I carry her headphones around with us in those instances, ready to pop them onto her head at a moment's notice, if necessary.

Stubborn?  Oh, yes.  Willing?  Most definitely, if it's on her terms.  Random?  Heck yeah. 

But we're learning to cope, and it doesn't rule us. 


my family said...

must be the chromosome b/c I know William did not get his stubbornness from me:) HAHA
glad to know Im not the only one who has to work on my child's terms.....maybe not all of the time, but when he doesn't want to do something I need him to do (school work) I find a way to make it "his" idea

Cindy said...

That's interesting about the noise levels. From what you've written, it seems she's okay as long as she's in charge of whether she listens or not. Beth is like that with pets. A friends cat jumped up on the couch with Beth and she was startled, flung herself back and put her arms up in an 'I surrender' kind of way. The cat just sat there but Beth refused to pet it. When we put the cat on the floor, Beth reached down herself and was petting it. It seems if they can't control the volume or the animal, it creates such fear. But not control as in a bossy way, but in a way that they can handle and still function. Having control of something so they can stay in their comfort zone. (Like me pushing on the invisible brake when I'm in a passenger seat of a car!) :)

Kerri Ames said...

I think stubborn is with all genetic syndromes--even the as of yet diagnosed ones. Boo has a stubborn gene as solid as bedrock. But I think it is also what gives them the drive to work so hard at accomplishing things. They stubbornly want to do it their way because that is what works for them.
If only it wasn't so hard on the rest of us

Mao2702@gmail said...

Are you sure you aren't talking about my daughter withDs? Last Spring we were wary about bringing her to an Irish dance recital for our older DD, because she is so sensitive to loud noise. We sat near the door and brought two cars for a quick exit, but she clapped and cheered through the entire thing. Then we took her to a birthday party where all 15 or so kids scream "Happy Birthday" and she runs screaming from the room!

Melody said...

99% of what you wrote made me giggle and say "yup yup yup" as if you actually know my daughter (who is only 3) thanks for writing conscience is clear that all the stubborness came from me ha. Has there been any advice?

Deanna said...

Addison is extremely stubborn. EXTREMELY. I don't think your generalization in this case is off at all- at least in our experience.