Monday, January 19, 2015

The Queen's Speech

I haven't written a lot lately.  Well, that's not true.  I have several blog posts I just can't bring myself to push publish on. 

I feel like my writing is linked to what we are fighting here. 

Stuttering.  Not just a couple of words, here, mind.  Like it feels like everything. 

(the link if you are on a mobile device:  https://www.youtube.com/watch?v=qvWRf4_ydCw)
 

Unless she's angry and telling me off.  The stuttering gets worse when she is tired and worn out.  So even if she has an okay day at school, she is wiped when she comes home and I get it all.  All night.

I get either the above or I get "turd," "no," or anything that she things might get a rise out of me. 

Or she watches excruciatingly annoying YouTube variations of Frozen.  You know what is way worse than Elsa?  Elsa in Japanese.  In anime.

(The link if you are on a mobile device:  https://www.youtube.com/watch?v=BM1md3oYb8M)

She is also dealing with a TON of sensory issues and tween attitude/hormone bursts.  And some days it's hard to tell if she can help the fit or she can't. 

Is it the sensory overload, is it a bad attitude, is it struggles at school, is it social anxiety, is it frustration with her own inabilities, is it that she is completely hacked off by the stuttering tying her down?

I have always been super conscientious to not give her consequences for things she cannot help.  But I have been equally conscientious to give her reasonable consequences to behaviors that are not acceptable in public or life, like all my other children. 

This whole tween/teen stuff with non-verbal peeps is the pits.  So much of it is feelings.  And if you can't express it, all of it remains bottled and it all remains there, chaffing....eating...hurting...

Also, who you are as a person, not as a parent, but your own struggles and foibles, figures in in surprising ways to kick you in the teeth.

The best thing to do with people with stuttering issues is praising success and giving tools to personally work through the catches, and then to just sit back and allow them to work through it.  If I wait her out and don't rush her, I get distracted by dust motes...my brain races off to my to do list, stories, and really random stuff...and I am fighting to stay tuned in, so I can understand her story, request, whatever.   My inability to shut up my head....well, it's worrying me...and I'm seriously considering treating my own ADHD so I can reasonably deal with her stuttering.  I have opted to treat it naturally with essential oils and coffee, but some days, it's just not enough.

So.

I am not telling you good news.  I am not telling you hope for your future if you have a little.  I am telling you of the battle we are waging today.  A bad one.  One that keeps looping back to get us.  Stuttering and disfluencies have been a factor that we have thought we beat.  Several times.  And every time it comes back, it's more virulent, and, frankly, more depressing to deal with.

And stuttering is, in some ways, a terrifying foe.  You cannot communicate and in some ways you lose your child.  You cannot wage a focused war.  You want to bomb everything and start over, but you can't.  You want to take your kid and flee, but you can't.  You have to start with one thing and keep trying while you flail around in the cupboard of possible treatments.  None of which promise anything.

And I find myself fighting the urge to jump around like "Bertie" in The King's Speech when he discovered that he didn't stammer when he swore.  Stammering is a "Beastly Bastard" that I find heavier than the Downs. Heavier than the sensory stuff.  Heavier than even the impulses of the ADHD.

For somebody that didn't communicate any of my feelings for the better part of 30 years, I find the restriction particularly cloying and hard to deal with.  And I cannot fathom how hard it is on Elise, for whom there have never been barriers that she couldn't overcome in some slippery manner.

And so I let her watch 4.33 minutes of movies over and over when she is home....And with so many scenes that she obsesses over being battles or triumph, I daresay she is feeling the oppression, too.

(The link if you are on a mobile device:  https://www.youtube.com/watch?v=-wX6_qCCnPc) 
I've spoken of her love for Peter Pan before.  But, I will add, that just because you are a child, does not mean you don't have battles. 

And so we fight.  And sometimes, it takes strength to stand.  So we continue to.

 
We'll fly again, eventually.