Friday, March 29, 2013

Stand tall, stand proud

Lucy hasn't been in her stander much over the winter, because it hadn't been professionally adjusted since we got it.  I messed with the headrest and feet bracing enough so that it was usable, but it wasn't comfortable for her, and I didn't trust myself to do the adjustments in the proper way (re: there are about a billion knobs on the darn thing.)  So this past week we had the PT who sold it to us over to do the adjustments for Lucy.

She was very excited to get back in the saddle!

And mom was excited to mess with her hair :)

Being in the stander is good for Lucy's bone density and motility.  Hopefully the appeal of this will last for awhile - there are some days when stander time is not on the top of her list of things to do :)

Sunday, March 24, 2013

Isn't there a manual for this?

Parenting is H. A. R. D.  Now, the only parenting I know is parenting a nonverbal, immobile child.  I don't know if that's harder or easier than parenting a typical child, but I know it's definitely challenging.  Discipline, motivation, understanding... all difficult.  Frustrating.  But when it works, it's rewarding beyond comprehension or explanation.

I struggle constantly with whether I'm using effective techniques with Lucy.  Am I advancing her development enough?  Pushing her too much and turning her off to what I'm trying to get her to embrace?  Am I getting through that humming, eyes squeezing shut shield that she puts up when I talk to her for more than 10 seconds straight?  Most times, that questions is answered with a resounding "MMMMMMMM."

I want to communicate with Lucy so badly.  Not in the sporadic, "sometimes I'll cooperate with you" way that we have going now.  I want her to be involved in what's going on around her, for her to be invested in her everyday.  For her to assert her needs, and wants.  I want her to want to communicate.  Why shouldn't she?  All it can do is improve her daily activities!

And then I have to remind myself - after giving myself a few black eyes and a kick in the shin over not being able to get her to stop humming over the top of me - that she is a kid who has about as little control over her life as she can have.  What can she control?  I move her.  I feed her.  I talk to her, entice her with endless questions, and do my best to interpret what she's saying, but I can never be absolutely sure what her tirades are about.  All she can control, really control, is whether or not she's listening.  And possibly whether she poops directly on my hand.  (Thankfully, she's a sweet girl who doesn't wish to exact revenge with her butt.)

Unfortunately, I haven't been able to motivate her, with any consistency, to listen consistently and respond appropriately.  It makes me feel so discouraged, because I'd like for Lucy's days to be filled with as much as she'd really like to do as possible.  Even if we only do "yes" and "no" responses, and we have to play 50 questions - I'd totally settle for that!  Most times, though, she won't pause her humming long enough for me to get out questions 1 through 3.  A lot of the time, I'm pretty sure she's fully telling me what she wants, what she's thinking, that the pajama pants I'm wearing are hideous with my top... unfortunately, it's indecipherable to me.  I envy all those moms who are completely tuned into their kids, and know what every blink and hum mean, based on pitch; I'm not one of those.  I need something more.  Lucy deserves something more.

Her eyegaze trial is set for the beginning of next month.  I'm praying that the more rewarding cause/effect of this machine will be the motivation Lucy needs to really start to communicate.  Otherwise, Mama is fresh out of ideas.  Please say a prayer for 1) the motivation to be there for her, and 2) insurance to cover this ridiculously pricey piece of equipment.  One kind of relies on the other; Lucy needs to show, within the 3 week trial, that she can use the Tobii eyegaze purposefully to communicate.  If she can't, the odds are slim to none that insurance will approve.  Even with that proof, convincing an insurance company that a 3-year-old communicating her basic needs with her parents is not a luxury, but a necessity, is hard to do.  Crazy, right?  Such is the game we play as parents of special needs kids.

So, in closing, I feel inadequate as a parent, and my kid is running roughshod over me.  Something tells me I'm not alone.