Monday, May 21, 2007

"She is SUCH a sensory kid..."

BT the OT said this of LMNOB at the end of our second session (Which was on May 4th - I'm really good at keeping things current, no?) when I handed her LMNOB's jacket.

It was plum full of rocks in both pockets - an utterly independent and altogether ingenious move on the part of LMNOB to self medicate her less than full-throttle proprioceptive sensations. Her way of securing weight to her body so that she would be more aware of its position in her environment. WAY more cool factor than a weighted vest, too. And, uhm, FREE.

This statement of BT the OT, made after she'd had time to review the paperwork mounds I'd created for LMNOB, made it much more real for me than the entire first visit had- which left me feeling like I was hanging on an "Is she... or isn't she...." cliff.

This means...

My child has special needs.

There...I said it.

Really, it's not like being told your child has cerebral palsy, Down's Syndrome, or some other such developmental issue where the special needs are outwardly visible, grounds for being stuck in a permanent box by people close to you, strangers, and everyone in between. It's also different from her teacher calling me in to discuss her growing suspicion of a learning disability. LMNOB's sensory issues are much more subtle than that to the untrained eye (Also: in the absence of a superfit, which is not subtle at all). In this, I find some consolation; relief that all extrinsic appearances point to normalcy - whatever the heck that means anyway.

But, it also means that I have some burdens before me - those of balancing stimulation with desensitization in their respective areas, adapting/abolishing certain family practices, and convincing her network of teachers, care providers, pediatrician (oh, crap, that reminds me - I never have followed up with him!), and anyone else that is influential in her life that her special needs are real, and they need to be accommodating as much as I do for a well-rounded, happy and healthy LMNOB.
If we just ignore it because we can't see it, then we will have what has been the destructive pattern for her entire existence:
  • compensate as much as she can in her environs (which is a lot - super smartie that she is)
  • but carry many sensory frustrations in a day, and;
  • when we all get home, the floodgates of sensory hell buckle, mercilessly
  • I can't deal
  • Charlie Brown can't deal
  • WAY too much yelling is had, and;
  • LMNOB ends up thinking: my parents, who are supposed to love me unconditionally (and DO!), can't stand to be with me, and why oh why do I ALWAYS screw it up - what is wrong with ME?
I can't let that last one happen on my watch - ya know? Especially because that kind of thinking can open up anxiety, depression, and the noxious can of all those other [quality of] life-threatening behavioral-emotional worms. Better to keep the lid on those wrigglers by knowing that yes, she is "different" (aren't we all?), but here's how to cope with those differences, and life goes on all happy and rosey-posey. FUNctional too. Fun for her, functional for me.
In the meantime, our 3rd session with BT the OT was had last Friday. It would have been the 4th, but we had a scheduling miscommunication last Friday, which ended up conflicting with my getaway with Charlie Brown, so it was canceled.
LMNOB sat on an exercise/therapy ball while BT the OT manipulated it such that LMNOB had to work REALLY hard to keep her balance. Next she swung in the "bucket swing," the prospect of which had an effect on LMNOB's countenance comparable to that of a junkie learning the next hit was mere moments away- like just knowing actually made her high. She loves that thing.
Her reaction was another thing that BT the OT commented on. She spoke of how she'd just gotten done with an eval for a kiddo whose pediatrician had already stuffed him in the SID box, and after BT the OT had spent some time with the kiddo, she was like, "Eh, not so much. Sorry." With LMNOB, she said, it's pretty clear to her. All I know, is she's got a pretty damn good read on skeptical ole me: This lady needs lots of reinforcement and affirmations. Or maybe, it just comes with the territory of the whole appearance of normalcy thing?
At home, some of the things we're doing lots of:
  • bear hugs
  • wheelbarrow walking
  • mini-trampoline time
  • crab walking
  • scalp massage/pressure before grooming
  • thick pudding/shakes to be sucked thru a straw (for the oral stimulation she needs)
  • picture scheduling
  • reminders before transitions
  • hanging from bars - like pull-ups (hahaha - someday)
  • push-ups (both wall and on the ground)
  • resistance work with a therapy/exercise band
  • thera-putty (think stiff like modeling clay)
  • our version of a weighted lap pad for sitting at school/dinner (our version is a pillow case filled with rice that is bound shut - MUCH cheaper and works with heat/cold too)
  • telling LMNOB to use the potty versus asking if she has to go
Mornings are hardest. The transitions are so many (bed-dress-breakfast-grooming-activities-out the door for school) and in such limited time (no one is a morning person at Casa del Meyer) that it's tough - but doable. I usually feel like I've been thru boot camp, as the drill sargeant, by the time I get to work - but at least in the past 4 weeks, we haven't had the horribly crazy separation sagas that were manifest most of the year.

The superfits...well, we haven't had one for 3-4 weeks, which means we are due a big one any day. We've had lots of fits that are frequent and still quite intense, but do not have the prolonged duration that we were experiencing before. I'll take progress where I can get it, eh?

Add to all of this that Punkinhead has had a freakish growth spurt in the past 4 weeks (Mom - the pants you bought him for Easter - BARELY fit now!!!) and he's achey and whiney and having horrible, rotten, no good days because of it, and life has been full lately.

Very, very full.

Thank God for His comfort and peace through it all. Who knows where I'd be without it.

2 comments:

  1. Hi - I'm going through evaluations with Stink right now. He's not as tantrum oriented as LNMOB is (from what you've described) but some of it is similar. I think of you often during my visits/calls to the doctor. I know you'll do okay. Hang in!!!!!!!!!

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  2. Oh girl, you're doing such a great job with this. You should be very, very proud. The fact that you've gone so long without a superfit means all you hard work is paying off.

    You had asked about B's evaluations and we're still getting those off the ground. The more research I do, the more we're thinking it's ADHD...excessive talking (unable to NOT talk at times), interrupting others, impulsivity, at times unable to sit still...they're all pointing to ADHD. As luck would have it there's an ADHD clinic right around the corner from us (literally...I can see it from my front yard). We just need to make it through the referral process. Thanks for asking about us!

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