Friday, February 20, 2009

the mountain is just so high

Fair warning.....a bit of pity party and whining may follow. Continue reading at your own risk!

I went to a wonderful workshop today. It was sponsored by the SC Autism Society, and this is my first exposure to that organization, but I was impressed. Today, they brought in a well known doctor, author, researcher, etc by the name of Jeanette McAfee. Thanks, sis, for encouraging me to go to the workshop--I'm very glad I did.

I've been to a good many workshops in my life......some related to teaching, music, etc, and some related to ASD topics. A common thread that runs through them all, at least in my humble opinion, are the questions that I ask myself: "Did I learn anything? Can I take anything usable home with me? Will this make a difference in how I __________ (teach, parent, perform)?"

And it sucks royally when you go to something, spend several hours or a whole day invested in the presentation, and then conclude that it was basically a waste of your time. And sometimes a waste of your money too. Been there, done that, got the T shirt. Today, thankfully, wasn't like that.

Actually, today's workshop leaves me with almost the opposite problem......I brought home SO much new knowledge, so many ideas and suggestions of ways to help Mr. Literal that I feel somewhat overwhelmed. Don't know where to start, really. The workshop was titled "Navigating the Social World", which is the name of Dr. McAfee's book. The program was advertised as "A practical, hands-on workshop covering a social and emotional skills curriculum for individuals with Asperger’s syndrome, high functioning autism, and related disorders." And that it was. But what now?

Dr. McAfee's Power Point that accompanied her talk had to have been 50 slides long or more. The handout that went along with the presentation had mini versions of the slides, with places beside each slide to take notes. I wore my hand out by writing, let's just put it that way. And each new topic she brought up was well-explained, well-documented and reasoned, making me think "oh yeah, I can do that, it makes sense, I know that'll work well for Mr. L". And the next one, and the next one, and the next one...................

If you meet Mr. Literal in person, chances are you don't see much on first acquaintance that would tip you off that he's on the spectrum. He speaks well, he's smart, he's usually "well behaved" in public, etc. But here's what I've come to realize: The deeper I delve into his weaknesses, his struggles, his "core deficits" as the ASD world likes to say, the bigger and bigger and bigger the overall problem seems to be.

You know those pics you sometimes see of icebergs? The ones where a small portion is above the water's surface, but then you see what's under the water and it's HUGE? That's Mr. Literal. The surface stuff looks good, not too intimidating, but when you see what's underneath, OMG. Mind boggling, truly. So after today's workshop, I want to just move to California with him and live in our car outside Dr. McAfee's clinic, so he can work with her indefinitely. I worry that it's already too late, that we've missed the chance to address some of the issues. I want to observe him 24/7 and track his stressors, I want to make him a stress thermometer, a Privacy Circles chart, I want to do Laban movements and puppetry and mirroring, and role playing and drama tableaux and social skills therapy at school every day........but there's just too much. I don't feel qualified to do much of that, at least not very well, and I don't even know where to start. What to choose, what to ignore or postpone?

Damn it, this is hard. I feel like it all rests on me, as no one knows Mr. L as well as I do or has invested the time, effort and mental energy in the situation like I have. She told us some scary stories today, not meaning to scare us, but it did anyway--talking about very smart and highly educated adults who can't hold a job, have no friends or meaningful relationships, and it's because they lack these crucial social skills that it takes to make and keep friends and to adequately please employers with your attitude, etc. *sigh* So, can I quit my job? Because that's what it feels like it would take....full time home therapy program, addressing social/pragmatic deficits round the clock, 24/7/365. And even that might not be enough.

Think it's time for some of those relaxation and de-stressing techniques she taught us today..........


Jen said...

I hear ya sister! Hang in there and it will sink in over time. You are empowered with knowledge and each day will allow you to add a few more strategies to his life. You are a rock star Mama for approaching this. Miss ya...Jen

Lori said...

I totally agree with Jen. You've found out some things now that might help. Just take a deep breath. Knowledge is half the battle I think. Love ya ((((hugs))))