Tuesday, February 24, 2009

asking for prayers

....not for me, but for a dear friend who is very ill. She's a fellow "parent of autism", has 4 boys and is such a giver. Always so supportive, willing to help or just listen, etc. But tonight, she's in ICU with blood clots in her lungs. I can't go visit, she lives in Indiana. But apparently she's in very serious condition, so everyone is asked to please pray for my friend Shannon, her husband, and her 4 little boys. Pray, pray, pray and keep praying, please!

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..........

Tuesday, February 17, 2009

I needed this today

Well, thanks to Amy at In the Eyes of A Survivor, I've received a blog award! :) Thanks, girl, I really needed this today. Why, you ask? Hmm, let's see.......Energizer threw up in his bed this evening (OMG please don't let him be sick), a chorus parent is emailing me to bless me out about just why did her precious child get a zero even though she missed a concert, my dining room table is literally COVERED with a mountain of clean clothes that need to be put away, and the nearly-constant headache is still hanging around. Yeah, yeah, I know, it's blood pressure, don't remind me.

Anyway, here's my award, isn't it cool?


The rules for this award:

Choose a minimum of 7 blogs that you find brilliant in content or design. Show the winners names and links on your blog, and leave a comment informing them that they were prized with “Honest Scrap.” They can keep the little Honest Scrap sign....

List at least 10 honest things about yourself.

1. I wish I weighed about 30 lbs. less than I do, but would settle for 15.
2. I absolutely cannot believe it's been 20 years since high school graduation.
3. I always thought I'd have girls, since I was such a girly-girl myself.
4. If I'd known what direction my life would take (preemies, special needs etc), I would have gone into music therapy instead of music education.
5. I drink Diet Coke (or some version of it) every day. Multiple times every day. MANY multiple times.
6. I still get nervous in getting in front of my classes at school, even though this is my 14th year of teaching.
7. I'm a political/American history junkie. Secretly wish I could live in Washington and permanently inhabit an episode of the West Wing.
8. I still mourn over my lost pregnancy and parenting experiences, and probably always will.
9. Never thought in a million years that I'd be giving ADHD meds to my child, but here we are.
10. I have a wonderful marriage, and am incredibly blessed.

Thanks again, Amy. I'm proud to accept this award, and want to thank all of the little people......LOL! Seriously, now I'm supposed to tag my fav blogs (that Amy didn't already choose), so here they are:

Unique But Not Alone
Soapy Water
Two Princesses, a Queen and an Old Frog

I think that's all I've got, LOL..........hope just 4 blogs is enough. Have fun ladies!

Friday, February 13, 2009

Friday the 13th

Yep, it's that time again, time for a new Friday the 13th on the calendar, and a new Friday the 13th movie in the theaters (which I will NOT see, thank you very much). But this one is Feb. 13, which means that yesterday was Feb. 12. In my crazy-busy Thursday, I didn't get to post here like I wanted to......but Feb. 12 is a pretty darn significant day in my life. So you get my Feb. 12 story on the 13th instead. Deal with it.

All I really wanted to do was see the Prairie Home Companion show, live and in person when it came to Charleston. I'm a nerd, freely admitted, and love listening to that show on the radio on Saturday nights. I'm not old enough to remember the days of sitting around the radio with your family, listening to musicians and corny comics, but this show is like a taste of that. So in late 2003, I heard it was coming to Charleston, and K agreed to go with me to see it. Not his cup of tea really, but we decided to make it a Valentine's Day outing since the date of the show was Feb. 12, 2004. We even splurged on the most expensive tickets, which for 2 of us cost over $100.

I was pregnant with the Energizer Bunny at that time, and as 2003 turned into 2004, things started deteriorating. Headaches, high blood pressure, forced out of work due to the need for bedrest at home....you get the picture. It was the nasty preeclampsia rearing its ugly head again. My OB wanted me to go to the medical university hospital and get a very thorough ultrasound and checkup with the maternal-fetal medicine gurus down there, figuring I would become their patient soon enough. *sigh* Appointment date? Feb. 12, 2004. It was in the early afternoon, and I figured it would be ok to ask those doctors if I could pretty please with sugar on top go to the PHC show that night. I wouldn't do anything strenuous, just sit in an auditorium seat and laugh, that's all. I'd go straight back to bed afterwards, really. I'd even put my feet up while the show was going on, and I wouldn't drive because K would do that.

Well, I didn't even get the chance to ask that question. Instead, I got my "go straight to the hospital, do not pass GO, do not collect $200" card. Yep, that's what I said. A few more hours and I would have seen the show. Who knows what would have happened to me, or the Energizer, though. I honestly see now, as I look back, that I had no earthly concept of just how dangerous PE could be, and how many moms and babies die from it, even now in the 21st century. So I was admitted to the hospital, K took Mr. Literal up to stay with the grandparents, and thus began my month-long saga of trying to hold down the BP and keep that baby cooking for as long as we possibly could. Each day was a victory, each day was a little bit closer to "viability" for him. We made it until March 8, and even by then (at nearly 28 weeks) he only weighed 1 lb. 9 oz. On the 12th, as I was supposed to be watching Garrison Keillor sing the Powdermilk Biscuits song, my little man was estimated to weigh less than a pound. The doctors said he wouldn't survive, and we were expecting to deliver in a matter of days and then watch our child struggle and die.

But he didn't. He's 3 weeks from his 5th birthday, and as feisty and full of life as any child you've met. And I still listen to PHC sometimes on Saturday nights. I had a daydream one time that they came down here again for some shows.....and I contacted them and told my story. In the daydream, they gave our family free tickets, let us meet the cast, told the audience our story, etc and showed them my little miracle boy. You never know, it could happen, right?

Tuesday, February 3, 2009

cannot freaking believe this

OMG! I'm so @#^%$& pissed off right now, although the reason may seem small or insignificant.

Since Jan. 2008, I've been in a community choir group, which I have come to dearly love. It's fun, it's relaxing, I'm not in charge or conducting. I just show up, practice, sing in concerts, and learn from the director who is a great choral expert. We've done heavy-duty classical stuff like Brahms' Requiem, but we've also done lighter fare like Broadway show tunes, patriotic medleys, and this season it will be the Best of Gershwin. For a sappy cheeseball like me, this music is fabulous and so much fun to sing. "I've Got a Crush on You", "Embraceable You", "Porgy and Bess", etc etc etc etc...............

Well, guess what? I can't sing in the Gershwin concert. Our school's Fine Arts Dept. is doing Grease this semester, and I wasn't told until today when the performances are. Yep, same night, same time as the community choir. And the locations are a 40 minute drive apart.

I'm racking my brain here. There's GOT to be a way to solve this problem and allow me to do the Gershwin, but so far I haven't found it. That group really fills a need for me, for something to be in that's just mine only. K isn't a part of it, he takes care of the kids so that I can go to rehearsals, etc. He is part of groups that perform, he gets to have the chance to use his skills in that way.....and also to have the social aspects of the group participation too. And this is that, for me. Except now it's not.

Again, seems like a minor thing, but I'm really depressed over it. The group will be just fine without me, so it's not that, it's just that I want to do it and feel like there's nothing else I have right now that just belongs to me and is purely for enjoyment. So on March 28, I'll be here at the #$&*@ school playing my trumpet on Hopelessly Devoted to You, instead of singing Gershwin.


really excited

Hi, all. I'm going to be contributing once a month to a blog on a new website set up for parents of special needs kids, it's called Hopeful Parents. I'm very excited to be a part of this project, hoping to use this as yet another way to reach out and connect with other parents who know what this journey is like.

Each blogger has an assigned day of the month on which to write, and mine's the 24th of each month. So, come on over and check out the site, and look for my postings beginning Feb. 24. That gives me 3 weeks to decide what to write about, LOL!