Friday, October 15, 2010

Hope by a factor of x

This is just too good to keep to myself.

First, a bit of background. It's been a rough couple of days around here. A major storm blew into our area yesterday and the low pressure system that accompanied it wreaked havoc on Bud's system, the way that low pressure systems often do. Coincidentally, Bud had an appointment with the doctor who does his medication management yesterday, so the doctor got to see first-hand the extreme behavior that these kinds of systems can cause. We were able to talk through some strategies regarding the timing and dose of medications when these situations arise.

But, today, the storm continued to rage outside my house and inside my boy, and though I had a plan for medication (which was ultimately successful, I think), I knew early this morning that I would not be able to send him to school today. Instead, we had a sort of home-spun homeschool day, just the two of us, for better or worse (and, frankly, we experienced a little bit of both).

It's been exhausting - and I imagine it's been twice as hard on Bud as it's been on me. And it's been frightening. When I see extremes in behavior, there is always some small part of me that fears it's a shadow of things to come - that this is not merely a blip on the radar caused by barometric pressure, but is, in fact, an emerging issue.

It was right in the middle of the day today that I remembered an e-mail I'd received a couple of days ago. It was titled "Hope?" and it was from Sharon, the mom of a young man with Aspergers. She'd attached a video clip and said she was sending it to remind me to never give up because the fight is worth it. I couldn't open the video link on the computer I was using when I'd opened my mail, so I'd saved it in my inbox until I could watch it from home.

I clicked the link today, and I "met" Sharon and her son Scott. The video was made when he was 21, following a period of about seven years when he was so uncomfortable around people that he rarely left his home.

But on the day this video was made, Scott took a risk and left home. He did it, he says, because "a lot of people have a lot of pre-judgment against autistic people and I'm here to try to break it."

And break it, he did.

It was just what I needed to see today - a day when Bud and I weren't able to leave our house, a day that didn't seem full of hope.

But this filled me up.

18 comments:

kristenspina said...

I'm so sorry you guys are having a rough time. I've been thinking about you and your guiet and wondering how things have been. Sending hugs and a little more hope your way. And I'm here if you ever want to talk. xxk

*m* said...

What a clip -- hope-inspiring, indeed.

I hope the storm passes for you and Bud soon.

adiaryofamom said...

i wish i had words, but i am completely overwhelmed by emotion.

holding you and bud close.

KAL said...

Oh, wow. that was so so great to see. I'm sorry things have been rough, thinking of you and hope the cloudy days pass soon. Hugs.

Drama Mama said...

you unraveled me.

i'm saving this and watching often.

thank you - and hope things get better soon.

Anonymous said...

I have tears in my eyes watching that clip. Sometimes I wish I could come over during moments like that and wrap my arms around you both and give you a hug.
Mrs. Nee

trydefyinggravity said...

wow. on a day that we were stuck in the house, this was...beyond words. Thank you, Bud and Scott for sharing this with all of us.
alysia

Stimey said...

I see clips like this more and more often. People with autism standing up and being themselves and being successful and showing the world part of what it is like to be autistic and it makes me happy. I am so happy to see our people representing. Thanks for sharing it.

I hope things smooth out for you guys.

Valerie Foley said...

I'm proud to say that Scott has recorded my song Through My Eyes, and the job he has done is unbelievable.

Both Scott and Sharon inspire me every day, and remind me, too, that one foot in front of the other, with love and compassion will take you a long way.

Hope there's more sun peeking through today.

:)

kristina said...

I am hoping today has been better.

We went through so much storminess with Charlie in the past couple of years, I am in awe when there are a string of quiet good days. And they will return.

Every time i see a display of pumpkins (quite a bit of late, given the season), i think of Bud and you.

Warmest vines emanating from here to you.

Anonymous said...

thank you. so much of our sanity depends on our perspective. thank you.

Stephanie said...

That must have been terrifying! And he sang so well. He was awesome!

That is definitely an uplifting moment, and an uplifting song! Thanks for sharing.

Kerri said...

Thank you for posting this. It was amazing! I will be sharing it with everyone I know to show how amazing our kids can truly be if you give them that chance. What an amazing man and Mom!

I know the days when it just doesn't pay to go anywhere with my daughter. It's tough, but we get through them. I hope you and Bud can return to quieter days soon.
-Kerri :)

traceybeth said...

Thank you for sharing this -- it was wonderful to see. (FYI -- Have you ever watched Matt Savage play piano? Also awe-inspiring.) So often you write about things we're dealing with too (our son is almost ten), and you manage to articulate what I've been struggling with in my own mind and then take it to a whole new level. Can't thank you enough for that! I often have to remind myself that a bad day is just that, and not a predictor of the future. And we're having a lot of conversations about death - they range from terrifying to hilarious. But after so many years of therapy, I am grateful we can have our wonderful, quirky, utterly original conversations.
Best to you and Bud.

mkozmik said...

WOW! I can't wait to show this to my 15 year old after school.

I hope you and Bud are doing better once the weather passes.

MK

Maddy said...

Shivers - thank you, just what the doctor ordered.

Ange said...

bawling for so many reasons. I know exactly what you speak of regarding if the new is a glimpse of the forever as we deal with challenges that we haven't dealt with at this extreme for years. I just think to myself I can't do this again *I can't*. He's bigger than me, stronger than me, and god I love him so much and can't stand seeing the confusion and rage in his little-boy face. And then something wonderful happens--like at the moment he has motivation to learn to tie his shoes. A stupid milestone I never ever forced him to meet because, well, I thought it was stupid when he could wear velcro and still be completely independent. Anyhow the amazing part is that he chose to work at something that is really hard for him but that HE wants to do...and to keep trying. The other reason this movie got me bawling is that Bub started guitar lessons...he loves music. Anyhow, I watched him struggle with the motor planning and I realized eventhough I talk a good game, I am still holding out for some sort of golden ticket. Like someday we can say he went through so much but look who he is now. It pisses me off because I want to love who he is RIGHT NOW. And I do, god I do. But the future scares me so much that sometimes it gets in the way.
*sorry for blubbering. cold meds must've kicked in!*

MOM-NOS said...

Ange, I hear you. The combination of "bigger & stronger" with "confusion & rage" is frightening. One day at a time. One step at a time. If we get too far ahead of ourselves, we'll unravel.

And thanks, all, for thinking of us as we weathered the storm. As soon as the low pressure system passed, Bud was back to his happy self. As I told his doctor, 80% of the time, things are good, and when they're good, they're fantastic.

The other 20% of the time, well... not so fantastic.