Things you find in the dark

It has been a pretty dark time around here. I'm not going to recount all our troubles, some of them are ongoing and the subject of pending litigation; some of them (wait! many of the same ones!) are just too damn long a story to even begin to draw out in this little corner of the Internet. But it has been hard. Dark in the sense of hard times, dark days. Not all hard, not everything. But I didn't stop blogging just to eat bonbons on the couch. That's all.

But it has been a dark time in other ways too. You know how sometimes a bunch of things happen that you don't really think about, and then something else happens that makes you realize that all those things were all one thing, and that one thing is an answer to a question you've been asking? It's a bit like fumbling around in the dark in an only slightly-familiar room. You might think you're on the north wall, looking for the light switch and when you bump your shin you wonder why someone put a box there and then you are surprised that the floor is cold and the next thing you realize you've turned yourself around and the light switch is actually behind you, and that box isn't a box at all but the bookshelf.

We have to have ideas and assumptions about where we are, even in the light, because it reduces our cognitive burden. We pretend we know what to expect next, and then we step into it without fear, even though we might be totally wrong in our expectations. Otherwise, it's a cliff you're stepping off of when you leave the house every morning, and for some of us, okay, for me, that's just too scary.

But sometimes, maybe dark times, those images can fail. The soft couch turns out to be the hard corner of a dresser (ow!) and the light switch isn't anywhere near where I thought it was. It's scary, those moments, feeling with your hands out in front of you for the wall, for any little thing to hold on to, that will tell you where you are, that will map the darkness so that you can find your way out of it. I haven't spent much time like that in the literal sense—I've always found my light switch, my eyes adjusted to a few tiny beams of light from a digital clock or a distant streetlight.

The last few years—it's even hard to say how many—have been a darkened room. And I think that, if not a light switch, we've found a night light, or maybe a touch map. It's still dark in here, but I have faith, at least this one day a year, that the light is coming back.  We've been searching for a little beam of light for Henry, and we think we've found one, whether a floodlight or a moonbeam is yet to be seen, in the form of a diagnosis. It's surprisingly unsurprising, considering how long we've been grasping in the dark. Asperger's. Hey, special interest, anyone? Knitters don't know anything about that. Ahem.

So we've got new light on this struggle that has gone on, well, for a long time now, and while it's not an easy piece of news, it's one I can live with. I think it scares me less than it does many people. Seeing as how I'm a knitter who works with college professors all day, well, I know you can live a big and interesting life and be an Aspie. I've got a fair dollop of Aspie myself, in fact, and I feel like I speak Aspie reasonably well, even if it's a second language.

One of the things we're learning is that life for my sweet young man is a little like being in a dark room. Oh, he can see fine, but it's hard to know what people are going to do, hard to figure out why they're sometimes friendly and sometimes act mad and you said the same thing both times! It's hard to follow all those jumbly-up words when people are talking fast and telling you to do stuff, and sometimes, you just need to take some time to recharge and make sure that you have the energy to try to figure out all those people again. So every day does feel like stepping off a cliff, and we haven't understood that as well as we might have.

We just needed a little light to see better.

So tonight is the longest night. Every year, I wish for a return of the light and this year is no different. I need the light to help me figure out the lay of this land, to make a map. But this year I'm also going to wish for better night vision. Because wandering in this dark place, while not easy, is showing me new ways to see.  And if there's anything I need right now to help our family, it's to be able to see things differently, and maybe more light isn't the only way to do that.

Tonight is the longest night, the night when I send my intentions out into the cold sky and wait for them to come back with the sun. I like summer, I do, but this year, my prayer is not waiting for a brightened return alone.  Under clear winter stars, and in glistening snows, I'll take this dark night to listen, and to learn to see.  And that, too, is a blessing, both bright and dark.

Comments

[M-H]

Ugh. Sorry to read that things have been that bad. It's hard to tell at lo these many miles distant. Hope the ray turns to a beam and full illumination results.

[Katy]

I'm so glad you posted. If you hadn't posted for solstice, I was going to come and find you!
I'm hoping that 2009 brings some calmer days and certainly some brighter ones. Best to you and yours.

[Sara]

There you are - phew on finally having a sensible diagnosis. Hang in there - keep on walking forward etc.

[Danielle]

I hope that this new season brings new light to your family -- literally and figuratively. Henry is blessed to have family who continue to seek out what's best for him, even when the road is a hard one to travel. Much love to you all.

[Emma]

Into the light, with an extra bit of love from me.
Just remember to enjoy your beautiful boy as well.

xox

[Riin]

Oh, you poor honey. You sound so down. May everything you need come to you.

(hugs)

[Katherine]

Having a diagnosis really is a help. My son is now 25, getting him through school was a nightmare. I had a filebox full of paperwork, psych reports, medical records, evaluations, etc.

The good news is that we had to pull that box out again recently--because he started trade school in electronics--and they needed it to set up his accommodations. So far he's getting up every morning, showering and dressing in clean clothes, and he has straight A's!

These are all things he refused to do when in high school. After high school he spent 5 years in his room playing video games, his only social life was playing D&D. We really were in despair that this brilliant kid was going to vegetate for the rest of his life. But now we have a lot of hope that he'll be able to be self supporting doing something he enjoys that's well-paid.

It's exhausting--but worth sticking with it.

[The Feminist Mafia]

My courageous friend -- it's wonderful to see you here, especially on this important day. But more specifically, I'm glad to see that you've tackled some of the to-blog OR not-to-blog questions, even if only temporarily. Your courage, both here and in life overall, evokes tremendous admiration. H. is very lucky to have you.

[Valerie]

My heart leaped to see your blog on my blogroll again. My best wishes on your journey.

[Norma]

Oh, Darlin'. But the hope that shines through this post is its own light.

Love you and miss you.

[TodayWendy]

I'm glad you've found some light, here's hoping the days keep getting longer. I was so happy to see words here after such a long time. Good luck to all of you.

[Kathode Ray Tube]

There are different ways to find your way around, by sound, touch, etc... and you know all that. I hope that all of those senses (light included) help you and your family in the coming times!

[Stephanie]

Isn't it funny where we find the light peeking sometimes? Lucky Henry. He's got you helping him find his way. Two in the dark is way better.

[Joan]

So happy to see a new post from you, as I often wonder how you all are. The naming of a thing always makes it easier to deal with. And the days are now indeed getting longer.

[Lisa]

I've been thinking of you and it's good to hear your voice. Henry will need a fighter in his corner and it's good he has you and your strength. I think I can safely say that we are all here if you need a shoulder (or some light!).

[Martha]

Sorry I am so late to comment but I am so glad you posted for Solstice--it wouldn't be Solstice without you. I think maybe the best thing I can wish you for the coming year might be clarity: light, transparency and a clear path through the wilderness. I know we will all be thinking of you--and have beem missing you!--whether you choose to blog or not. Many wishes for a better New Year!

[Kim]

It is both amazingly freeing and utterly terrifying when you FINALLY get a diagnosis that helps both you and the rest of your child's world begin to understand the what, why and how. It's not an easy road being a parent (or sibling) to a special needs child, let alone being the kid in question, but it is not without its rewards. The successes seem even more wonderful. And in order to be my son's mom I have to push beyond my own limitations and comfort zones, and I am a better parent (and happier person) because of who he needs me to be. There are lots of us out here to help keep you sane and centered. :)

[Erica]

We've been on the Aspie Adventure since Nick was flagged for Early Intervention at the age of 3 and was given a preliminary diagnosis of PDD-NOS. The 6 years since have been hectic, but not nearly as much as the three years before the diagnosis were. Having a diagnosis helped most people understand why certain behaviors happen (we're currently in month 9 of Nick's "special interest" in US Presidents), why he doesn't always "get" the subtleties of everyday human interactions (which makes for some alternately heartbreaking and hilarious stories), and what may lie ahead for us. The world is full of amazing resources-books, websites, programs to help kids with social and sensory issues, and there are a number of "real life" and on-line support groups for parents.

Best wishes to you, your family, and Henry on this journey.

[amysue]

Look Me in the eyes, is written by John Robison, a friend of mine for many years and he's local to you as well!

I am happy for you that you and your son are finding answers together and just want to say that as he grows and matures he will find more tools to help him cope and make sense of the world. I won't claim it will be easy for wither of you and I wish you all some quiet moments of joy along the way.

Our struggles helping Noah with his unique set of issues continue and somedays I just want to cry, others he says something so funny and brilliant that I can't help but be reassured. I feel like all I can do is hang on for the ride and see where it takes us.

Be well.

[marta]

hey you, remember me? i know i've been miserably out of touch for a couple of years, but i really do think of you often. i'd love to hear more about what's going on in your life. my dad recently moved to vermont, and we go up right by you several times a year -- would love to stop in for a meal sometime. i'll try to email soon with more about me. would love to know more about you too. sounds like life is pretty full these days ...

[Jinny]

Hi there,
Great job. But not enought info. Where can i read more?

Thanks
Jinny

[Susan B.]

Jeff Cohen, a mystery writer, is also the parent of an Asperger's child. He has written a wonderful book, ful of wisdom and humor about being an Asperger parent, entitled, what else? "The Asperger parent : how to raise a child with Asperger Syndrome and maintain your sense of humor" Published in 2002 by Autism Asperger Publishing Company in Shawnee Mission, Kansas (www.asperger.net). ISBN 1-931282-14-5
I highly recommend it. I knew nothing about Asperger's before Jeff sent me a copy of his book, but even I could see he knows what he is talking about. Check it out.
(Can you tell I used to be a librarian?)

[Barb]

I have friends who are dealing with a son who has Aspergers and I know how challenging it is. Big hugs to you and Henry.

[Sneaksleep]

I've only just come back to the blogshpere myself, after more than a year away, and I'm sorry I missed this until now. I hope that at least some of the intentions you sent out into the night sky have come back with some light attached, and that you have gained some night vision too. I don't have any special-interest wisdom to offer, but I can offer you *my* good intentions and hopeful energy. Loves.

[suna]

cate........is that really you?