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

[Thorny]

I'm glad you (plural) are finding answers for Henry that finally make sense, and I hope this will help you in planning and plotting out your future journeys.

We've been playing the fun diagnosis game around here, too, and my boys will kick off the New Year by starting at their third preschool in six months. I have hope it's the right answer, but only time will tell me for sure.

I feel like we're wandering around in the dark as well, a lot of the time. If I should bump into you, as we each fumble around, I'll be sure to give you a hug. :)

[Cassie]

I hope that we can all take this/these dark nights and learn to listen and to see. Much more I'd like to say, but I can't find the words. I send my love.

[AmyP]

I'm not sure I can offer help or advice, but just to let you know that we are still here and still listening (hugs)

[pumpkinmama]

Nice to read you again. So sorry that you've been struggling, but glad you've found some light. May the pinpricks keep multiplying and shedding the dark.

[Manise]

So glad you are back ( I've missed you) and that you are finding answers for Henry as hard and painful as it is. Wandering around in the dark isn't easy- been there though not to the same degree as you. Sending you my love and many hugs and know that you are often in my thoughts. Wishing you a New Year of hope and more light literally and figuratively.

[Carole]

I was thinking of you all day yesterday and hoping that you'd post. I always love your solstice posts and this one, while a bit heart wrenching is no different. I'm hoping your family struggles less this year and finds light in all those corners. I miss you.

[greta]

So lovely to hear your voice, here in the dark.
I have 25 years of Aspie raising experience...
do feel free to ask, I'd be glad to help in any way I can.
This post was such an eloquent description of the
diagnostic process....WONDERFUL!
Blessings to you and yours.
To light, and LIFE!

[Justine]

I too thought of you as I celebrated the return of light with dear friends... I totally "get" the darkness, may you all find light in places you never knew and may the journey to that light be a good one ( iwas looking for something a little more poetic but good is all you get)

[melissaknits]

As the mother of an undiagnosed now-adult Aspie who will never reach his potential as a result, I am so, so glad that you have a diagnosis. A diagnosis means there will be a plan. A plan means he has possibilities.

ALL my best for more light for Henry!!

[(formerly) no-blog-rachel]

I've always felt that knowing what the problem is helps, even if the answer is hard to take. At least you know what you're dealing with (this is how I feel - I'm not telling you how you should feel).

Love to all of you and please give those kids of yours a hug on my behalf.

And a hug for you too.

[Chris]

Negotiating a child's special needs is a very special challenge. Not everyone is up to the task. It's tough and you have to be tougher. Your perseverance and dedication to Henry will serve you all well. Just make sure you take care of you along the way. And if you need some help with that, fiber friends will happily step up.

[Cara]

I wish, for you and your family, more light in the new year!

[JoVE]

Beautifully said. I join others in wishing you more light in the new year. (My nephew, now 18, has aspergers. My sister recently put together a website. I'll find the URL for you.)

[Kathy]

I've been thinking of you and of Henry. Wishing you peace.

[wenders]

Hi. Welcome back, however briefly. I hope that we (the people you don't really 'know' here on your blog) can be little mirrors reflecting bits of (pink) light back to your and your family.

[Anna]

Hi Cate, lovely to see you back. My 5 year old was recently diagnosed with Aspergers, not surprising as there is some of it in both my ex husband and my families. I'm now working with the school to get the local Council to fund a full time helper for him at school so he can reach his potential, he's so bright but everything is so overwhelming without a constant touch-stone of a person to keep him tethered. I found a great book which you may have already found yourself (you recommended some parenting books to me years ago when I was having difficulties with him!) called Parenting a Child With Aspergers Syndrome, by Brenda Boyd. It's 200 tips and strategies to deal with Aspergers behaviour and it's easy to dip into when you come across the next thing you have to deal with with them to find something that may work. Best of luck to you all and especially Henry, now you know exactly what you're dealing with his life is about to get 1000% better, I know my son's has because I know there's a reason for the way he's acting and I am learning how to help him. Hugs.

[Jessica]

Big hugs to you all! I hope that little bit of light continues to grow for you.

[Knitnana]

Beautiful words, powerful ones. Yes, Aspergers is frightening...but less so than so much else, I agree. I have a young grandson looking at it for a diagnosis. (And like you? I think both I and his mom have a bit of it, too...)

Thank you for these words. I wish you more light and more sweetness in the coming year.
(((hugs)))

[Risa]

I'm glad you finally have a diagnosis as that can lead to a plan. I hope that little bit of light grows much larger and brighter for you all.

[Bookish Wendy]

Oh. Love. As the sister of one I feel for you and your family and the struggle. But also hope you find joy in the reality of life with a special, talented, creative person.

[Ruth]

Hugs and blessings to you! We first began to step into that same light two years ago - and though there will always be elements of struggle for an Aspie in an NT world, the light just keeps getting brighter, and we can now see paths and places of safety we never dreamed possible in the dark days. Not only that, but the light that began with my daughter's diagnosis has unexpectedly illuminated the layers of suffering and denial in my own family of origin, opening possibilities for forgiveness and understanding I never thought possible. As I have said before - if there's anything I can do to help or support you.... you know where to find me.

[claudia]

Dude. Better times ahead, wish I.

[Lee Ann]

Oh, mama. All the love in the world to you, and thank you for your words. You have a way of shooting straight to the heart that makes me very happy to know you and call you friend.

Dude, there's a reason we have five other senses...sight in the light's not all it's cracked up to be. That sixth sense? Comes in handy a lot when you stand still for a bit. May all your senses help you to find your way. And remember, all of us out here reading you know have pointy sticks and we're not afraid to knit safety nets with them.

[Jenny]

Coming out of lurkdom to recommend another book, co-authored by my aunt, Cathy Grayson:
Parenting Your Asperger Child: Individualized Solutions for Teaching Your Child Practical Skills (http://www.amazon.com/Parenting-Your-Asperger-Child-Individualized/dp/0399530703/ref=pd_bbs_sr_2?ie=UTF8&s=books&qid=1229974226&sr=8-2)

Best of luck!

[knittingmother]

We're there too. You know that. This is a fascinating and scary and exciting and nerve-wracking diagnosis. You know I remain here for you if you need/want any BTDT experience. We're in the throws of medication which is working very well for us...but I know that's not the answer for everyone. Know that hugs are here...and if you wanna read something HIGHLY entertaining - get Look Me In The Eyes, My Life With Aspbergers.

((((HUGS))))
Tex (knittingmother)