Wednesday, December 31, 2008

Is there a difference...

...between winding down and winding up? The year is winding down to a close, and the day is winding up its last hours. Outside, it is cold and blustery, today's powdery snow swirling under the orange-y streetlamp glow. The children are sleeping, and the husband is out with friends for the night, so I will be ringing in the new year on my own. That's not a problem. I don't know that I have ever done that before,at least, not to my recollection. It thrills me just a bit, truth be told. I get to welcome the fresh year any way I choose. With a song and a dance, with a candle and a prayer, or with a sigh and a dream, already asleep.

Winding down, winding up...has this year been nothing more than an unravelling of hours? I try to remember how I went through it; sometimes striding, sometimes crawling, sometimes tumbling end-over-end, like an empty carton propelled down a sidewalk on a windy day...all the time moving forward, onward. Am I pushed, or am I pulled?

wind down
1. To diminish gradually in energy, intensity, or scope: The party in her head wound down as her best ideas began to leave.
2. To relax; unwind: time to unwind, before the next wave hits

wind up

1. To come or bring to a finish; end: by the time her story wound up; would she ever wind up a project.
2. To put in order; settle: she wound up her affairs before leaving the planet.
3. To arrive in a place or situation after or because of a course of action: she took a long walk and wound up at a place much like where she began...only far later then she had ever expected.

A year can feel like a long trek, or a short flight. It can feel like a series of exuberant leaps or a slow swim through murky waters. This year had a few installments of each. But this year winds down and ends for me with this:

From my last post, a windfall of extraordinary feedback, in form of comments and emails, that have knocked my heart right of its shelf. To all of you who wrote, who thanked me for telling my story, who gave a shout of encouragement and words of compassion, and who shared their own hurt for their children...humble thanks don't even cut it. I don't think I ever would have guessed so many folks would know the bittersweet song I thought I sang alone. Seems many of us know the words and melody too well. But by the same token, the more we reach out to one another, the more the world around us can hear and learn. My heart hopes for this.

From my editor, a letter telling me a story I have written will be published in an upcoming anthology in May 2009 for parents of children with special needs. Any mom can tell you, her kids are a favorite topic, and any writer can tell you, to be chosen for publication is a thrill like none other. Put those things together and it is a heady cocktail indeed. I drink a toast to everyone who encourages me with me writing AND my parenting!

And I wind up starting my new year with these:

A family I love and friends I treasure,
A spiritual path I honor and a natural world that astounds me,
A warm home, good food, good health, hope and humor,
Hands that can make art, and can play drums, and can comfort
Feet that explore and dance
Ears that drink in music and stories
Lips that can speak about all my blessings and sing the blues when need be,
Eyes that take in what each moment offers in order I might better understand,

And a heart that knows what is true:

Love is the only thing not trapped in the hourglass.
May it surround you every day of every year of your life.

Blessed be.

Friday, December 05, 2008

Last night...

...was one of those painful ones. One of the ones where "fake-normal" caved in and the raw, surreal insides of our family were left exposed to a less than receptive audience. Next door to us is a family of five, like ours, but with a glaring exception: none of their children are autistic, and none of them are mentally ill.

They know our situation, and they know our youngest's diagnosis, that he attends a special school. They know he can be odd and socially awkward. He can drive people a bit batty with his incessant chatting and one-man shows he acts out to himself on the sidewalk in front of our house.

They keep to themselves and their own social circle for the most part. They never come over to say hello, though they will wave that "hey" kind of wave you give a neighbor when our cars pass each other. They don't ask us about our son, they seem to have no questions about why he is how he is. I have tried awkwardly to explain him, but it is hard when you know the person listening really did not ask in the first place, like you are making excuses. That it is your problem, not theirs.

We live on a culdesac. Our house is right on the circle, as is theirs. They keep a basketball hoop on the edge of the road, and our son is excited when they come out to play. He runs over to interract, but really does not know how. They don't invite him to play, and usually abandon their game in the face of his efforts at friendship, which can be disconcerting, like him wanting to recount the plot of the Spongebob movie and asking them if they thought certain parts were funny.

Last night he was wandering about the culdesac like he often does...this time with a little stretchy kids necklace as a toy, one with tiny colored wooden beads and thin elastic, like a candy necklace has. He was swinging it about, reciting lines from Spongebob, and flinging it forward and back like a tiny, ineffective whip. A few feet away, the neighbor kids were shooting hoops, and Noah was becoming irritating, it seems. All this was happening while I was inside. I always assumed if there were ever a serious problem, my doorbell would ring. I was wrong.

It seems when the 12 year old boy reported to his dad that Noah was whipping him with something, Dad responded by marching out the door and snarling at my son, "You hit someone, Noah, and someone is going to hit you back!"

When I first heard the terrified screaming, I thought Noah had been injured. I ran down the hall as he tore into the house, and met him halfway, trying to understand what was wrong as he wailed incoherently. When it came out that the Dad had said this, I was in disbelief. Had a grown man really threatened a neurologically and mentally disabled 8 yr old? I could not conceive of what terrible thing Noah could have had done that would call for that kind of response. I was horrified, too, to realize I was going to have to go over there, and talk to this man about it. I HATE conflict. Angry people scare me. Confrontation terrifies me.

It was one of those moments when I am called upon to be an Extraordinary Mom. To have to try to educate someone (an angry someone) about my far-from-typical child. I was going to have to say outloud the words I hate to say, but that are painfully true: "mentally ill", "emotionally immature", "cognitively disabled" "neurologically impaired".

Having to be my Extraordinary Mom self, instead of my fake-ordinary mom self, kind of makes me ill, makes me shake, because I have to take her public and wear the crown of the Special Needs Family, my happy go lucky exterior exposed as a sham. I have to show everyone that things are beyond my control and all broken on the inside.

I walked the longest walk of my life across my lawn to their house, where Mom and kids sat on the front steps. I smiled as I swallowed bile and said I wanted to come over to help make sense of why people were feeling upset, what had happened. I explained that yes, Noah was swinging the tiny necklace around, but was not intending to hurt anyone. Mom said she never thought he was. I explained my main concern was that Noah thought Dad had told him someone at their house was going to hit him.

At this point Dad appeared from behind the open door, arms folded, scowling, ready for a fight. He announced with righteous ire, yeah, thats right, I did, and I don't see a problem with telling him that because it is the truth. He is always out here alone. No one watches him, and he is always waving sticks around and talking loudly at everyone. If he hits someone he's going to get hit back, thats just the way it works, and he needs to understand that.

I took a deep shaking breath and tried to collect my thoughts. I said, since he was not actually trying to hit anyone, he took your words to mean, you accidently hit someone, and I am coming to hit you.

He loves the outdoors and wants to be out here and is content to entertain himself, often outloud, with imaginary play. Sometimes he uses sticks as swords or lightsabers. He is a lot like a four year old in an eight year olds body.

Dad exhaled impatiently as I went on, I do keep an eye on him and am not ignoring or neglecting him in any way, but just trying to give myself a few moments to breathe and maybe attend to my other two sons while he is happily occupied. I said, I understand your frustration, believe me. I live with this little guy. He is exhausting, but...

With a final grab at my flagging courage, I said firmly, It is NOT appropriate for an adult to angrily threaten a mentally ill and cognitively impaired 8 year old, especially if that adult is AWARE of the child's disability. And I would hate to think you would be ok with any of your children responding to a problem with a disabled child by hitting that child.

You need to come to me when you are concerned. You need to talk to me when you have questions, or need to understand what he is thinking when he does innappropriate things. I WANT you to ask questions and bring your concerns, and your children too, if they need to. I cannot read your minds, and cannot help find solutions to problems I am not told about by a calm adult.

You cannot expect this child to absorb your anger and make sense of it, and adjust his behavior and become normal. You can't look to him to solve the problem. He can't. He is not able to. He never will be.

Dad put his hands in his pockets, and nodded, though still frowning. Was he actually getting it?

I plowed on:
Please understand, this is our reality. I wish more than anything in this world, my child could understand and fit in. That he could have a happy childhood, instinctively know how to play with other kids. That he could know what it feels like to be accepted. Here is the awful truth I live with: I cannot give my child that. No matter how hard I wish. The best I can do is build a team of supportive people around him, around us, to help teach him, and maybe help him survive this life.

He needs you on his side. We need you on our team. This child needs neighbors who will stand up for him, and try to help him, not berate and reject him.

At this point, I lost my hold on my tears and my voice broke, and I found to my horror that I was actually pleading with them.

Please. I can't do this alone. Please be part of the team that helps this kid succeed. I'm just an ordinary mom trying to do an extraordinary thing. I need all the help I can get.

Certainly, ok, of course, they awkwardly agreed, now that I was in tears. Don't worry about it, don't worry about it, its no big deal.

I went over to my son, who had crept up behind us and was standing about 20 feet away in the darkened street. I took him by the hand and said, would you like to say sorry for swinging the necklace carelessly? I know you meant no harm, but it is polite to make peace if someone is upset.

He nodded and we walked over, where he said a firm, I am sorry for swinging that necklace and making you upset.

Oh honey, its ok said Mom.
Dad said nothing.

We turned and went home.

I am telling this story because I had a sort of epiphany later that night, when I thought about how hard it had been to go stand up for my son, how afraid I was of the rejection and the intolerance. Parenting my son has made me go face to face with all the things that frighten me, that horrify me, that exhaust me.

I did not plan on having to be Extraordinary Mom.
Just mom. Ordinary. But I had no choice. I had to accept the job.

Then it occured to me...
They just wanted to be ordinary neighbors.
And I was asking if they would be willing to change their expectations of what it means to be a neighbor.

I was asking them to accept the job of Extraordinary Neighbors.

They did not ask for the job.
They have a choice.
I wonder what they will choose?

The more I thought along this vein the more I realized that, for all the people in our lives who turned such a job down, or had quit when it was too hard, my life was full of people who had already volunteered for the job, fought to keep the job. Loved the job.

Extraordinary family.
Extraordinary friends.
Extraordinary teachers.
Extraordinary neighbors.
Extraordinary advocates.

Even Extraordinary Strangers.

What sets them apart is that they willingly step out of their comfort zone to help someone who is too overwhelmed or self-conscious to even ask. They love us when we are unlovable, encourage us when we are giving up, pull us up when we have fallen face-down, hug us and dry our tears, and let us know we are really doing a good job under the circumstances.

I cannot expect everyone to accept that kind of job.
Its not for the faint of heart.

But to those who have,

thank you

thank you

thank you

from the bottom of my tired but grateful heart,

For embracing all the difficult moments you encounter by being in our lives.
For not leaving me alone out here when ordinary seems so far away.

And for reminding me that maybe ordinary is not what I want to be, anyway,
when you show me what Extraordinary really looks like.

Tuesday, December 02, 2008

If you don't know Chrysti... should.

Chrysti is one of those people whose energy and creativity can sort of transfix you, like a fireworks show. It'll humble you, too, because she is so damn talented, and seems to be a source of endless ideas and inspirations.

I know Chrysti enough to know sometimes she burns the candle at both ends, and I worry about her sometimes when she takes on so much. Then she boggles my mind by getting a second, or third wind, and urging others to keep reaching for the next big thing along with her.

Chrysti knows me enough to know that I am enormously proud to display her amazing work in my home, and that to me, she stands for more than just creativity, she stands for successful creativity, something I hold in my heart as a hope for my sons one day, especially my youngest, who struggles with bipolar disorder at the young age of 8. His creativity is boundless and a bit wild right now, but I know what that creativity has the potential to be, and that his diagnosis need not define nor limit him.

Right now Chrysti is having a fantastic giveaway extravaganza at her blog, and I urge you to go see what it (and she) is all about. She says she has not made much time to give, but I would beg to correct her. She gives me more than I think she knows, just by doing all she does.

Go now, jump in to the fun:

Above artwork: "Not Quite Right" copyright 2007, Chrysti Hydek
from my personal collection