Wednesday, December 31, 2008
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?
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
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.
Friday, December 05, 2008
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.
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,
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
Above artwork: "Not Quite Right" copyright 2007, Chrysti Hydek
from my personal collection
Friday, October 17, 2008
"There is a huge boom in autism right now because inattentive mothers and competitive dads want an explanation for why their dumb-ass kids can't compete academically, so they throw money into the happy laps of shrinks…to get back diagnoses that help explain away the deficiencies of their junior morons.
I don't give a [bleep] what these crackerjack whack jobs tell you—yer kid is NOT autistic. He's just stupid. Or lazy. Or both."
Well. I can see why thousands of parents of spectrum kids are outraged at the suggestion that their child's struggles, not to mention those of their whole family unit, is a result of self-absorbed and uncaring parents. The public outcry was followed by statements from Mr.Leary and his publicist that were presented as an apology:
"The bulk of the chapter deals with grown men who are either self-diagnosing themselves with low-level offshoots of the disease or wishing they could as a way to explain their failed careers and troublesome progeny.
Of course, this entire misunderstanding can be easily avoided simply by doing one thing—reading the book. Taking one or two sentences out of context— especially when it involves an entire chapter devoted to the subject—is unfair and ill-advised.
Too often in this country, everything gets reduced to simple sound bites and very very often those sound bites are not truly representative of an author or artist's point of view."
I can easily agree we can be easily provoked by the soundbites we are fed. What disturbs me is the suggestion that his ill-concieved "humor" about families dealing with autism will be made clear to me if I would just read the book. If I buy the book, and it still is not clear, do I get my money back? How is it only the inflamatory lines have appeared in mainstream media? I would have more readily embraced the idea that this was a true apology if the whole chapter had been offered up for a frame of reference, or at least a few more lines from it. Not the whole book; I know he wants to sell the book and defend his right to do so. I suppose he is also within his rights to say nasty things and not apologize at all. I wish he would try harder to redeem himself, because I almost feel like he insulted me twice: once for my inept parenting, and then again for taking his unpleasant words "out of context" and telling me that to do so is "unfair and ill-advised" . I just cannot fathom any context where those words would not insult me. Yes, the words from his book shocked and hurt me. They made me want to call him on the phone and say, listen, that's really not how it is for most of us. For most of us, it hurts and is hard and is scary, and our child's wiring was not our doing, but a biochemical anomaly. For most of us it has meant years, day after day, of a high intensity reality that often defies description. To have our daily lives made light of, dismissed, mocked, belittled...? Ok, that stings.
What also bothers me is this. Mr.Leary is an abrasive, insenstive comic, and that is his approach to the medium... but he's also smart enough to know this chapter would be focused on by insulted and angry families, as well as folks who doubt the veracity of the autism diagnosis. He could easily bank on the media and the public to shine a light on his book either way, and here it is, in the spotlight. The statements made in the book seem calculated to go beyond "rub-you-the-wrong-way" comedy and into a highly manipulative zone. Provocative comedy is nothing new, but this smacks of a devious way of securing free publicity, not a sincere desire to get people thinking about Autism more critically. What disappoints me, too, is that I had a lot of appreciation for Mr.Leary before, for his community involvement and his comedy, but I lost that when he chose to present Autism to his readership in such an ugly manner. I am sad about that.
I do not know the exact cause of my son's autism, but I do know it is not due to my parenting skills. I also know it is the strength of my parenting skills that will help him successfully live as an autist in a neurotypical world. Believe me, I never dreamed I would be facing such a task as a mom. I thought I had signed up for the perils of plain ol' Mommyhood. As an added adventure, I got a special kid did not come with special training classes for mom! Every day brings challenges, but we face them, do our best.
I take my job seriously, but still have a sense of humor. I enjoyed a lot of Mr.Leary's material. This, sadly, never evolved past meanspirited into funny. And I am thinking no apology can ever get it there.
Friday, October 10, 2008
Friday, September 26, 2008
Please take a moment to send good thoughts and prayers her way...whoever she is, wherever she lives. She is one of so many fighting this battle.
And please, take a moment, click here. One click is all it takes to provide free mammograms for those unable to afford them:
And please, lastly, be vigilant. Take care of yourself. Whoever you are, wherever you are.
Monday, September 15, 2008
How nice is that?? Here is my favorite part, of course, which is to send you wandering into the blogosphere to see some blogs you might not have seen before...so here goes! (Oh, and for those I have passed the award on to, here are your instructions...)
1.The winner can put the logo on their blog
2. Link the person from whom you received your
. Nominate at least 7 other blogs
4. Link those blogs to yours
5. Leave a message on the blogs of the people you nominated.
1) NyteRayn's wonderful ElementalCraft blog, where you will find an array of crafty goodness, tutorials, book reviews and more. Plus she makes adorable stuffies!
2) IkeaHacker...you would not believe what people come up with! (I am extra fond of this site because they showed a hack of mine once!)
3)Deb Silva will keep you Creatively Amused; she is a wonder! Felting, painting, collage...I love her work.
4) Wierd and Wild- check out MsKitty Fantastico!
5) The ridiculously talented Paulette Insall
Ok I know I am supposed to put two more, but I am feeling kind of crummy today, so maybe you can help me out? Please leave a link or two in a comment, sites you like that I might like too, and I will chose 2 for the remaining slots. For now, I am going to grab 40 winks. ;)
Thursday, September 11, 2008
Citizens of 90 different countries.
One September morning.
Remember September Mail Art Call:
Remember September is a mail art project which was developed by Gail Ellspermann to commemorate, on an annual basis, the tragic attacks on the United States on September 11, 2001. The idea is to decorate an envelope with artwork remembering and honoring the victims, rescue workers, and countless volunteers affected by 9/11. Then, bring it to your post office on September 11 and ask for a hand cancel.
The envelopes will never be opened so you may include a private note, poem, or prayer as part of your memorial. The envelopes are being collected and will be exhibited at various venues.
Create a piece of "mail art" on any size envelope which is relevant to 9/11, the victims, heroes, and/or events of the day.
Use any type of media, such as: collage, digital art, crayon, marker, pencil, paint
Address your envelope to: Remember September, PO Box 793, Katonah, NY 10536
Mail your envelope on September 11, 2008, if at all possible. Please mail no later than 9/18/07.
Include your name and snail mail address on the BACK of the envelope to be included in a mailing of posters of the 2008 submissions and to be entered into a drawing for a free CD of all images (100 will be given away)
Monday, August 25, 2008
I spent the last week immersed in it, up it the Green Mountains of Vermont, revelling in the cool breezes up there on the mountainside trails, wandering alone through lush, emerald woods on curving pathways through the ferns.
I spent time gathering up wildflowers by the roadside when traveling, tucking them into a water bottle until I could bring them back to put them by my bed.
I enjoyed an afternoon strolling through the neat lines of vineyard arbors, their branches dressed with new fruit and scores of japanese beetles, who clustered on the leaves engaged in indecent insect acrobatics.
I drew in deep breaths of the fresh wind that danced across Lake Champlain in the bright sun, the blue water dazzling, the blue sky as startling as a happy shout, and I ran my eyes along the Adirondack mountains that line the distant New York coast.
I watched an evening thunderstorm consume the mountain opposite our balcony, rolling in dressed in ominous purple and indigo robes and shutting out the twilight sky;
in the morning, a shroud of heavy grey cloud had been draped gently over the mountainface, and the rain was still falling, softly this time.
All these things I try to fold up and tuck into the corners of my mind like a colorful quilt for when it is cold outside, for when the trees stand naked and the air stings with a frosty snap, and the world is painted in blues and greys.
Friday, August 08, 2008
Soon, hailstones the size of hazelnuts were bouncing as the hit the lawn, clanging angrily on the air conditioners, and dimpling hubby's car with the impact of their descent.
They splashed into the massive pools of water that had appeared in our lawn, making it look as though they were stocked with leaping trout.
The hail brought with it a fiercer wind, and between both forces, leaves were being shredded all around, torn from the trees and whirling madly in the maelstrom: I felt like we were in some horrible snowglobe-slash-salad spinner, as I watched the thousands of green scraps hurtling in circles through air now white with density of the rain.
The trees down the street became invisible. And I admit, I got scared. This was fury I had not seen in a storm before. We sent the children to the basement and closed all the windows. We watched the lights flicker repeatedly, and hoped the cats had found a safe place to hunker down, since calling them at the start of the storm had proven futile.
In the backyard, muddy water sluiced through from our neighbor's yard, like a frantic river trying madly to outrun itself, and our walkway of stepping stones vanished under the rising water.
When things finally quieted down, I took a look at the astounding mess outside. Shredded leaves clung to every surface like wet confetti, and hailstones had accumulated at the edges of walkways and steps, in the wooded areas behind the house.
They even floated like ice cubes in a cold drink in the puddles on the patio.
Large branches had been beaten from the trees;some hung akwardly from the roof of the shed while others were scattered over the lawn. The air was heavy with the smell of earth and fresh greens; the perfume of pines and poplars, the chlorophyll beaten out of them and into the air.
It was magnificent, and humbling, and had us on the edge of our seats for the whole show (the cats most of all, who were ecstatic to be back in the warm house when the show was over.)
Nature is a grand diva when she wants to be, and when she wants to take a walk on the wild side, sometimes we have no choice but to tag along.
Wednesday, July 30, 2008
Artist: Corrine Davis
Artist: Kathy Ogg
Saturday, July 26, 2008
My feet have served me well in my life; I should be proud to claim them. They have allowed me to climb trees and fences, to rollerskate and spring from the high dive, to bicycle and run on the beach, tiptoe into the tide. They have walked me across a stage to my diploma, down the aisle to my husband, and up and down the corridor of the maternity ward once, twice, three times for three sons. My feet are worthy of honor, yes indeed. However, they also deserve to be pampered in a brief Photoshop session to preserve their dignity!
All this because I wanted to share what I made. I saw these creations in various Etsy shops and thought that they were a very cute idea. They are called barefoot sandals. Essentially, a bit of jewelry for your feet. They resemble flip-flops, but are soleless, which I love, since flip-flops hurt my feet, and I prefer to go barefoot anyway.
So, a little gift for my feet, to honor them. I will dress them up next weekend, and they will dance around the fire in the forest where my tribe and I will meet to celebrate the summer.
Monday, July 14, 2008
I am very honored indeed, to have been given this award. The fact that my blog is of enough interest to even be read brings me pleasure, but to know it is consider worthy of special recognition from my peers brings me no end of happiness. A heartfelt thank you to sweetmango for the honor. She has two wonderful blogs worthy of your time, especially if you love beautiful art, and if standing up for the oppressed, human and animal alike, matters to you. Here is one of her paintings; isn't it breathtaking?
copyright sweetmango 2008
Now it is my turn to pass this award on to 7 bloggers who inspire me, and whose posts and creativity I think will inspire you, too! Go now, and visit ( and comment!):
Mallory Matson is an exceptionally talented photographer and writer. Don't let her age fool you; her blog is insightful and rich with poetry (and if you are lucky, Jeff Buckley or Joni Mitchell will be playing), and her photostream is riddled with picture after picture of evocative imagery and beautiful faces. I cannot wait to see her continue to grow as an artist; her talents already shine so bright.
copyright Mallory Matson 2007
copyright Mallory Matson 2007
Chrysti has long been an inspiration to me; I consider her a sister-in-art. I am blessed to have her art showcased in rooms around my home, and am forever in awe of her ambition, growth and accomplishments. Be sure to check out her shop on Etsy, and here.
My friend, the wonderful and intelligent Debra, makes the most delicious bracelets and shares sparkly bits of wisdom with the world...you can visit her here and see the wrist-candy here!
For anyone who likes a good giggle and a bit of NY meets Hollywood dish, this is the blog for you. Dish is my bestest friend from wayyyy back (think 80's hair) and is a fantastic NYC writer, diva, and all-around goddess.
Recently Rose honored me with a Web Award, so it is nice to be able to bestow one back. Her blog, A Walk in The Woods, frequently leaves me hungry for a fresh repast, and her Etsy shop has some lovely lovelies to browse through.
One of my favorite people and artists, the talented Gene Black lives in the ever-hospitable South where he paints, doodles, and quilts. Like me, Gene is a Sharpie Scout and chocoholic, 2 of many reasons why he is dear to my heart.
And last, but certainly not least, I cannot describe Spike's blog better than she does, so here it is : "a madwoman's lunchbox" -- a melange of colors, textures, or styles that do not commingle gracefully. "Madwoman's Lunchbox" -- a blog about fiber, photos, and stream of consciousness. because, after all, that's just what the worldwide web needs.
So now each of these bloggers gets the pleasure of selecting favorites blogs of their own to honor!
The rules of accepting are as follows:
1) Put the logo on your blog
2) Add a link to the person who awarded you
3) Nominate at least 7 other blogs
4) Add links to those blogs on yours
5) Leave a message for your nominees on their blogs.
Now Go! Read! Comment! Celebrate Bloggodiversity!
Friday, July 11, 2008
One woman's treasure another man's trash? Fair enough, I suppose.
I had a friend once tell me, "You see potential in everything! I never would have thought to make THAT out of THOSE!" Alas, my skill for seeing potential is not as well-honed as one might think. I have seen what I thought was "potential" in dying houseplants, ugly skirts, broken appliances and unsuitable men. So, instead, I like to think I am some sort of ambassador of Second Chances.
As is with most of us, my life has been frought with moments that really could have used the power of the Do-Over, if that option were available at the time. It has been rife with opportunities to forgive and be forgiven, to give it another go, to reapply for admission, to give back and to recycle.
Second chances (and third, and fourth) are important gifts we give ourselves and others. There is no force more powerful in the universe than forgiveness, and forgiveness is a second chance of the spirit. It is a laying down of burdens. Forgiveness is not condonment or approval when wrong has been done; it is setting yourself free from the weight of bitterness.
The act of forgiveness is simple, which is not to be confused with easy. It can be unspeakably hard. In some cases, for some folks, impossible. The one thing I have found in my own life is that it is a tool I have had to reach for over and over, and it is the one that does the best repairs, yet I am reluctant to use it on myself. Oh, we are hard on ourselves, many of us.
How do second chances apply to art, you say? How convenient of you to ask; I have the answer here. A picture frame for a beloved fellow Circus Freak of the EC, Maggie. Adorned with the flotsam and jetsam of the creative tides that wash into my studio, this piece is a showcase of repurposed ephemerma and embellishments. Broken jewelry, orphaned game pieces, single buttons, used postage stamps, bottle caps, and even a subway token, all share here a common bond: the second chance.