Monday, June 20, 2011

Out of the Ordinary

My son thrives on routine, on structured days when he knows exactly what to expect and so knows with certainty what he needs to do to meet those expectations. It may sound like a simple request, but it is something that can be exceedingly difficult to deliver.

As the school year winds down to a close, the school day is increasingly interrupted with field trips, award ceremonies and celebrations. These are things children typically look forward to — typical children that is. The loss of structure leaves a void that makes a day difficult for C.S. to manage.

The end of this year has become even more tumultuous than we would ordinarily expect. We plan to move very soon. We put our house on the market a month ago. We accepted an offer on Thursday, signed paperwork on Friday, put an offer on an out-of-state house and today, Monday, the last full day of school, we've had inspections and continued negotiations and more. In short, our home life has been less than routine, too. All of this is intended to offer our children better quality of life, but for the moment, it is a good bit worse.

And so yes, I've been on pins and needles expecting a complete break down or tantrum at any moment. I've spoken to the teachers, given them a heads up, reviewed coping strategies with my son, everything I know to do. And C.S. is managing remarkably well, considering. But everything is relative, isn't it.

I got a call from the school today. They had a school-wide assembly for award ceremonies, in the gym. The space is loud. It echoes and so is disorienting. Children, peers were being recognized and presented awards with all the anxiety provoking anticipation awards can bring. C.S. requested a break almost as soon as he sat down. I'm not surprised.

But at some point, despite breaks and attempted strategies, he obviously became more overwhelmed than he could manage. The school psychiatrist called to report that C.S. said "I just want to kill myself." They soothed, they calmed, they asked him to explain. He softened it by saying he had made a mistake, that he "just wanted to hurt himself." I suppose the psychiatrist thought that would be reassuring. It wasn't.

My son has difficulty managing his emotions. I know too well he has it in him to lose control. I understand that it is quite common for autistic children to become violent when frustrated or provoked. It is something I have witnessed — a thankfully rare occurrence, but that terrible tantrum, his tightened fists, and his wail has imprinted upon me the most unforgettable images and sensations. As my son grows older, stronger and capable of so many more things, what he might do should he lose control frightens me.

He has never hurt anyone. He has never hurt himself. He has also never said it quite this way either. At the beginning of last school year, at our family breaking point, what he said was "I just wish I was dead." It was this death wish that encouraged me and emboldened me to make a tremendous change. I've spent almost 2 years now enacting so many changes. But here he is saying, "I want to kill myself."

Do I believe him? Do I take this statement seriously? Or is he just "saying something" as I've heard the school psychiatrist suggest? I couldn't help but notice that she backed away from being so dismissive this year.

But yes, what he said, I take very seriously, with immense gravity. After all, after everything that we have done, after the strategies and preventions and crutches we have propped him up with, that we can still arrive at a breaking point and end up there — it is deeply upsetting.

Silver Lining: The school called. They took him seriously this time. There was a special educator available to address his needs immediately. I was able to come to him just as quickly. Together, we turned his day around. And then, he participated FULLY in a class party that involved games, relay races, water balloon tosses and then a water squirter melee. He lost a relay, got his clothes wet — and he enjoyed every last minute of it! For a kid with sensory issues like him, this was nothing shy of ASTOUNDING to me!!

Comment Haters

One of my goals for the year has been to get published. Specifically two books — "The EllaZoo," a collection of poems inspired by my growing daughter and "The Other Woman," a memoir in progress. To get published these days, a successful query letter must show not only that you have written a worthy book, but also that you are a "proved" author. Those who have already published, have built an audience through their careers or through successful blogs are more likely to capture an agent's attention than somebody who has merely written a good book.

In an effort to get published, I posted a number of stories on Open.Salon.com I had moderate success. At least half of these were selected as Editor's Picks. But my real test would be to jump from Open.Salon to the Salon.com pages proper.

When Salon.com posted an open call for "Mortifying Disclosures" it seemed made for me. As a family on the spectrum, we have generated ample material for such moments of extreme public embarrassment. I felt certain this would be the ideal opportunity to make that jump.

I submitted a story,"Positively Pissed Off" and it did. The editors contacted me with a request to cross post it to Salon.com It would be a cover story over the weekend, later to transfer to the Life pages.

The editors warned me in advance that comments could get a little rough. I was not surprised. As a parent of a high-functioning child on the spectrum, I know this territory better than most. After all, I am and my child is the type whose atypical acts likely receive more judgement and harsh commentary than understanding.

It was as expected. There were no shortage of Comment Haters: those who blamed autism on bad parenting, or coddling or a not tough-enough love; who viewed GI intolerances as mere childish capriciousness; who were more concerned about the neglect the dog received conjecturing a lifetime of abuse from a one-line mention; whose reactions openly seethed.

But there was also plenty of support and understanding. There were those who said it resonated with them. A few sent personal messages to say, thank you. That meant a great deal to me.

So, to those who asked, what was the point of this story, and plenty did, it was to offer that vivid moment of sympatico and empathy for those that a story like this might resonate. To describe that once you face the breaking point, even if it seems to come publicly, there can be a feeling of personal triumph on the other end. The point is to push through the comment haters and keep going anyway.

Silver Lining: It was a very public disclosure. I think it really did mean something or make a difference for other stressed-out Moms who read it. It brought the Comment Haters out in the open for all to see the sort of close-minded, ill-informed, seething judgement people load onto children with autism. And of course, I am now, officially, published!

Thursday, June 16, 2011

New Neighbor

Our longtime neighbor Pat was excited to tell us that the new neighbor had moved in and that he had an opportunity to meet her. "She has a daughter, fourteen years old." At this point his 7-year old daughter chimed in, "and she has a swing set!"

A fourteen year old girl with a swing set erected in the first week? This most certainly captured my attention.

While out on a family bike ride around the neighborhood (and out of the house while I cooked dinner) my husband and children found their opportunity to meet the new neighbors. My DeDe seemed thrilled. She had already set a date to ride bikes together with Jen, seemingly an instant friend despite the three year age difference.

They have played almost every day since. Riding bikes, coloring in the back yard, today they began plotting to make a movie. It has been interesting to watch how quickly my daughter has gravitated to this new girl, a real first. And yes, I most certainly noticed that this kind and outgoing gal had a strikingly familiar set of noticeably studied social skills.

I got my chance to meet the Mom today. We chatted about gardens and the plans she had for hers when she made the slightest comment that she had found the perfect spot to set the swing in the front yard which they had erected immediately because Jen "benefits from constant motion." I suppose I was a bit bold when I replied, "Yeah, I wondered if it might be for sensory needs. My son is a sensory seeking little guy." I think she was a bit surprised at first. But when C.S. wandered over, stepping on every stone, tripping atop her low knee wall and then hugging her, she relaxed obviously familiar with this territory. Our conversation could have continued comfortably for hours, but I had to go back home to make a GF/CF dinner. I have a feeling we'll pick up somewhere where we left off very soon, without missing a beat.

We have a new neighbor, one that makes this neighborhood feel more like a community of mine than it ever has before.

Silver Lining: Play. Regular unscripted, impromtu summer play for the kids. And chit chat about the mommy decisions we make as we struggle to just raise our children. That's the July I am very much looking forward to!!!

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