I Stim, You stim....

There are enormous misconceptions about Autism, and those who have this disorder. One of the many is Stimming. My son has been stimming more these days, so it's one of the many topics I have been "perserverating" about.

For those who may not be familiar with this little gem, stimming, to quote this generation's Encyclopedia Brittanica, Wikipedia, " is a repetitive body movement that is hypothesized to self-stimulate one or more senses in a regulated manner. The term is shorthand for self-stimulation, and a repetitive movement, or stereotypy, is referred to as stimming under the hypothesis that it has a function related to sensory input.

<sup>Simply put, flapping, rocking, vocal noises, visually stimming through the corners of your eyes, are all classic examples of what many people who have sensory processing issues,(which would include those with Autism and other developmental delays and neurological issues) do to help calm or self regulate.
My son is a slap happy kid who likes to harmonize as he quickly smacks the side of his leg. If he were on stage with a bango, during a ho-down or emceeing a Square dance, or doing the Hambone dance, it would be completely appropriate. Hell, it would be amazing. But this is not when he chooses to go all out. He does this when he gets excited or anxious. In the playground, or in class, or during an assembly, in the supermarket, at the movies, in a resteraunt. You want all eyes on you in a minute, this is all you have to do...put your hand on your thigh and let it rip, real fast, humm a few bars of something catchy and you have the floor.

Think stimming is only something people on the spectrum do? Think again. My nails are gone, chewed completely down, and now I'm working on the sides of my fingers....you would think they were chocolate. The hair many like to twirl incessantly, absentmindely...the foot that is continuousy kicked while hid under the desk....the fingers that strum on the tables, the pencils that follow the beat.....the soft rocking from side to side as you wait on line...the tapping of your toes.....all examples of stims. The line that defines what is appropriate and what is not, what is subtle, what is functional and what hinders " normal" life can sometimes be fine, and in some cases subjective. So it becomes my job to not only figure out why he is stimming more lately (could it be yeast again, could it be something that might be bothering him? Could it be a nutritional deficiency or an infraction? Could it be a new demand placed on him?) and then to find a way to help Gabe transition into a more subtle stim that would fulfill the need he has to release the anxiety and excitement in a way that would not be disruptive to others. Luckily, because Gabe is now verbal, he can tell me now that it's something inside him that HAS to come out. It's the form HAS takes that needs to be rethought.

Here's the part that gets me. For all the live and let live, for all the religious talk, for all the political correctness, and the no tolerance for bullying bull in school, there is still a long way to go when it comes to respecting those with disabilities. There is still that us and them mentality. When it comes to people on the Spectrum, it's the intensity of how we take in our world through our senses, and how we are able to communicate it that differentiates us. We all stim, we all perserverate, we all need to get that excess energy out, we all need a way to ease our anxieties or deal with our excitability. We are not always appropriate. Our behaviors more often than not, leaves little to be desired. How different are we really when it comes right down to it? I have the audacity to suggest that Gabe should stim in a more subtle way and of course less frequently, meanwhile I say this nailess and pretty soon fingerless at the rate I'm going...with a good 20 extra pounds added on and hair twirled into knots so big I can tuck it under and call it a French Twist....though we all know it's a Stim Twist.

My son humbles me. Nothing like a magnifying glass held up against you to help you see the connections. The gene pool this kid was doing the back stroke in, was perhaps not the most filtered and purified.....at best it's questionable. I am half of the proof.....
But he is remarkable none the less. Slap happy and all..........hey, at least he now keeps his clothes on!</sup>

Autumn

Funny how the warmest of colors are lured out of the greenest of leaves in the crisp nip of fall.......
I hate this particular change of season. I suppose I too have problems with transitioning....this station of seasonal cycle brings me back to the stations of the cross, and all those Holy Thursdays spent walking the perimeters of the church, under my mothers warning eyes, and the priests monotonous drone. I know this may seem a little over dramatic for most, but Autumn is the Last Supper. Autumn is the betrayal. A few short weeks of red and yellow leaves riding brisk winds, pumpkin patches, corn mazes, hay rides, and decorated porches and lawns....and then it's over. It's grey and cold and barren. No leaves on trees, no flowers bloom, no lush green grass...no beach filled days, no firefly nights...no sitting on the porch with a good book.... ."no New Years day to celebrate, no chocolate candy hearts to give away".....Stevie Wonder keeps singing in my head.......

I am not a winter person. I am not someone who enjoys the snow, or thinks that anything cold, wait, let me rephrase that, most anything cold, could possibly be invigorating,...it's absolutely torturous.

But then, I have these 3 wonders that lose themselves in piles of leaves......
And get excited about Halloween,carving pumpkins, and costumes, and spooky walks and everything ghoulish and slimy.......They love the idea of family gathering for Thanksgiving at our house. They dream about Christmas for most of the year.....They believe in color. They believe in light. They believe in decorations, in trimmings, in details. They believe in magic. And while Autumn betrays me, it inspires them. It's all about the ultimate sensory experience.

I look over. Resting against the chair is a bag full of theatrical makeup, zombie masks, spiked choke collars, clown hair, derby hats.....I am Thursdays child. I am supposed to be full of grace. Holy Thursday....I'm still walking the perimeters, only this time this house, this neighborhood, this time, this life takes the place of church. Warning eyes are now mine. The monotonous sermon is nothing more than a negative monologue....How ridiculous to not embrace the beauty of fall because I dread the barren nature of winter. What a sin. I suppose nothing that can be resurrected really ever completely died. Perhaps this holds true within me too.....As worn as I have felt these last few weeks, today, in the midst of chores, homework, running errands, barking orders to pick up rooms, cooking, cleaning, laundry, I looked around the dinner table in awe. My family, loud, boisterous, funny, loving, tender, mischievous, sometimes careless, sometimes carefree, sits enthusiastically sharing a days worth of thoughts and experiences over an arroz con pollo. This is supper, hopefully not the last, but definitely present.
This is what is real, what is worth the sacrifice, what is worth believing in. This is my Christmas morning on an Autumn evening. Autumn, I am beginning to understand, never betrayed me.
My fears continuously do.

All falls back into place. The table is cleared, the yelling about the rooms not being picked up resumes, dishes are washed, dogs walked, showers taken, teeth brushed. The house is quiet for a few hours. Outside my window I hear my windchimes, like the leaves, riding the breeze.

Winds of change?

Transitions.....transformations.........

Perhaps I do love the Fall................

Ah to the choo....

There is nothing like waking up to the lovely soothing sounds of a child retching in the wee hours of the morning. Why, you just know it's going to be a wonderful day of laundry, constant cleaning of bathroom, temperature checking, soup making, motrin dispensing....ah, joy!!!

So I call up the school to let them know Gabe will not be going in, and the questions start..."do you think it's swine flu?" "Does he have a temperature?" "Is it high?" "Are there any changes?" "Is his brother here?" "Is his brother fine?".......Amazing how it all spirals out of control. It's allergy season, the weather is changing, everyone is back at school on top of each other, things are bound to be passed despite the daily bathing in hand santizers, constant hand washing, coughing and sneezing into elbows, face masks, etc...... Yet there is always that panic, there is always that fear because every time you turn on the TV or the radio there is talk, and that leads to worse case scenarios which in turn allows sanity and common sense to take a back seat while we envision the worst of the worst.....So I get a second call from the school, this time middle school....Will is feeling sick, his stomach is upside down, the nurse is nervous. "I have Will here, he says he isn't feeling well, given the threats of the swine flu I think it's best if he goes home, we wouldn't want to take any chances."......
So now the flu is a terrorist dropping threats....
And I have 2 sick kids home........
As long as I have enough toilets, toilet paper and toilet bowl cleaner I should be fine.......I hope....

Truth is it's always heartbreaking to see your child struggling, not feeling well, out of sorts. It's never easy to relax and let the child heal without turning to every home remedy, every over the counter relief meds, without calling the doctors office at least once to give them the heads up that they will probably be seeing you by the end of the day. It is what it is in this case, until it passes, and when it does, child # 3 will probably feel the need to hug a toilet and lay still in bed, under fluffed up covers dosing off amidst an afternoon filled with classic cartoons and warm liquids ........

Is it the seasonal flu, is it swine flu? I don't know yet, it's too soon to tell, but I do know that either way, soups on, the boys are resting, Boomerang is on the tube, and the thermometer and the motrin stays close at hand.......ah, how lovely, sun is shining, birds singing are on their way to warmer shores, the air is crisp and the autumn colors especially sharp and brilliant......where to stick that thermometer........................................

Hope, noble, is necessary for Peace

I suppose the surprise announcement that President Barack Obama won the Nobel Peace Prize will have some cheering, others questioning, and a few protesting. I imagine the speculation of whether he has done enough to merit such an honor, if the few months of his presidency could compete with the accomplishments of the other candidates, would lead to side by side comparisons and subjective opinions of what then does this award mean, and who really deserves it. So I decided before anything I would look into the Nobel Peace Prize to find out what it's about. Here, simply put, I read and I quote "according to Nobel's will, the Peace Prize should be awarded "to the person who shall have done the most or the best work for fraternity between nations, for the abolition or reduction of standing armies and for the holding and promotion of peace congresses."

^{It's easy enough to say that when the race for election started we were all begging for a change. Our state of mind collectively, as a nation, was as defeated as our economy and our place in the world as leaders. Our previous administration failed all of us, not just Democrats, not just Republicans, not just a certain class of people, but all of us. We needed to believe in our leaders again, at least have a little faith. We needed to feel like we can get back up and be strong and confident and well respected once more. We needed to feel that we would be able to find ways to survive the recession, keep our homes, strengthen our resources. We needed to believe that We too had some say, some sense of control over our own destiny. We were ready to vote someone in who listened, who was thoughtful, who had a more balanced sense of community and fairness. Someone who understood that we were all equal not just under the law of the United States Of America, but the unspoken law of humanity. Someone who knew our place within the world. And so, when Obama spoke for us instead of to us, when Obama kept his composure and didn't succumb to the nasty tactics we have become used to from both sides of the house, when Obama said change is attainable, YES YOU CAN, we did, we voted him in. The world cheered. As it turns out, they needed a hero amongst us too. They needed us to have a leader that respected them. Obama was not just our hope, he was their hope too. I supposed when the world listened to Obama speak, they heard a sense of fairness and truth, accountability and firmness that inspires hope. Finally there was someone in charge willing to listen and ask questions, be reflective. In a time when it all seemed so dismal, here was someone willing to do the unthinkable, he was willing to actually think things through. He inherited the biggest mess any new administration has had to clean up, multitasking would still not cut it. Not only did he have this to straighten out, but in this culture of quick fixes, we expected 8 years worth of damage to be} restored to it's glory in 8 weeks. Yes, it's true there is still a war going on...Yes, it's true the economy is still fragile, though better than it was.....Yes it's true, we are still in a complete mess.....But dignity and integrity have been restored to the office of Presidency. Our President is no longer the worlds punchline, or ours for that matter. That makes a great difference.

So do I feel that President Obama deserves the Nobel Peace Prize?
I believe that the true road to Peace lies within the willingness to fairly compromise without compromising your soul. I believe the road to Peace lies within respect, responsibility, openness, contemplation, honesty, accountability. I believe the road to Peace lies within understanding. I believe the road to Peace lies within honoring human rights. I believe the road to Peace begins and continues with hope, without it, we are lost. So yes, without a doubt, I believe President Obama deserves this award. Now I HOPE he can continue to live up to it...........
Yes He Can...........................if we help him...........

1 in 91

For the past 6 years I have been able to rattle off Autism stats with the same accuracy as an avid baseball fan can spew batting records, career averages, game highlights.......Except, I am not of fan.

When many of my friends sons were diagnosed, back when the stats were still 1 in 10,000, there was not much out there for parents. The support was questionable and because they rallied, when the numbers got more frightening, parents just like me had organizations to turn to for information, guidance and help. In just 8 years between my friend's son diagnosis and my own son's, the stats went from 1 in 10,000 to 1 in 166. Still, it didn't send chills down too many spines because apparently it didn't merit more funding towards research and therapies....When it became 1 in 150, movement started. Now it's 1 in 91....that enough would be beyond frightening, but what scares me more is the attitude many doctors and Government agencies have taken. This is not necessarily just better diagnosis. This is a very real problem, and it keeps growing. The stats on learning disability is 1 in 6, how are we addressing this very real situation in classrooms that are not adequately funded to deal with the influx of special needs and learning disabilities? What about the teachers who need more support and training to be able to be successful? This is a complete generation of people being affected. What is going to happen when these kids age out of a system that was never really strong enough or funded enough to help them fulfill their potential? What is going to happen if the stats continue to climb?

The push to scare everyone about swine flu, the hurry to put out vaccinations that have not been thoroughly tested, but the incredible dismissal of this very real disorder baffles me. When parents scream they want safe vaccines with no preservatives and a more rational vaccine schedule, we get belittled and wrongly accused of being anti vaccine. Yet,
knowing that many of our children regressed after vaccinations into this disorder, knowing that children do die because of vaccines, knowing there are too many cases of vaccine injuries (Gardasil alone is ridiculous) knowing that there has been a link by several researchers from Stony Brook, Thoughtful House and University of Kentucky, the Pittsburgh school of medecine connecting the Hepatitis B vaccine given at 12 hours of birth and brain damage in males, why then is there such hostility when a simple demand for a safe vaccine, for safe pratices come into question? Shouldn't vaccines be safe for everyone? Isn't that the purpose?

Time is running out. Our children are aging without proper support, funding, therapies and treatments available to them. The price of Autism is exorbitant, staggering, breathtaking, because it is so emcompassing, so pandemic. There is a term out there used in every IEP in every CSE meeting, basically that the education given to our children be "appropriate and meaningful" which obviously leaves a very philosophical and open interpretation as to just what meaningful and appropriate is, because as we parents have found, the school districts have a very different definition of both.

We all look for the meaning in our lives. We all question what is appropriate. We all want to matter, we all want to make a difference. Why would anyone think anyone with Autism wouldn't want the same thing? They worth the research needed and the funding needed to help them reach their potential.

Gabe was almost 5 years old when he said he loved me. We were in King Kullen and he was strapped in the cart. He barely had any language. As I was walking down the aisle, I looked down at him, he smiled and said "I love you"....and I soared. I had been waiting for so long, and I got an opportunity to hear something so many moms would have given their body parts for, and I more than heard it, I felt it....He looked at me and said he loved me, and then just like that he retreated again inside himself. But he was there....I knew it, I knew it all along, he was there......

Meaningful and appropriate.....well, the appropriate thing to do is to find a way to help this community lead meaningful lives. I would love to see the stats on that....................