A mom's blog about the mostly ups and sometimes downs of raising a child with autism.
Monday, November 22, 2010
Here Comes Santa Claus
Last Sunday we took Sean to see Santa. This time we did it differently. No giant shopping mall where the line snakes for miles, weaving through ropes with families pressed against other children and parents anxiously awaiting their turns to tell the big guy in the red suit what they would like for Christmas. We have done this in the past. Sean has some really good strengths. Standing in a long line, packed like sardines, waiting patiently is not one of them. Usually my husband and I would take turns chasing him under the red velvet ropes, catching him mid-hop and pulling him back into line as he threw elbows and arched his back. We were the family in line that seemed to be standing on an active earthquake fault line – swaying into others, my hips and shoulders brushing into moms and dads and my constant apologies falling flat. It got to be such a stressful tradition that we were ready to say the heck with it.
Luckily, we got word of a Santa that was going to be available to kids with disabilities, including autism. This would have to be one understanding, patient, tolerant Santa. The thing with autism is that if you have seen one child with autism then you have seen one child with autism. Autistic children are like delicate snowflakes, similar and yet no two are ever the same. Who is to say how each child may react? Often their reactions differ greatly.
The clinical director, Kathi Calouri and the program director, Eric Hamblen at PACE Place in Beaverton, Oregon (http://www.paceplaceinc.com/) arranged to have a Santa for their many clients who, year after year, have struggled with taking their disabled child/children to see Santa – a typical tradition that most take for granted. In fact, most families with children who have autism don’t even bother. The unpredictability coupled with the lack of understanding and tolerance can make a holiday must-do into a CHRISTMAS NIGHTMARE. It’s no fun when your child hops around Santa and stims, or bites Santa or screams at the elf and the others in line. It’s even harder when your child is not a feisty three or four year old but a growing eight or nine year old. As the parents of these children we can see the fright building in their eyes and the tiredness in their bodies from trying to hold still in the noise and crowd. We are constantly preparing for the impending storms that hit hard while out in public.
We paid for a private fifteen minute time slot to bring Sean into PACE Place. Kathi and Eric were on hand, along with a photographer, a wonderfully charming Santa and an Elf. There was no line, no others milling around waiting for their turns and my child’s excited hopping and yelping was welcomed. We had the opportunity to take a family picture but since my oldest son was at a hockey game and I came in sweat pants and a hair that was in desperate need of a brush, we decided to just get the pictures with Sean. The photographer took a dozen pictures while Sean talked to Santa and hugged him repeatedly. There was no rush, no uncomfortable glances among the others and no heartache for my husband and me. In fact, we were quite happy to see our boy participate in an activity that was slowly becoming impossible to accomplish. Our handsome boy was all smiles enveloped in the arms of Santa and whispering that he would like a Jakers DVD for Christmas.
I am thankful that there are people in this world that share their heart and compassion with families like us – that understand how tricky and lonely the path can be that we must travel and are happy to offer an elbow and share with us a knowing smile. As we drove away, my husband said,
“I’m glad you signed Sean up for that. It’s good to see him so happy.”
Autism makes life a lot tougher for all of us. But it also makes moments like these more beautiful and tender -- a glossy photograph capturing my boy’s smile and happiness while being held in the arms of a kind Santa is one of the most precious gifts.
Currently, I am fulfilling the duties of Mom. Before this role I used to write and read poetry at the Poetry Slams at the Green Mill in Chicago and other cafes in the city. I am trying to find my way back to that, trying to incorporate this journey that I am on with my love of words and poetry.
I have two great boys, an equally great husband and a fairly lazy, unenthused cat. Add to that, I have lots of good, creative friends (one that manages to get me to go to the Shakespeare fest in Ashland,OR every year!!) and wonderful parents and siblings.
I am trying to learn to live in the moment, to jump in without too much analyzing and thought. This is new to me as I have always been considered a "worry wart". Wish me luck.
What is the purpose of this study? The Simons Simplex Collection (SSC) is focused on families with just one child with autism, called simplex families, which will provide insight into the most common and unexplained form of autism. This comes at an exciting time in history, in which breakthroughs in gene mapping, advancement of high-tech tools, and the latest brain research present a unique opportunity for progress.
Whom should I contact to get more information? Emily Champoux, Project Coordinator Toll free: 1-800-994-9701 or 206-616-2889 Email: firstname.lastname@example.org Additional SSC information available at: http://depts.washington.edu/uwautism/research/simonssimplexproject.html