Friday, December 17, 2010

Call me Cindy Lou Who

So the holidays are here. Thanksgiving is under our belt (literally) and Christmas is fast approaching. This morning was spent in a whirlwind stuffing bags with tissue paper and truffles for teachers and cookies shaped like chocolate covered stars for the kids. There was hustle and bustle trying to get each of my kids ready for their last day of school before the dreaded and often feared Christmas Break. And I know why it's called Christmas Break, because at the end of it you want to break everything in your house and then have a major breakdown. Well at least I do, but maybe that's just me! For while I do truly enjoy not having to adhere to a schedule and love taking the girls out to do Christmas-y things, it is always with the grinch like character of Autism lurking in the shadows, as the spectrum knows no holiday.
During the month of December, one of the things most families do is take the kids to see Santa Clause. It's in the parenting handbook...you must take your little ones to sit on the big guys lap or you're a terrible parent. So, every Christmas that is what we do. But keep in mind, we are taking two little girls that know who Santa is, what he is all about and that we are going to have to wait patiently in line because all the other kids at the mall want to see him too BUT we are also taking along one little girl who knows the jolly fella's name but doesn't comprehend the whole sleigh full of presents thing, will pout and cry without a care of who's watching and really just wants to touch his beard and eyebrows and wants to do it NOW!!!! Yep, so while Mace and Nat wait with  the typical ancy-ness of children, Camryn waits for no man, not even the one in the red suit and so as Santa's helpers, the entire mall and even Santa himself watch in horror, Brad and I do our best to restrain our daughter while she bites her hands and yells out " I like his eyebrows!!" all the while trying to yank the Christmas bow right off the head of the kid in front of us. By the time we get to the front of the line, we are drenched in sweat and Camryn's Christmas dress in wrinkled, her hair is a mess and Santa looks very, very scared. It's a very merry time!
This year, I received a memo about a Santa setup designed specifically for children on the spectrum. It was called "Sensitive Santa" and basically it was Santa at the mall before shopping hours, lights were dimmed, the mall was completely void of music or piped in sound and all along the line there were areas for waiting kids to color or take a break from standing in line.In a nutshell, it was completely sensitive to the ensory issues of kids on the spectrum. It was a fabulous idea! HOWEVER....it was a fabulous idea that needs to be available more than one morning of the year because you know how statistics show every 1 in 100 kids is on the spectrum? I think they were ALL there that morning to see Sensitve Santa! The memo said it was from 8-10 a.m.so I figured Cams and I would go around 9 to avoid the crowd of early arrivers. And I almost didn't go because everything that could work against us that morning did and it would have been so much easier to stay home, but because I am the mother of an Autistic child and Westshore Mall was making an effort to offer this to my daughter I knew I had to go and support it in case nobody showed. So as we pull in the parking lot I see a few kids and their parents coming out with goodie bags and pictures. Maybe a handful of people. I figured we would be in there twenty minutes tops. HA! When I turned the corner to where Santa was, I could not believe the line! No lie, it had to have been seventy five deep! OMG! A line of seventy five plus parents with their autistic kids infamous for lacking patience waiting to see Santa? I knew I had entered hell. But we were there and Camryn was showing surprising interest in seeing Santa. She kept shouting out "I wanna see Santa! I wanna pet him! I wanna pick him up with two hands!" And while normally that would be the part where the crowd stared in judgement, that day we were amongst friends, though we knew not a single one of them, because they too lived on the spectrum and I didn't have to say a word. We took our place in line and the wait began. And I have to give Cam props because the girl did good! We only had two incidents of walk-by scratchings and one close call of a bowel movement that took her by surprise. But other than that I was so impressed with how well she waited in the line. And I was so shocked to see the excitement in her eyes as she shouted out about seeing Santa. She really wanted to see him!! It made me so happy to see that glimpse of "normal kid behavior". Because Camryn did so well and because I was in an atmosphere where I could let my guard down a bit, I found myself looking around at everybody there. Normally when we're out I am so tuned into Camryn and not taking my eyes off her I am oblivious to the surrounding crowd. But today I knew there would be no judging stares or pointed fingers and for once I was able to be out with Camryn and just be. It was so nice! While I was standing there I began to look around at all the other parents in line. And although they were from all walks of life they all had that same look on their face. The same look I see everyday when I look in the mirror. And I can't even explain what it is, but I recognized it immediately. Something between a look of desperation, exhaustion and deep,unconditional love. I watched all the kids. Autism is such a custom disorder. It is different and unique to each of it's host's, which is why they have the saying "If you've met one child with Autism, you've met one child with Autism". I studied them all, looking at their faces, their expressions, their movements and sounds. Some were very alert and verbal while others were lost deep within themselves. And I knew that for those this event, this waiting in this line, this was for the parents more than the child. For the parents who want their child to be like other kids and have what other kids have even if they don't even know they should want it. I know because I waited in that line for the very same reason.  I saw many parents who only had the one child, no siblings and were doing at Christmas what parents of typical kids do every year and take for granted. Going to see Santa, making Christmas cookies, wrapping dolls and legos and video games to be torn open by eagerly awaiting little hands. But for these parents, who have an only child who does not experience the magic of Christmas, who does not understand baking cookies or looking at lights or setting out milk for Santa, Christmas is not the same. Many Autistic kids don't play with toys. They don't hold a baby doll or play with army men. They don't long for the latest Nintendo game or beg for an iphone. But us mom's and dad's of Autism, we still know what Christmas is and we want to experience it with our children. So we go to the store and we buy toys in vain that maybe, just maybe our kids will play with instead of throw around and we decorate the tree and we read the stories and set out the cookies and go through the motions of Christmas as we know it and hope that behind that vacant stare they are getting it.
 I am so blessed that I also have two other children that are totally healthy and are typical kids. They know what Christmas is, they can't wait for Santa to come, their list is a mile long and I LOVE IT! We bake cookies and go looking at lights and watch every Christmas show ever made and sing the songs, buy the presents, leave food for the reindeer, etc. You name it, we do it! And I thank God I get to experience this with my kids because standing in that line I saw so many parent's who had just one child and that child was trapped inside his body, a prisoner of Autism and the joys of Christmas as a kid would not be the same and my heart broke for them.
So, Cams and I waited for....are you ready...drumroll please........an hour and a half!! Yes, one hour and thirty minutes my friends and then finally it was our turn. The last one hundred and eighty minutes of Camryn pining to see Santa was over and now it was her turn. The "elf" helping Santa came up to Cams and reached out her hand. "Come on sweetie, it's your turn to see Santa!" And the look of fear on Camryn's face was almost comical! She wanted nothing to do with that elf and now that she was within reach, she wanted nothing to do with Santa, his beard or his eyebrows! BUT I did not drive us all the way over here, wait in line for all that time, apologize to two moms for my daughter scratching their kid,and run like the wind to the other side of the mall before Camryn pooped her pants for us to not see Santa! I grabbed Camryn by the hand and led her to Santa's "throne". Santa looked very tired, as I'm sure this was much different from his usual gigs. Cam was digging her heels in the ground, but I managed to pull her up on my lap as I sat beside the big guy. "I haven't seen you in a very long time!" I joked with him. The man in front snapped our picture, Camryn jumped off my lap and in about nineteen seconds our visit with Santa was over. They handed us our picture and a candy cane and we were out the door. One hundred and eighty minutes of standing in line for that? Really?
 I wasn't sure if Cams got the whole thing, part of the thing, or any of it all, but I did and for now that's good enough. This wasn't about Camryn begging me to take her to see Santa. This wasn't about her writing a long list of wishes and asking Santa to bring them all Christmas Eve. This was about me as a mom of a little girl at Christmas time and not letting that mean, ugly Grinch called Autism steal Christmas!

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