Tuesday, January 11, 2011


OK so it's been awhile since Ihave posted anything. First, I need to remind everyone including myself that I am mom to a very busy, challenging, yet beautiful and lovable little boy who has Autism. His life keeps me moving in various directions simultaneously. I don't mind, it's what came with the territory when I gave birth six years ago. Now, I don't want to complain, but being an Aunt is much easier than being a Mom. Especially when Autism is involved. Take the holidays for example. When I was simply Auntie, I would excitedly spend the night at my sister's house with her two kiddos, and help her wrap and set the stage, and of course bring all the coolest of presents. Morning would bring a tornado of excitement, and much revelry with the family. Memories I will have engraved in my heart forever. Now, that I am the mom, the holidays have completely changed for me. First, one should note that for someone with a sensory disorder and a penchant for rigidity the holiday chaos begins the moment the tree goes up, (which for us is the weekend of Thanksgiving). I, being a new Autism mom didn't get this at first. For three years in a row, Ben couldn't handle the tree being in the room, and would repeatedly would knock it over. The year he was four, he was constantly knocking the tree over and riding it like a horse. It was so ridiculous I decided, to hell with the Christmas tree, and kicked it out. But that was just the beginning that year. One big enjoyment for me every year is attending Christmas Eve service. That year I decided that we wouldn't go. Going anywhere that required sitting and being quiet just wasn't part of our life. Putting it mildly you know when our family is around. We come with chaos. At the last minute Ben was in tears that our extended family was going to church and we were not. This broke my heart and I glanced at my husband for back up. His gaze came back with the clearest of communication, "Absolutely Not". To make a long story short, I took him myself, in our sweatpants, and it ended up being a delightful surprise. In extreme contradiction to years past, there were no time outs, no chasing a child down the aisles, no stares from old fashion people stuck in their own belief patterns. Ben sat quietly in his seat, and was an Angel. On the way home he asked, "Is Jesus a Little Lamb?"...needless to say that night taught me a lot about faith, in more ways then one. Next we returned home for one of the most exciting parts of Christmas. Setting the stage for the big guy with the white beard. Lots of cookies for Santa and tons of Reindeer food. Unfortunately Ben was too maxed out. Spending time with the family, then church was too much, and the panic attack began. Getting out of the car, he started kicking and punching me, and screaming, "No Santa, No Santa". I was surprised, and couldn't understand, after all isn't Christmas like a wedding? One of the biggest most important days? And who the heck doesn't like Santa anyway. All in all, after getting him settled down the problem was this. He didn't want some guy, with toys or not, rummaging around his house while he was sleeping. And, once I thought of it, it made sense. It does sound kind of creepy. The next day I was so proud of how beautiful the house was. How fantastically perfect each gift was, and after a night without sleep I was beginning to cook my award winning, (husband approval award) brunch. Then he awoke. You could feel his tension with every step he took down to living room. Like an explosion, he started screaming, "I hate Christmas, I hate Christmas, and I'm gonna kick your butts". Stunned, Jeff and I stood with pale expressions. We're supposed to be a Norman Rockwell family, and the in-laws are almost here. Now what? With coffee in hand we settled onto the couch and waited for Ben to embrace the joy of Christmas. That year it took four days for us to embrace. He would open one toy at a time with caution. Some were greeted with negativity that went flying across the room, and some he embraced with love. But I tell you this story because as I reflect on our holiday that was just a few short weeks ago, I realize that, WOW have we come along way. That Ben has come along way. This year, there was no church service, and we didn't attend the family gala at my mom's house. Yes, I am heartbroken over this, but I am realizing that Ben just can't handle it. It's not some romantic thing where I've learned my lesson and I'm learning to make new traditions. We have done this out of survival. I have also learned that this is just a season. It will get better, as so many other things have. Hey, the Christmas tree remained upright this year. The ornaments were constantly getting moved, touched, licked, chewed and eaten, but you can't ask for everything. Yes, looking back it was a success. Ben helped to leave out the Reindeer food,(he declined when asked to help with Santa's treat) and yes, Christmas morning he popped into the living room with a delightful squeal that made my tired soul dance. I have now learned to use the holiday to my advantage. It's a great tool to measure our growth from the previous year. We're not perfect yet, but we're certainly getting better.


  1. Everyone's journey with this disability is different. Reading your post just taught me a lot. You too, know how to look for the silver lining. I think this comes for us out of a deep love. I was amazed that Ben sat through the Christmas Eve service with you that year. Our kids are amazing and different with each moment, aren't they? And I'm so glad your tree remained upright and he was excited to open gifts. Would love to hear more from you here. (Btw, beautiful boy and beautiful cake in the picture).

  2. That's a good idea...using the holidays as the anniversary of knowing how far you've come or measuring growth. Good post. Thank you!