Overall the holidays went well. There were some "moments" at the beginning, especially before Christmas, when Stephen was tough to take. At least for me. He wanted to "o-pen" the presents under the tree - and while we were thrilled that he seemed to be more into the whole Christmas thing, it got a bit old trying to explain to him that he would be able to open them...later. I did my best to keep him occupied, and the days slipped by. We went to a family Christmas gathering, one of the same ones I believe I mentioned last year, and Stephen did great. I got to talk to one of my cousins who has a daughter with autism (or PDD), and that was pretty cathartic for me. David ended up taking Stephen for a walk - and as I look back, it was a pretty touching sight to see them, hand in hand, walking on the sidewalks in the small town where I grew up.
But again, I am very aware of my own gray clouds that hung over everything, and made everything feel dark. In time I may feel comfortable going into all that, but I've determined that this is going to be an exercise in finding the positive things and focusing on them.
Christmas morning was a lot of fun - both boys were thrilled with what Santa brought. Kerry got his beloved Nintendo DS and more Legos (yay) and Stephen got a tiny portable DVD player plus trains and books. For years now I've been avoiding DVD displays in stores because if Stephen ever got his hands on one, you needed a crowbar to get it away from him. And since we lock up his VCR to keep him from fast-forwarding his tapes (big-time stimming and wear-and-tear on tapes and machine), we didn't think investing in new technology was worthwhile. But, once we began to see the way he navigates his way around the internet, watching and pausing and fast-forwarding video clips to his heart's content, we realized that maybe that battle wasn't so important after all. Plus, in case you haven't noticed, they don't MAKE videotapes anymore. So any new Thomas stuff that comes out is only on DVD. I hated depriving the little guy of his beloved Thomas. After some marathon sessions the first two days after Christmas (which of course had me doing some serious second-guessing), Stephen has settled into an acceptable routine with his "bee-bee-dee." He sits at the dining room table, watches a bit, fiddles with the buttons a bit, and even plays some of the DVD games, and then he goes on to something else.
And folks, the absolute JOY that little machine has given him is worth a million dollars. He pops his little headphones on, gets a disc loaded, and the smiles are fairly leaping off his face. It's worth reminding myself how that kind of joy - pure, childlike abandon - can lift you up when things seem dark.
We went on another family outing - my parents included - to the local hands-on science museum. It was Stephen's first trip there in years. They had a model train exhibit that we thought he might enjoy, and he certainly did. Exhibit A:
But what amazed us was the fortitude he showed in dealing with LOTS of sensory input...noises, lights, people, motion. But he didn't just put up with this stuff - he LOVED it. He even ate in the cafeteria there - a huge accomplishment since they don't serve McDonalds burgers and fries. He laughed and danced and interacted, and he even tried to jump into one of the big, open-top aquariums. We had to laugh at his persistence...he'd climb up, stretch out his arms, and then as quick as a wink he'd dunk both hands into the water and splash his face. I present Exhibit B:
You'll notice he's wearing a different shirt - I bought him a short-sleeved T-shirt because it was HOT in the museum. So he promptly soaked himself to aid in the cooling process. :-)
We got some looks, sure. But I'm THIS close to getting used to those. When I look at him, I see the years of hard work, the effort he makes, the happiness he carries with him nearly constantly...I remember that we have no idea what life is like inside his little noggin, and it hits me that it's truly amazing how well he does from day to day. There are ALWAYS rough spots, and when my head is scattered and I'm overwhelmed, autism seems to score a few points against me. But as David reminded me recently, Stephen has a real personality, and a sweetness that most "normal" children would be hard-pressed to display. I am proud of both of my children, but right now I'm proud of Stephen in a special way. He exists in a world that no doubt makes little sense to him at times, and he continues to epitomize the gleeful joy of childhood that so many of us grow out of, sadly.
Happy New Year to you all, and I leave you with just a bit of that joy that Stephen's teacher managed to capture on film. I hope it brightens your day as it does mine:
1 comment:
You can call me and vent ANYTIME!!!!
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