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The space between (Christmas and New Years) December 27, 2009

Posted by caizooka in autism parenting.
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Christmas was good in our house. My parents and my sister came over and the kids, and adults, all got to just relax. The joy of Christmas for me is not in the day of Christmas itself. I’m trying to separate the joy of Christmas, the meaning of Christmas, and the American gift giving, santa-clad holiday. All wonderful on many, many levels. But, to combine them into one day doesn’t do the others justice. They need to be separated into three days. I always cry at the end of Christmas Day. It seems like my life (and most peoples) for the past month+ has been defined by what I’m going to squeeze in to get what for whom. Life gets whirling out of control. To plan meals for the holidays, buying everything ahead of time, is just bonus pressure. Anticipating visiting places. What do we need to pack? Who is carrying what? Attending to everyone’s every need of the moment. Anticipating visitors. What do they need? Do we have bed sheets that actually fit that bed? Will it be okay? Do they have dietary restrictions? When the pace is nonstop like that you get used to it. After the holiday is over is when I fall apart. To be going at such a pace that stops so abruptly is jarring. On the other side of the tears it is refreshing, too. Glad to be able to find time to do something different again. I always come out of Christmas thinking about what I’m not going to do next year to make it easier. It never ends up that way. It just seems to be more complex, yet also so much more meaningful each year as well. Goal for next year: to maintain perspective.

J got the flu a few days before the holiday. It was yucky and so sad to see him so depleted for 2 full days. Then O started his screaming about his stomach soon after. That finally ended up to a trip to the ER yesterday. The paper that they brought home said, ‘diagnosis: abdominal pain’. Really?!!! NSS (if you know what that stands for then you get it. If not, email me;)) I worry about that little guy with this whole GI distress thing. GI abnormalities and inexplicable pain are quite common in autistic children. A friend of mine pointed out to me that his symptoms sound like IBS. I hadn’t thought of that before but it sounds similar. We are supposed to complete this series of tests of stool samples, to test for intestinal flora, but I haven’t been able to get myself to do it yet. It involves inducing pain, by giving him a laxative, to give different kinds of samples over a 24 hour period. I know that it would be better in the long run to have such information, but I think that we have to further evaluate at what risk. His initial reaction to anything right now is screaming. It is horrible on so many levels to hear him screaming.

Again, O has been spacing out a lot lately. Yes, he is getting better in so many amazing ways with his social skills therapies and numerous wonderful teachers that adore him and have so much to offer him. But, as a mom, watching your child here, but not here, is so upsetting. I feel his presence, but I don’t. I finally realized why he won’t respond to me in the car. He is always staring out the window, spacing out, in a far away land that I cannot access, no matter how hard I try. I realized that he is amused with the red lights. The brake lights of the cars ahead of us. I asked him one day, what he is looking at and for once he didn’t say, ‘see the aliens, mom!’, but he said, I’m looking at all of the red lights. They are beautiful!’ A-ha, yes, indeed, O, they are, thank you for sharing that! One more piece to the puzzle. I wonder how many pieces this puzzle is going to end up being. You don’t think about how big a puzzle you are signing up for when you have a child. 500 piece? 5000 piece? 5 million piece? Regardless, it is many, many pieces. I don’t think that we ever will see the full puzzle completed, with all of its pieces. The more that I ponder this, the more that I think that we see the full puzzle daily, but it compiles differently sometimes.

I don’t know if you are one of the lucky ones to have gotten to participate in an O related birthday event. He LOVES birthdays. He loves the candles, the song, the presents, the cake, and the sheer excitement of the event. It is euphoric to be at a birthday with O. He thinks that everyday is a birthday for someone. Some days he tells me that it is my birthday. That is always a joyous day! When everyone was asking him what he wanted for Christmas, as every adult asks every kid, he responded, ‘presents’. But the way in which he responded was so cute, his voice told you that he had no other expectations, and isn’t that what every kid wants. I don’t think that he’ll ever compare himself to any other kid. Gosh, I sure hope not. He is too original to be like everyone else!

A friend of mine gave me the Jenny McCarthy book, ‘Louder Than Words’ about her journey of her son’s autism. It is so interesting to read of others journeys along similar paths. I always learn so much about others journeys and lessons learned and am so thankful that there are others who are going thru this with me and are willing to share. I feel a deep sense of camaraderie with others on similar journeys. I do wish that it was better written or at least better edited…but the honesty with which it is written is beautiful. I am also reading a book called ‘With the Light’ which is a Japanese manga that was originally entitled ‘Hikaru to tomo ni’. It was made into a Japanese drama a few years ago. (not many people know my deep love of a good Japanese drama!). I’ve been reading the book and started to watch the drama as well. It is really, really interesting. I’m only a few episodes in (most Japanese renzoku dramas are 13 episodes long), but I so relate to the journey of this woman and her son. It’ll be interesting to see the different social nuances of a culture handling a child that doesn’t fit in, compared to raising a child in our society where you would think that they would fit in more. Hmm…a lot to ponder here.

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