Our One Good Hour on Christmas

I never would have guessed that unwrapping presents could upset someone so much.

Christmas this year was difficult for us, and for the most part to be totally honest-- not much fun. I wonder how many other people out there could have written that exact same line but didn't. It's hard to kind of come clean about the holiday, even if it sucks it's something better left unsaid usually. I made a ton of mistakes going into the holiday this year, and spent the week leading up to the New Year pouring over the plans like some old battle map that went terribly wrong. Scratching my head surveying the carnage. Some of it was my fault, some of it just couldn't be helped, and some of it was not getting the chance to be around people we love because their priorities have shifted to new things, and that never feels good to be replaced. So we decided that we would just focus on our own little family unit. It would be easier to manage the chaos of the holiday if it was just us. I was feeling pretty confident we would have that dream magical morning, and spend the rest of the day playing and relaxing and watching the children smile and skip, while Cole and I high-fived one another and congratulated ourselves for being the greatest parents alive. I am such a Griswald sometimes.

When it comes to a BIG DAY like Christmas and The Littlest Buddy even the most careful and thoughtful planning could end up working against you. One of the things about his genetic disorder (SMS) is that his entire life is built around his own specific set of expectations. I have written about it before, comfort to LB is switching a light switch on and off 500 times in a row-- when he flicks it on, there is light, off, it is dark. This world makes sense to him, he knows what's coming, it's comfort.

So our Christmas plan for LB was to prepare him for the days events way in advance, in a specific order, without a ton of fuss, so that the day was the most stress free not only on him, but so that we had an environment to work within to make sure that Tessa was able to just be silly and excited and go about her day the way that she wanted to. It's hard to plan for a day where on one hand you want to fill the day full of surprises for one kid, and the other you want to keep things smooth and quiet. Tessa cannot be denied a childhood just to keep her brother calm.

The most important thing for me to do is make sure that Tessa never feels stress or tension centered around the work we do to keep LB happy and humming. I am so afraid of the day that she might resent him for taking away moments that were meant just for her. His theft of her moments happens all the time now, and to prevent that resentment from building inside of her, we have to roll with it, be careful not to make him a villain to her that sweeps in stealing her laughs and giggles with his tantrums and tears. When he does this it's hard to not respond in a way that doesn't breed resentment. We have to watch ourselves, and speak to him with compassion and not in a scolding way, at the same time we have to still be sure to correct his behavior while trying and preserve what is left of the original moment for her, and find a way to incorporate keeping him calm into her growing excitement. We refuse to teach Tessa that to celebrate and enjoy the unexpected moments of our life is to do so not in the presence of her brother. We will not teach her to remove him from the equation, because that behavior will be mirrored later in life. So it's all about incorporating his reactions into her surprises and making it all okay. Sounds like a lot of work? Well it is.

So Christmas.

Everything about the holiday is bad for LB. Let me take one example. You want to watch a Christmas movie on Christmas Eve? Ha! Well LB has never seen this movie, so it becomes a stress and a meltdown. So just to be able to play something like the Grinch or Rudolph means that we bought the films in early Nov, and I started playing them two or three times a week when I could sneak them into a day. The first ten times it's like someone is scratching nails across a chalkboard around him. He runs out of the room, he bites himself, he cries, he gets mad it isn't something that he knows. Who are these people, and what are these things, and why does that nose sound like this?!! If you stick with it, soon after the tenth time, he starts to point at the characters and say their names like friends, and his body language changes, all the sudden the predictability of a moment becomes a comfort and he is excited to see the film go in. So that way when you want to pop in ol' Gricnchy on Christmas Eve for the kids to watch, it doesn't become a moment of disaster and tears. Of course by this time, nobody else has any real interest in seeing it.

On our Christmas day, I could list all of the things that went wrong, and how hard it was to keep Tessa excited and thrilled while we tried to keep The Littlest Buddy from having an epic meltdown. I made all kinds of little mistakes in the moment, but the new one this year that surprised us, was that for the first time ever the presents being wrapped were too much to handle. In the past preparing him for a box wrapped in paper with a surprise inside was enough, he could handle it. He expected the surprise. This year, he couldn't handle the not knowing, he would unwrap something, and it would upset him, the more gifts the more the anger grew, half way through he was throwing boxes on the ground, and running in and out of the room shouting, tears streaming down his face, snot bubbles bursting, he was on red faced fire. He hated this. And for the first time in her little life, Tessa stopped what she was doing, her smile faded from her face, she looked concerned and confused, and she said: "what's wrong with LB?" Except she used his real name of course :)

it wad the first time that she asked us about his behavior. You could just see the confusion unfolding, she was jumping up and down excited and thrilled, and her brother was coming apart at the seams. She was baffled.

It was a light year in terms of gifts, we would stop in between each gift being unwrapped and actually take the toy out of the box, set it up, and play with it for a few minutes, so it wasn't just a frenzy. Nothing worked. There was a point when he stood over us, with his new Toy Story comforter held up over his head and you could see him considering hurling it at us. Cole, looked him down... "don't you do it." and the little fires of rage burning behind his eyes were growing, and she just scooped him up, curled him into a little ball, placed him in her lap, his fingers went into his mouth, she sang him some familiar songs, and rocked him a little, and there he remained the rest of the morning while presents were unwrapped. He stayed in a far away little trance away from Christmas until it was over, and Tessa kept having a blast excited over her surprises, but for the first time ever, with a close eye of concern on her brother.

We felt so defeated sitting there in the ripped open packages. Already planning for next year. "Well next year we won't wrap anything for him. Just put a bow on it with his name, and place it under the tree." and then someone realizes, "well then he will have a tantrum because he feels left out, and doesn't get to unwrap anything." In most cases with kids with SMS giving them a task or a job where they are being helpful makes them feel better. The more real the responsibility the greater the comfort. We left LB stranded this year as this participant in a holiday that he didn't ask to be a part of. We thought he could handle it if it was just us. The second you let yourself get tricked into thinking that the perfect gift, or a great tasting treat, is more powerful than the SMS, you are screwed. It always feels like crap to realize that there are still lingering bits of denial when it comes to his SMS. Cole and I both are guilty of it sometimes. Sometimes we trick ourselves into thinking he is really going to love something, when the whole time, it's just us wishing and hoping that he will.

Tessa had fun on Christmas, she played she laughed, she tried to make her brother play with her, she wants to include him. This is such a great victory. In the end once the chaos of the morning was over, we got to see Tessa and her brother play and laugh for an hour in his room before the next round of chaos was introduced, because we had a breakfast to attend. But for that one hour, it was awesome. And if you have a special needs child in your life, you cling to those hours, and they build up, and they are so essential, you lean on them during the hard times, and you lay in bed and spend all your energy speaking about that one awesome hour. It's so easy to know the job you're doing as a parent when you can see smiles on faces, and for us hearing Tessa and LB play together is easily one of the greatest joys on earth for us. It is such a relief any time we hear it. So this year we have that one hour to remember. Next year we will go for two.

I think one of the hardest things I have noticed about raising a kid with special needs is how often other people look at you and think, "I could do it better." People meet LB and he is sweet and charming and funny, and they think "well these two must be idiots if they can't keep him happy." Nobody knows this kid better than Cole does. Nobody. And so when I see anyone question her or speak to her in any smug shitty way about how they would do it different... I feel my fists ball up and I imagine caving teeth in. I guess I just wanted to say, that I know it's human nature to want to offer advice and perspective to people when they witness disorder or chaos, but maybe the next time you see someone right smack in the middle of that kind of chaos with their kid, and you feel like you have to say something-- maybe just let them know that they're doing a great job in some way and given them some support, some fuel to keep the endurance up. Understanding is the best gift you can get sometimes.

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