The winter break that never ends…

I have had a blog post like this bouncing around in my head for quite some time. I’ve gone back and forth about whether to share it or not. I would rather not paint my kiddos in a bad light or have anyone view them negatively at all. What I do want to do is raise awareness and educate. One of my reasons for starting a blog was to try to present a picture of what our real life is like. Not the “everyone smiling on the Christmas card life,” but what it’s like for us in the day-to-day. So with that in mind, here are my thoughts on winter break…

On paper, the two weeks of winter break should be some of my favorite days of the year. What’s not to love? These days could be filled with time off work and school, parties, lazy days to sleep in, days and nights filled with board games and movies, celebrating Christmas, and gathering with family and friends. We could be going to see spectacular Christmas light displays, eating delicious meals, consuming far too much dessert, and even catching up on some of those projects around the house I’ve been neglecting for weeks and months. I say “could be” because that list above is a fantasy. Sure, we still do some of those things, but as I sit here now toward the end of winter break, I’m beyond exhausted, and it’s not from all the “fun” that we’ve been having as a family. You see, when trauma, anxiety, autism, ADHD, and special needs all collide with winter break, it’s not a break at all. It feels more like running a full marathon, uphill, in snow gear, while it’s 100 degrees, in the sand, barefoot, and you are dragging a mule along with you. Oh, and that mule is kicking you over and over again.

A little background info now might be helpful. My girls live by their schedules. In their minds, a perfect day would be doing the exact same thing they did the day before. It would be eating the same food and wearing the same clothes. The weather would always be the same. The noise level around them would never change. They would watch the same YouTube video at the same time each day. Sure, they could learn some new things along the way, but each day needs to look basically identical to the others. So during a “normal week,” our Mondays through Fridays are bearable. The girls get up, eat breakfast, go to school, come home, get a bath, eat dinner, and go to bed. Rinse and repeat. Their routine is set. The weekends, however, are extremely hard. They crave the routine they’ve had for five days, but it’s changed for them on Saturday and then once again on Sunday. It’s a sweet relief for us all when Monday morning finally rolls around.

Enter winter break. Two full weeks of “weekend days.” No single day is like the others. Each day is filled with a new activity, a church service, a family party, and all the other holiday festivities and events. Still, other days are just days spent around the house with no set schedule. And while all of these things in themselves are good, the totality of them all together sends our world into a tailspin. When the girls’ trauma brains crave safety and routine, the ever-changing environment sends their anxiety levels through the roof. And when you struggle with words and communication, the natural reaction is just to cry and melt down or react with maladaptive behaviors. Over and over again.

Winter break brings next level meltdowns. This is two weeks of incessant hitting, kicking, hair-pulling, pushing, and scratching. It’s always having to be on high alert with your guard up because you know a black eye from being head-butted by your child is just around the corner. During these two weeks, one child has thrown more food at us than she has consumed. To add to the holes in the wall, cracks in our cabinets have been discovered from being kicked. New Christmas presents have already been destroyed less than 48 hours after receiving them.

I’m sure some of this doesn’t make sense because of course, all kids (and adults) get a little grumpy when they are out of their routine. Honestly, L and I have read so many books and articles on trauma, autism, anxiety, ADHD, and special needs, and it still doesn’t make sense most days. We know what the experts say, but in the real world, when food is being thrown for the five hundredth time, or you are being kicked in the shins for the one hundredth time today, you can’t help but throw your hands up and want to quit. We just try to get up each day and place one foot in front of the other, doing the best we can, and trusting that Jesus will catch us when we fall and fail. And boy do I fail. I have melted down, I think, just as much as my girls have. Two nights ago, I was thankful L needed me to go out to pick up some things from Target while she put the girls to sleep. I went out to the car and drove out of our neighborhood just screaming at the top of my lungs in frustration. I was past my breaking point.

For the past month or so, as I’ve been trying to process the difficulty we encounter in our lives, I keep getting brought back to the Lord’s prayer. In it, Jesus prays the familiar words, ”give us this day our daily bread.” I can’t help but notice the word daily. He doesn’t ask for anything more than what is needed for that day. He is confident that the Father will give Him just what is needed for that day. We are promised the same. We might not be eating a massive “feast” every day, but we are promised that He will uphold us until we crash into our bed that evening. And even then, while we sleep, He’s caring for us too. I’m convinced, now more than ever, that the only way we will survive winter break (or any day for that matter), is only because of the daily bread we receive from God.

With all of the above in mind, I’ve come up with a few things that we wish others knew about and how they can best help us during the holidays and throughout the year:

1. Please invite us to your party or event. I realize I’ve just written that these things are tough, but we already struggle with feeling left out and isolated regularly. Just being thought of makes us feel not so alone.
2. Don’t be offended or surprised if we can’t come. Just like everyone else, we only have so many hours, and typically our default answer has to be no. It’s always a tough decision not to go, but one event can trigger behaviors and meltdowns for multiple days after.
3. Don’t be surprised when we show up late. Getting out of the house takes a massive effort on everyone’s part. From meltdowns to multiple outfit changes to accommodate sensory needs, there always seems to be something that prevents us from leaving on time.
4. Understand if we have to leave early. Two hours is about our max at anything. Occasionally, we might only make it an hour. Know it’s nothing personal.
5. If possible, have a quiet space that we can disappear to. Autism, anxiety, ADHD, and trauma can make the brain very sensitive to noise. It’s always nice to have a room or corner we can escape to just to regroup and let our brains calm down.
6. Understand we are on pins and needles worried about what messes will be made, how much food will be thrown, and what we will break and need to clean up while in your home. When it happens, we will apologize profusely and be mortified. We know you say it’s OK, and you don’t care. But we do. Thank you for being gracious.
7. Check up on us during the week throughout the year. You have no idea how much a random text of encouragement or quick phone call means on a random Thursday afternoon when we are struggling with the heaviness of our situation.
8. Don’t judge us when it looks like we don’t “discipline” our child. You’ve read the parenting books, and so have we. When you step into the world of parenting kids from trauma, you have to throw those books out the window. Those rules don’t apply anymore. I know you think it can’t be that much different. You are wrong. Trauma fundamentally changes the brain, and it can take years upon years to rewire and heal it. I promise we (and our kids) are doing the best we can even if you don’t see it.
9. Help us celebrate our kids’ wins and accomplishments. It’s easy to get stuck head down in the day-to-day and not realize how much progress our girls have made. It’s always great to hear someone comment on how well they are communicating now or an achievement that they have accomplished in class.
10. Please understand that I know this list is long, and there is no way any one person can do all of these things. Know that just taking the time out of your day to read through this means so much to my family and me.

Hopefully, this sheds a little light on some of the craziness the families you know who are affected by trauma, anxiety, and special needs face during the holidays. Every single human being on this planet has worth and value. Some just take a little more work to get to know and understand. But if we all dig just a little deeper, and focus a little less on ourselves and a little more on those who are “different,” our lives will be so much richer.