A few years ago our family attended a chili cook off and trunk-or-treat at our church. It was a week before Halloween and we all looked forward to the tradition of trick-or-treating around the parking lot and taking in the elaborately decorated trunks. This tradition was gradually becoming more complicated, however, as John became more interested in the busy road that wrapped around the front of our church building. We had survived this year, though, or at least we thought we had. After collecting the kids, I put John in the back of the car and left him with the family to run inside the church to grab my crock pot. I chatted with a friend for a few minutes in the church kitchen before returning to the parking lot. What I saw as I opened the back door of the church was total chaos. Adults and children were running in every direction with panic stricken faces. A friend sprinted past me and screamed, “John is missing!”
My guess is that many parents reading this have experienced something similar with their own children. It happens all the time. A child wanders off at a public place like an amusement park or a mall to the horror of his or her parent. It’s terrifying to lose a child in any situation and completely natural to jump to “worse case scenario” immediately. At the trunk-or-treat though, we really had a lot of things going against us. John doesn’t talk, he wants to run away and doesn’t stop or look back, it was dark and there were no lights in the parking lot, and he doesn’t understand danger. Still, we had a whole crowd of helpful people looking for him. He was eventually spotted running down the middle of the busy road in front of the church. Luckily his bright yellow shirt (Charlie Brown costume) attracted the attention of my friend who was packing up her car. Pure inspiration is all I can credit for choosing that costume instead of his often reused black skeleton sweatsuit.
We pulled out of the church parking lot that night in shock. I remember watching the other cars leaving the event and wondering what it must feel like to go somewhere with your kids and leave feeling calm and content. My shock turned into a minor case of PTSD, as I couldn’t get out of bed the next day and cried off and on replaying the nightmare of what could have been. Danny and I missed our favorite couples Halloween party that night because I couldn’t stop crying long enough to figure out our costumes. Was this a typical Halloween weekend for our family? Yes and no. It’s usually not this scary. But then, we resort to avoidance by staying home or missing out on a lot.
With Halloween safely behind us, and Thanksgiving and Christmas just around the corner (or fill in the blank with whatever holiday you choose to celebrate), I thought now would be a good time to talk about celebrating holidays with extraordinary kids. It goes without saying that each of our children are unique. In our family, we have tried to find ways of connecting with John on special occasions. As a rule, John generally dislikes anything that disrupts his daily routine. Needless to say, he doesn’t stay awake on Christmas Eve listening for Santa’s reindeer. Expectations are kept very low. For Halloween this year, we took him to trick-or-treat at four houses and had him practice signing “thank you.” And at the infamous trunk-or-treat this year, we let him run around the gym stealing hot dogs off people’s plates for five minutes before calling it a night and taking him home. On Christmas morning, we feed him his typical breakfast of cheerios, but we also offer our traditional Christmas breakfast of homemade doughnuts if he decides he’s feeling adventurous. He typically has just one big gift under the tree — unwrapped — that he can immediately play with. Birthdays include cake and one gift like a new swing or indestructible toy (which is much harder to find than one might think).
I will admit that there is a learning curve to figuring out what works for you and your child. As illustrated by my story above, some traditions are, simply put, dangerous for a child with special needs. I’ve had to mourn the loss of traditions that I thought I could never let go of. Surprisingly though, I’ve realized that the new traditions we have created are just as fun and create family bonding as well. We’ve also learned not to stress about John’s participation when our other kids need our time and attention. Babysitters (if you can find the right one for your child) are invaluable over the holidays. But being homebound for much of the holiday season is something we’ve learned to embrace for the most part. There are moments of loneliness, boredom and frustration, but we do make memories and have a good time together.
To my fellow parents raising extraordinary kids, my advice for surviving and enjoying the holidays includes lowering expectations, creating new traditions that make sense for your family, staying off social media (comparison is the thief of joy), calling a babysitter if one is available, and saying “no” to the party/event that just isn’t going to work for you. We’re still learning and trying to figure this all out as well, and we would love your feedback on what you have found is helpful for your family. The most valuable feedback we could use this month are your ideas on how to get your child to hold still for a Christmas photo. Pictures below are examples of how desperate we are.
To anyone reading this and wondering how to help special needs parents survive and enjoy the holidays . . . you can help! Check in with them, even if you’re out of town. Special needs parents often feel isolated during the holidays while many of their friends and family are on vacation. Offer to babysit. Even if it’s just for an hour, it’s a much needed break. Offer to grab take-out and bring it over. Sometimes dinner invitations are just too stressful for families with special needs kids and they feel more comfortable on their home turf. But they still need connection. Grab the other children in the home and take them to a movie or out for ice cream. The list is endless. It’s the thought that counts here! It’s also important to remember that many special needs parents are going through their own sort of grieving process over the holidays — grieving the loss of certain expectations and traditions. Many are feeling sadness and anxiety at a time when they feel they should be relaxing and feeling happy.
My wishes for you for the upcoming holiday season are many. May your Thanksgiving dinner be enjoyed before it’s cold. May your Christmas picture session be as enjoyable as is painfully possible. May you keep your gingerbread houses on top of the refrigerator so that your child doesn’t destroy them (unless he/she can climb). May you discover the joy of staying in the car to see Christmas lights displays with your child safely buckled in. If you decide to pull out your favorite fragile tree ornaments, may you put them at the top of your tree. Most of all though, I wish you health, safety, and joy.