Now, if you have read any earlier posts, you know in our home we live with a number of medical diagnoses with numerous acronyms, i.e. an alphabet soup. So, when I use that term, it isn’t derogatory but gives you an idea of the jumbled mixture we have to navigate.
Every family I have ever talked to or read about who have children on the spectrum, with ADHD/ADD, anxiety, sensory processing, mood disorders, and any number of other things that make social events a delicate dance fraught with minefields we don’t even see. As such, holidays can be some of the worse times for these families. Holidays are days full of unstructured days looming before us where the schedule changes frequently and the number of people we are asked to interact with can grow exponentially and involve many we don’t know well. These kinds of things can be very stressful to the child or adult dealing with any social communication problem. This year, we had the kind of rough Christmas day we haven’t had since early in our adventure as parents to exceptional kids. And while I didn’t really learn these lessons fresh this year, it certainly reminded me that I must stay vigilant to all things that can make or break a day.
Lesson 1: Be aware of changes the day before you are scheduled to be somewhere. This year, number one son did not sleep well, he probably only got a couple of hours of sleep. He was excited for Christmas, but he also suffers with insomnia and seems to function fine with little rest. This can be common with kids on the spectrum, especially. But, no matter how well your child can function with little sleep, holidays with set expectations can ruin that. If I had kept the idea that little sleep with high expectations can be difficult, I could have built-in more ways to help him reset for the family get together and the sit down dinner. I also would have been more understanding and accepting in the moment.
Lesson 2: Stay alert to warning signs and phrases from your child. In our world, avoidance of tasks is normal. Yet, Christmas day saw a rise in avoidance on a day that is typically filled with interaction. His need for reassurance through tactile input (affectionate touch) was high even without a corresponding meltdown and activities that normally interest him brought little show of feeling. By just being annoyed at the constant avoidance and need to be touched while we are busy with other things, I missed realizing that he was in an emotional and mental crisis where he needed help. I didn’t help successfully because I was stuck in my own idea of the day.
Lesson 3: Which leads us here. Don’t be married to your idea of the ideal day. When you live with people who work twice as hard as most just to understand the social cues and become uncomfortable and often inconsolable when away from home, you have to become adept at making plans knowing that they might be scrapped or totally overhauled because someone is having a meltdown or is just unable to function well in public. Sometimes when the kids are doing well, I forget that I must be flexible in the extreme. I did that this year. Even as I watched him meltdown and lash out, I didn’t immediately recognize that he needed a bit of extra help. Even as I talked to him about having dinner with the family I was seething a bit on the inside at the idea that he was refusing to come to the table. Something he is always required to do and had done many times in the past, was almost impossible this day.
I had become complacent you see, I expected things to go well because they had been going well for a long time. Instead of taking each day as they come, I had plans I didn’t want to change, I wanted some commercial idea of a perfect day and I didn’t stop till it was almost too late. It was evening before I recognized that what I was seeing was his inability to control himself and crying for help in order to do that. He didn’t want to make everyone else uncomfortable or delay dinner or run away when he should stay. He needed help in grounding himself and coming up with ways and space and time to be comfortable with what was expected of him. It didn’t matter that he had done it countless times before, what mattered was how he was feeling at that time, on that day. More than anything, kids and adults who struggle with any or all of the aforementioned disorders need time. Time to think, time to process, time to be. We have to be willing to give that to them recognizing that even if we don’t have the same struggle we all have had a situation in which more time helps greatly. We can’t be quick to give it to those we deem neurotypical and not to those we deem neurodiverse.