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The holidays are a time when there are lots of unexpected changes to everyday routine and structure. Although these changes are exciting and fun, they can cause lots of uneasiness for a child with special needs.
Most individuals with special needs are able to function best in the world when they have an understanding of what is expected of them and what is coming next. Lack of, or change in, a routine can cause great upset to these individuals because they may become confused, overwhelmed, and in many cases anxious. This can cause meltdowns and other maladaptive behaviors. So it’s no wonder the holidays can be a source of stress for some families with special needs children.
When speaking with other special needs families about the holidays, there is one common factor that seems to be a prevalent problem: bedtimes, and how the holidays upset these delicate routines.
For many special needs children bedtime routines are especially hard to establish.
Many times, any upset to the routine will make a night go from bliss to utter insanity. Other times, the child may seem to be adjusting well. But don’t be deceived by this sorcery; it’s the next day (or even the day after that) when it all hits the fan.
The child is exhausted, overwhelmed, and doesn’t know how to process their current state. It can lead to hours of meltdowns, aggressive behaviors, dents in the drywall, and the house turning into a complete mess.
For some families, the child suffers from insomnia. You haven’t lived until you’ve woken up at 3am to hear Barney the Purple Dinosaur blaring from your TV, only to find your special needs kid up and ready to start their day. This gives a whole new meaning to the phrase "the early bird gets the worm".
These families are just plain exhausted and don’t want to come to your party that starts at 7 o’clock in the evening.
You may have seen it happen: This family walks in to the party looking like a total train wreck, trying not to completely lose their shit, while owning their despicable appearance, just to have Great Aunt Muriel feel the need to let them know how terrible they look.
Then the host of the party makes their way over and says how they’re delighted the family could make it despite the lack of sleep.
Typically, most parents with young children (special needs or not) have similar issues with their babies waking in the middle of the night and needing early bedtimes. Many times these families only come to Holiday celebrations briefly so they can adhere to their child’s bedtime routine. Or they stay at the party past the baby's bedtime and endure the inevitable crabbiness and utter despair that is their next day. For them this is a stage or phase that will be short lived. But for special needs families these bedtime routine issues can be an issue for the entire lifespan of their child.
Inevitably cousin Pamela will try to give advice to these families. You see, Pamela has been a parent for all of 4 weeks, her baby sleeps through the night, and she believes herself to be actual modern day motherly miracle worker.
Trust me, the family has read all the books and are working with specialists. Thank you for your concern, but it’s at this moment in the evening they wish they were hard of hearing like Grandpa Jerry and could turn off their hearing aids.
So how can you actually help? Try having your celebration at a time that works better for these families. Try having the party earlier in the day. If this conflicts with work schedules, celebrate on a different day that allows for an accommodating start time.
For instance, we have our Christmas Eve celebration starting at 1pm and it ends around 8pm to accommodate our special needs son’s bedtime schedule. (And guess what? It worked out even better for all the kids and cousins in the family.) This was not a tradition that came easily to my family. At first there was much resistance and some growing pains. It’s hard to fault the family, as in our parents' generation they had no exposure to children like our son, because unfortunately these kids were almost always institutionalized. So this is their first encounter with a child like this, and extended families don’t know what to make of it all.
They very much love and accept our son, but actually accommodating him and what that entails can be a bit foreign to them. It’s not out of lack of love, but a lack of realizing his needs and what that entails. My husband and I spent time explaining the reasons why this change was important to our family.
How I hoped our conversations went:
How they really went:
Emotions ran high on both sides. After all I was talking about my kid and I got emotional. At first you would have thought I just dropped an atomic bomb on my family, but by next year’s Christmas celebration they had finally come around. Despite the headache it produced for us, in the end it was all worth it. We now have a great new tradition that everyone has grown to enjoy.
Speaking with the special needs family in your life and asking what would be best when it comes to holiday celebrations will go a long way in creating a lasting relationship. The fact you are trying accommodate their child will mean the world to them.
Let’s Recap! Changing the time of your party might be helpful to a family with a special needs child. Also, ask the family what works best for them, respect schedules, be sensitive to their possible sleep deprivation. And lastly, allow them the space, free of judgement, to talk about the needed changes.
Have a Happy Holiday
~ H-Bomb Ties
