Thursday, November 27, 2014

Autism and the Holidays: Something to Remember

We've visited my parents' house several times lately, and I've wondered how bringing a 10-month-old who's pretty mobile to a place with not many baby toys can actually seem relaxing.

I couldn't put my finger on it at first. I still spent time following after her and taking inappropriate items out of her mouth. I still kept having to take her away from the kitty litter box and the open dishwasher.

Then I remembered Ethan.

Let me try to articulate this. With a typical child, you bring him somewhere and of course need to keep an eye out for him while he's a baby and toddler. But once he reaches a certain age, usually around 2 or 3, his curiosity and desire to either play or do what other kids are doing means you start to be able to let him "roam" a bit. Parents then start have a chance to sit back, take a breath, and enjoy hanging out with the "grown-ups" while their child plays independently with other kids or toys.

Autism parents rarely get this kind of breather.

I'll share Ethan's example, although it's not a great one, because he knows how to get along much better at these types of events now. There are some parents still having to keep a tight reign on their "child" with autism who is 40.

Ethan didn't require extra supervision because he was an out-of-control, hyperactive child who would trash people's houses. He didn't throw tantrums. He just didn't like a change in routine, and he didn't care as much about interacting with people. That meant: Wherever everyone else was gathered, he wanted to be doing something else. And he needed to spend time with some kind of object that brought him comfort from the stress of a changed routine. These were usually unconventional items or activities such as sliding a screen door back and forth over and over, opening and shutting doors nonstop, flipping light switches, or looking for the hose outside to trace the path again and again.

When we are with relatives these days and all of the little cousins are around, I see the way they flock around Chloe. I realize how much time kids spend on interaction that we don't even notice. I honestly never knew how much time young children take just looking at each other, exchanging subtle gazes and other gestures. At gatherings and especially during the holidays, adults cook and gab and catch up on each other's lives; meanwhile a gaggle of kids usually forms somewhere, led by the older ones, with the little ones trailing along wanting to do everything the big kids do...

But if your child isn't interested in interacting -- that child, who is not trying to be bad or irritating or rude to the others, often goes off and does something else, often something considered "inappropriate."

I wish others knew, or would remember, how many parents of kids with autism spend a good deal of the time during holiday get-togethers in a quiet room apart from everyone a bathroom where their child wants to play with the basement...outside. These parents can hear the murmurs of laughter in the distance. They would love to be taking part in conversation. Maybe they'd love to be sitting in a comfy chair able to focus just on chatting rather than always wondering what they're child is doing or how to keep him calm.

I wish others would keep in mind that the first thing most parents of autistic kids think when they hear holiday gathering is stress. They know they will spend a good deal of the time trying to keep their child comfortable with a change in routine and scenery. They won't get much "downtime." They will possibly miss special moments. They will see the other kids playing together and watch the way their parents are able to let them go and play without even thinking about it, and their hearts will hurt a little. They will return home most likely more exhausted than when they got there. They will be counting down the days until the end of the weekend or holiday break when their child can get back to their schedule.

If I could implore you, please, remember these parents as the holidays approach. If you see one at a get-together, the best thing you can do is leave the festivities for a few moments and seek them out. Go to where they are and spend some time chatting, or connecting with and helping with the child, if that's possible. Involve the parent in adult conversation. Let them know you really, truly care and want them to be a part.

And if you ARE that parent, please know: you are not forgotten. I am thinking for you and praying for you, during this wonderful, difficult time of year.

1 comment:

Deborah said...

Good luck with this new holiday season and thanks for advocating for parents!!!