For days after Halloween, I read social media posts from parents of kids with disabilities who were bummed that their children weren't into trick-or-treating or Halloween celebrations, period. Some children wailed or fussed and refused to leave their homes.
I knew exactly how those parents felt. Max used to hate Halloween, and it pained me that he was missing out on all the fun. Eventually he grew out of a lot of his sensory issues and decided he did want to trick or treat and go to our town's parade. If he hadn't, chances are I'd still be mourning the lack of Halloween in his life.
It is really, really hard not to feel bad—or even let down—when your child doesn't enjoy stuff many other kids do. I mean, most of us grew up loving amusement parks, parades, fairs, candy, going to movies, jumping in bounce houses at parties and other typical fun kid things. And then, you have a child with disabilities who's terrified of amusement parks, movie theaters, fairs and parades; who can't chew candy or jump in bounce houses; and who's scared of Halloween costumes. And your heart breaks for them. Maybe you keep trying in the hopes that your child will get into the activity/food/event/whatever, a unique form of family torture. It's human nature, parental instinct and perhaps a pinch of denial.
Halloween is supposed to be the epitome of kid fun—even if the reality is very different for many children with disabilities. One mom I know who has a child with autism told me about a Halloween parade in her son's school (which is for kids with autism) that went on forever; inevitably, one kid totally lost it as he made his way across the auditorium, screaming and nearly kicking people.
One mom I know who has a child with special needs tried something new this year. For her husband, Halloween is almost a holy day—he likes to build up to it by watching scary movies throughout the month—and he's been disappointed about not being able to trick-or-treat with their son, who's scared of masks. And so, this year they planned to hang on their stoop and hand out candy. A friend came up with the idea of a point system: Whenever someone with a scary mask passed by and her son didn't freak out, he'd get a point. She was game to share the chart she came up with:
In the end, there weren't a whole lot of people with scary masks passing by, but her son dealt well with them and both she and her husband had a great time. At bedtime, her son said he was sad Halloween was over.
Raising a child with special needs is a lot about letting go of the shoulds—how children should develop, look, act, behave, move, walk, talk, communicate, learn, have a good time. As with everything, we just need to realize that our kids can do things, in their own way. Or they find alterna-ways. Or they don't do them at all and so be it.
As parents of children with disabilities, it's all about making peace with reality (isn't that always the case?!) and accepting that there's nothing scary about children who have their own concepts of a good time.
Rethinking what's fun is still something I have to do for myself- reassuring myself it's fine I don't like going to parties or movie theatres or restaurants or haunted houses even if that is what all my friends are doing. My aversions to these things are partially personal preference and partially due to hearing loss, gluten intolerance and anxiety.ReplyDelete
I shared a similar thought to this on my instagram this weekend. Sometimes we have to just let go of one dream in order for other dreams to come to fruition. Raising a special needs child is really all about give and take and finding a balance that can bring everyone joy.ReplyDelete
Mine is reading. I'm an avid reader, it's my only vice, really. Kids see me read all.the.time. 3am and I'm still trying to finish just one more chapter...ReplyDelete
And 3 for 3 of my kids are not readers. All for different reasons - Ms.22 with down syndrome who can read well functionally, but will never be a reader for pleasure. Mr.19 with ADHD but otherwise typical who has never read for pleasure and probably never will and Ms.12 who is otherwise typical but finds the mechanics of reading hard despite an excellent vocabulary and high academic scores.
But yes, I have learned to let go. I read to Ms.12 instead which is nice time for both of us, but not the same as dropping down the rabbit hole of a really good book.