Erin is the mom of three boys, one of whom has a
rare chromosomal disorder. As a parent who loves Halloween, she’s realized this
holiday is even more special than she ever imagined. I hope you’ll read this
beautiful point of view.
Halloween has always been one of my favorite holidays. We have three sons who are equally as enthusiastic about dressing up and trick or treating. Our house is fully decorated. And we love to carve pumpkins, make candy apples and shop for fun costumes.
However, despite the joy this holiday brings to our family, it also comes with a certain level of anxiety. Our youngest son, Connor, was born with a rare chromosomal disorder which resulted in a cognitive disability, motor delays and epilepsy. He is non-verbal and can only walk with the assistance of an adult -- or "Walker," his walker.
As you can imagine, the thought of trying to navigate dark, uneven sidewalks with a 3-year old child who uses a walker can be daunting. Add that to the fact that he is usually dressed in some fluffy costume and desperately trying to hold his own candy bag, it makes the "adventure" of trick or treating even more challenging.
But that doesn’t stop us from loving the holiday. In fact, when Connor was first diagnosed, we made a promise to ourselves that despite his special needs, we would treat him just like his brothers. We also vowed to give him every opportunity to participate in typical childhood activities.
So this is what we do: I decorate his walker so that it looks like part of his costume. Many parents of children with special needs create similar costumes out of their children’s wheelchairs or walkers. It is the one night of the year we actually encourage people to stare at our children’s assistive devices. In fact, I’ve been known to put pumpkin battery-operated lights around "Walker" and encourage kids to come and ask us questions. They are usually fascinated and want one for themselves. Together, "Walker" and Connor are a hit, and it makes Connor’s night even more exciting.
This year Connor is going to be "Mr. Incredible" a super hero known for his tremendous strength, and we are wrapping brightly colored lights around "Walker." As for trick-or-treating, we set out early as a family. We first visit the homes of our next door neighbors. These families are very familiar with Connor and will come down off the front stoop to meet him. This simple act of coming down the stairs, rather than having Connor struggle to climb them, is so touching. My older sons’ friends will come by and high-five Connor. Connor loves all the attention, and puffs with pride. His smile is contagious, and we can tell he feels like a local celebrity.
We continue onto other houses for as long as his energy level will allow. If we come upon a house that has stairs and the owner does not recognize that our son cannot climb them as easily, Connor’s brothers will jump in and ask if they can have a treat for their little brother. Our older sons have always assisted Connor as needed, and they do not hesitate to ask for things on his behalf. Some neighbors like to comment on the children’s costumes, and many times they will ask Connor a question without realizing he doesn’t speak. Again, our older sons will step up and answer the questions for him.
When Connor eventually tires, we will make our way home, as my husband continues to trick or treat with the older boys. Connor will then help me hand out candy to other children, which again makes him feel like a star (plus, he gets to sneak a few pieces of candy for himself!)
Our friends with children who have special needs have also modified their Halloween nights to accommodate their child’s medical issues. Some have children who are restricted to special diets (ie. Ketogenic) and they cannot eat candy, so in advance they give their neighbors toys to give to their children instead. Or those families with children who have epilepsy and cannot be around strobe lights for fear of triggering a seizure. They have asked their neighbors to turn off the strobe lights until the child in question has gone inside. And families with children who have autism and sensory concerns have learned to trick or treat in familiar environments, or practice trick or treating before the big night.
Halloween is such a special night for young children, including those with disabilities. They get to dress up as their favorite animals or characters -- and go from door to door to get candy – just like everyone else! It’s a dream come true. Perhaps I’m more aware of it now, but it seems that today there are more kids who have conditions that make every day life difficult – especially Halloween. Even peanut-sensitive kids have a totally different experience. We are very fortunate because our community has embraced our son’s needs and taken an active role in making him feel accepted.
Last week Connor took a few steps unassisted. It was a beautiful moment. Eventually, our hope is that he can leave "Walker" behind. But for now, we embrace and embellish the device that gives our special child the incredible super power of independence. (He really is "Mr. Incredible!") Halloween has become a day people don’t just stare and wonder what he has, but they come up and make him feel special in spite of it. It’s been a night of monsters, goblins, super heroes, candy overload, and happy memories.
So my advice? If you see a kid like Connor -- whether he’s decked out in a wheelchair or walker -- praise his creativity and voice, even if he doesn’t physically have one. Feeling like a typical kid is all he and his parents want for him.
Tell me, have you seen or used a great example of medical equipment used in a Halloween costume? Have you made any kinds of accommodations for children with special needs?