A few weeks ago I was featured in Parents Magazine, sharing my tips for a more inclusive Halloween. I shared a lot of tips from how to plan costumes, to how to coordinate Trick-or-Treating routes. I have more to say on this topic so in this blog, I share our family’s experience with Halloween, how I realized I needed to change my thinking, and how I created new, better traditions.
When I first became a mom, I remember being so excited to pick out Conner’s first costume. He loved the Teletubbies and I thought that would be so cute! My mom offered to make him his first costume. I thought to myself, “this was what motherhood is all about.” I couldn’t wait to go Trick-or-Treating and do “all the things” I was “supposed” to do on Halloween. Halloween was fun for us - until it wasn’t anymore. Like many other things, as parents of children with disabilities, our realities are just a bit different. Still fun, but different. Since then we’ve found ways to make Halloween and other holiday traditions work for our family - to be “uniquely ours” without societal pressure to do things that just didn’t work for us.
When Conner was about five years old, he was diagnosed with Usher syndrome, the leading cause of genetic deafblindness. So, in addition to him being born profoundly deaf, he would also gradually lose his eyesight until he was would be blind. That’s when Halloween really started to be different for us - but in hindsight, I knew before then too.
Conner had always been a bit different than his peers. He would get overstimulated easily, he didn’t like scratchy or constricted clothing, and he was particular - about most everything. If the world didn’t seem exactly right to him, a meltdown might occur. So, even at a young age, he didn’t love school holiday parties, decorating cookies, or sitting quietly doing art projects. That just wasn’t him.
When he was about four years old, right around when we were noticing Conner being deathly afraid of the dark (this is what got us to make an appointment to get his eyes checked out and how we received his Usher syndrome diagnosis), his friends started to be more into Halloween. I so desperately wanted Halloween to be great for him and I thought that the way to do that was to just suck it up - do the same expected activities and hope for the best. I had no idea how to make Halloween accessible and inclusive - nor did it ever cross my mind. I just wanted to be “like any other family”.
Conner’s retina specialist had confirmed that problems with night vision were likely because of his eye condition. I tried my best to not let the diagnosis fill all my days with worry - I tried to have hope. And, I feel like, for the most part, I accomplished this. I tried hard to appreciate every day and not dwell on all that would someday be lost - his precious eyesight. I tried not to think about what he could and couldn’t see. I tried not to compare him to other kids.
That worked until I started planning for our first Halloween after the diagnosis. One day I woke up in the middle of the night - sweaty and anxious. That’s when it hit me - Halloween as we know it isn’t fun for Conner. I had visions of the previous year where he would hold my hand with a death grip as we walked around the neighborhood Trick-or-Treating. I loved Halloween, so I did everything possible to make this the happiest experience. But it wasn’t. What ensued was a sore hand from the death grip, tears from both of us, and anxiety. Even getting him into his costume was a challenge. He fought me every step of the way - and there was no way I would ever get him to wear a costume that touched his face. The entire experience was nothing short of miserable because I was thinking of me, not him.
Also, that night when I awoke in that anxious fit, sadness washed over me. My son was going to go blind. My son was already night blind. Conner's experience was different from other kids - different than our younger son, Cole. I couldn’t think. I couldn’t focus.
Somehow I pulled myself together and, with a new fire inside me, I started to think about Halloween differently. I didn’t have to give up on my desires for Halloween to be fun for my kids, but I did have to rethink my views on what would constitute “the perfect holiday” (what the heck - perfect isn’t even possible).
That’s when we started creating new family traditions for Halloween. That’s when I started really thinking about what Conner needed in order to make it fun for him, and let go of what Halloween was “supposed to” look like. I stopped caring about whether he wore the cutest costume (he was cute anyway!) I stopped caring if he didn’t want to wear his costume to school like his peers - I bought him a pumpkin graphic tee shirt instead for him to wear. I stopped having the expectations that we would spend all night Trick-or-Treating like everyone else. Instead, ahead of time, we mapped out a few accessible homes with kind neighbors and were ok with that. We bought extra candy and filled his Trick-or-Treat bag with his favorite candy - not the Almond Joys and other candy he hated. We let him hand out candy to other kids and found he enjoyed that even more than Trick-or-Treating himself. And, we stopped worrying about all the art projects, cookie decorating, and simply all the “expectations” because it just wasn’t fun. And, you know what, it was ok! It was more than ok! This was so much better - for all of us.
Instead of dropping into bed on Halloween night, sad and stressed, I loved our new traditions. I thought about the smile on Conner’s face as he handed out candy to other kids. I thought about how much he enjoyed sorting his candy - not even caring where it came from. I thought about how cute he looked in his pumpkin tee shirt instead of a constrictive costume he hated. I thought about how much pressure was now off of me because, instead of planning all these fun art projects that no one liked, we could simply sit in front of the television as a family and enjoy “It’s the Great Pumpkin, Charlie Brown.” It was perfect - simply perfect - for our family.
Since then, I’ve thought of other ways to help make Halloween accessible for all children. I was so honored to be able to share some of these tips in Parents Magazine recently. My favorite tip I shared with Parent’s Magazine, which I also discussed in more detail in this blog, is to create your own traditions and make Halloween special to your family. Don’t worry if it looks different.
I facilitate many parent groups and Halloween brings up feelings for a lot of families. Still today, even after 25 years, it brings up lots of feelings for me.
I hope you find ways to make your own Halloween fun and enjoyable. If you are a parent of a child with a disability, I see you on this holiday - see you making little and big adjustments that work for your family. If you are not a parent or family member of a child with a disability, I hope you’ll think of ways to make Halloween more inclusive. It is my wish that we can work together to make holidays inclusive for all. To find out more tips, please read the article and share it around.
What are your inclusive Halloween ideas? What other feelings come up for you during the holiday season? I’d love to hear.
Happy Halloween! Enjoy your time with your family and friends.
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