The Big Bad Wolf

I originally wrote this post 2 years ago but never posted it. I wanted to share it now because I realize how far we have come. If you are new to the fragile X journey, a special-needs journey, or parenting in general — I hope that this post will give you hope. The challenges don’t stop but you do make progress. Our kids grow and learn and there is so much joy!

There are a lot of small joys that parents look forward to for their children. For me, Halloween is one of those joys. Dressing my kids in adorable costumes and watching them light up at the sight of glowing pumpkins and endless piles of candy is a dream come true. The more I learn about fragile X syndrome, the more I understand the challenges we may encounter and the need to adjust my expectations.

When Conor sees a wolf in a book he throws his head back and howls. He loves them! We really thought this was the perfect costume.

We practiced wearing the wolf costume for over two months before Halloween. We tried everything we could to get him to wear the wolf head since things on his head are almost never okay. Dressing up like a wolf doesn’t make any sense to him though. The costume looks weird and worse, it feels weird. No matter how much we practiced we couldn’t get there. As a last ditch effort we pinned the head to a winter hat and Keith was able to get a picture of the kids dressed up together. We also made it to one house (sans wolf hat).

After ringing the doorbell, Conor marched into the house (all the way into the house), noticed that we didn’t follow him, and had a total melt down. Keith and I stood awkwardly in the door trying to decide if we should go into the house to grab him or if it was better to stand at the door with our mouths open, apologizing nonstop to our unsuspecting neighbor. We chose the latter.

As we walked back to our house carrying our inconsolable toddler, I let myself feel sad, overwhelmed, and defeated.

While it is difficult to not give up, we keep trying because Conor keeps trying. There is a small army behind everything that Conor accomplishes but it doesn’t even come close to how hard he works every single day to keep moving forward in a world that doesn’t quite work for him. After I reminded myself of this, I tucked the wolf costume away and went to bed feeling good about making it to one house — because that is still something to celebrate.

The following year we opted for a costume that didn’t need to cover his head. We went to the local business trick-or-treating event near our house and made it to 3-4 businesses before Conor became too overstimulated to continue. He really loved talking about his astronaut costume and telling us that Laine was an alien.

This year the pandemic limited our options. Conor and Laine wanted to pick out their own costumes for the first time and we went to see family instead of trying to do any sort of trick-or-treating. It was the best year yet! You know what else? Conor even wore his firefighter helmet. That’s progress!

XX, Bev