Our Modified Halloween
I started planning over a month in advance. Bryan, my 2 1/2 year old son, goes through phases of favorite movies/shows. He watches one over and over for tv time every day until he has it memorized. Then he wants something new. It takes some time to find his new favorite, but once it’s found the cycle continues. A recent favorite was the movie Trolls. He loves the colors and music. We listen to the soundtrack almost every day. He has every song memorized.
So we were all going to be trolls for Halloween. Max would be Prince Gristle, and I would be Lady Glitter Sparkles. Emily-Rose would star as a tiny and adorable Princess Poppy. It took me a while to decide who Bryan would be. He could go as Poppy’s counterpart, Branch. But Bryan loves all things shiny, so I opted instead for Guy Diamond. The silver sparkly troll with the autotuned voice.
Most of the costumes were easy to throw together with supplies from Goodwill and felt glued together. But Guy Diamond had to be made from scratch. I found a light silver material at Hobby Lobby (not as uncomfortable as that silver sequin stuff) and used a shirt and pants of Bryan’s as patterns. I spent a few days cutting and sewing. I had a special sequin elastic for the pants. I sewed tiny long sleeves, which if you’ve ever sewed sleeves on a shirt you know how annoying those are, especially in a small size.
Our first opportunity to wear our costumes was for a church Halloween party. I had showed Bryan his costume. He was enthralled by the material.
I got everyone else ready first, then started to put Bryan’s costume on.
10 minutes later we had a screaming, sobbing child with no costume and a pile of silver fabric torn at the seams.
So we threw a green shirt on him, put some blue chalk in his hair, and said he was Branch.
For the other Halloween activities we attended he wore his batman shirt.
Instead of trick or treating, we opted for community trunk or treating events, which are faster, happen earlier, and are way less of a hassle.
Bryan preferred to hang out in his stroller, something his early childhood educator suggested to help him feel more secure. We got a lot of looks, having a child in a stroller who looked much to old to be in a stroller for trunk or treat. Not to mention his costume was not nearly as elaborate as other children’s. As we moved from car to car, he lifted his bucket for candy, ignoring the smiles and hellos and how are yous from the candy distributors. He tried once to repeat after me the words, “trick or treat,” but man those are some difficult sounds for him.
He had fun, but 20 minutes was more than enough. All the people, all the decorations, strangers interacting with him… it’s a lot for him to take.
I tried to ignore the strange looks. The other parents who wonder, “If he’s in a stroller, is he even old enough to trick or treat? And if he is older, why is he in a stroller?” I tried to ignore the awkward glances between those handing out candy when my son stared straight ahead as he lifted his bucked, not even acknowledging their greetings and comments.
Even though his speech pathologist says not to work on please or thank you right now, because it can discourage learning new vocabulary, I felt obligated to encourage him to repeat “thank you” when candy was placed in his bucket.
You see, at home, in our own space, I forget that my son is different. Which is good. He’s just himself, and that’s our normal. We don’t have these expectations for him. We see the progress he makes. But when he’s thrown into these social situations, surrounded by other children his age, confronted by expectations for social behavior he doesn’t understand or even notice, it becomes so much more clear to me how different he is. And as much as I don’t want it to, it makes me sad.
Bryan, my son, has autism spectrum disorder. His symptoms have been around pretty much since he was a newborn, but they became noticeable enough for concern around 17 months. He began early intervention services around 19 months, when he received an educational diagnosis as at risk for autism. Shortly after his second birthday he was assessed by a childhood psychologist and given a medical diagnosis of autism spectrum disorder.
The moment I realized Bryan’s delays and quirks could be red flags of autism, I fell apart. I grew up aware of those in my community with autism, down syndrome, and other wildly misunderstood diagnoses. I watched their parents in awe of what they battled every day. I thought of how amazing they were. How patient. How strong. I often thought to myself that I didn’t know how I would ever handle something like that. And in that moment, when I realized the spinning in circles and not knowing his name and the obsession with lights were all more than just “quirks,” I felt completely lost. I thought to myself, “I am not that mom. I don’t know how to be that mom.”
The morning after my realization, everything changed. Our lives changed. A fire was lit beneath me, and I made dozens of phone calls. Just a couple weeks later Bryan had assessments completed and other assessments scheduled, and was enrolled in early intervention services.
Receiving his medical diagnosis was a check off the list of things to do to get him everything he needs. Yes, it made it all real and official, but we were ready for it.
No one is “that mom.” I’ve learned that the strength to be “that mom” comes from another source. It’s learned and developed. It begins with that mama bear instinct that motivates you to advocate for your child. From that place that wants to scream at everyone, “he’s doing his best, and this is a huge step for him and he’s handling it so well!” But it’s also that humility and patience that comes as grace from God when you instead smile and choose to not be bothered by the confused stares and judgmental sighs. To brush off the murmured comments when your child has a meltdown at the hardware store because he really really wants to shine the LED light on the counter in his eyes.
Our lives are so different now. Every day is a conscious effort to teach Bryan language. To practice social back and forth. To provide sensory stimulation so he doesn’t seek it in dangerous ways.
I was asked today by the childhood psychologist who diagnosed him how many hours a week we spend working on communication. I sat and thought of all the things every day we encourage communication in. How every interaction involves repeating ourselves over and over, how we work on pointing for 5 minutes at a time to choose what book to read or what snack to have. The picture boards and cards, holding objects to our face, waiting patiently for even a moment of eye contact to signal social interaction. I simply said I didn’t know how many hours, because it’s all the time. It’s everything we do. Every day. Even during his free play and tv time I’m thinking about his progress and planning how to handle routine changes that week or how much I’ll try to challenge him that day based on his current mood.
A couple days ago, he snuggled up next to me and shook with excitement, which he often does. Then he looked me right in the eyes and said, “moma.” That was the very first time, ever, he has looked at me, and called me mom.
And that makes the hours, all the work, so worth it.