Robert’s Annual "Day of Inclusion"

In Our Arms in the news! Thank you to VeryWell Family for sharing our story.

There is a bias against teenagers trick-or-treating and I appreciate that the author, Taylor Grothe, is addressing why this activity should include children of all ages and abilities. I especially loved that she included children with disabilities in the story. It was a walk down memory lane as I reminisced about the joys of Halloween with Robert. It truly was a special time for him to connect with our community and experience so much joy!

Check out the full article here and my thoughts on inclusion during Halloween below.

Robert LOVED Halloween! He was always eager to sit in his wheelchair at the front door and see all of the fantastic costumes the neighbors were wearing. He was not able to go out around the neighborhood as he became more wheelchair dependent, but he loved wearing his SpongeBob SquarePants or Spider-Man costumes every year.

I have to believe it boosted his thoughts of creativity in some way. Even though Robert could not verbalize such thoughts to us, for him to see Halloween decorations in our home and in our community excited him and lifted his spirits. It brought him so much joy especially because his cognitive ability was limited to a two- to three-year-old child. But inside his growing teenage body was a great capacity for enjoyment of all things involving costumes. Socially, I believe trick-or-treating helped Robert connect with others. Robert was relatively homebound into his teenage years because of his very rare mitochondrial disease that brought with it multiple daily seizures, mental regression, muscle weakness and, ultimately, was the cause of his passing away at age eighteen. He grew progressively less social without the aid of his wheelchair, family members and nurses. Without trick-or-treating in our community, most of our neighbors would have never seen Robert or known him. I sincerely believe he was included in our neighborhood, just like every other child, on Halloween in a magical way. It was the one day each year that he was really "seen" in a special way ... fully dressed in his costume and equally participating in the fun. It was Robert's annual "Day of Inclusion" that our family will always remember. Was their age-bias? I would imagine a young child trick-or-treating at our house who saw Robert (at six-feet tall) seated in his wheelchair at our front door laughing with each approaching costume might have hesitated for a moment. I am sure there might have been thoughts of wondering why he was in a wheelchair, or if it would be okay to come near him. I can also imagine that some parents might have been cautious about whether Robert was "safe" to be around. However, in all of Robert's years of greeting the trick-or-treaters, we never experienced age bias! He was a happy big kid who bounced excitedly in his wheelchair as he waved to each guest. I truly believe Robert thought every one of those neighbors were his friends.

Being a family with 5 children, eventually our high school children did not participate in the evening activities. But it was Robert's twin sister, Victoria, who rarely missed the opportunity to help prepare Robert for the trick-or-treaters who would grace our doorstep! She is three minutes older than Robert, and she delighted in seeing him fully embrace the holiday each year. She did not personally continue to trick-or-treat past elementary school age. However, she and her Robert enjoyed the squeals of happiness (and the candy) unapologetically! All of our adult children may not line up in the streets with the young children in costumes today, but each of them make a point to cherish the memories of their brother with disabilities who was able to fully enjoy Halloween. In my humble opinion ... All ages and abilities are welcome!