What My Children Taught Me About Acceptance and Inclusion
Not long after our second child Henry was born, we learned he would have developmental challenges. Like most new parents of children with disabilities, we were forced to quickly learn how to care for him, and move forward with our lives. But while my husband and I navigated our new normal, we were simultaneously concerned with how our son’s differences would impact his then-2-year-old-sister.
In the beginning, it was difficult to tell that he was different than any other baby. Elizabeth was eager to feed him and play with him like many doting big sisters. She showered him with love, and we kept their routine as normal as possible. We watched the kids together, excited to see their engagement and joy, but our feeling of sadness was overwhelming as the months passed and our son missed milestone after milestone. We wondered when Elizabeth would notice his development was different. We had a few conversations with her about Henry and the differences he might have, but she was still too little to really understand.
Finally, one afternoon, when we were playing in our living room at home, Elizabeth randomly walked up to me, and caught me completely off guard. “When will Henry walk and talk?” she asked.
I paused for a few seconds to gather my thoughts, and then looked her right in the eye and honestly answered. “Do you remember talking about the boo-boos Henry has in his brain? He may never walk or talk. How does that make you feel?” We spent a few minutes discussing what it would be like to have limitations, but how amazing and smart Henry is, regardless of his disabilities. We hugged and both shed a few tears and I gave her as much time as she needed to process the information. And then, to my relief, that was it. She ran back to him and continued playing with him the same way she always did.
When the kids were close to 4 and 2 years old, we were thrilled to have another baby boy, Benjamin. As Benji grew and his personality and independence emerged, he fell right in step with our family, adding in his own quirky personality. I don’t remember specifically talking to Benji about Henry and his differences. Growing up with one typical older sibling and one sibling with disabilities, he has found his own way to engage with each of them. When they were little, the boys shared a room and quickly became thick as thieves. So much so that, at times, his sister gets jealous. He teases Henry and refers to him as “Dude” while sticking his face right in Henry’s and smooshes his cheeks, the same way I do to Benji.
As time passed, and the kids got older, Elizabeth and Benji learned to crowd around Henry when they do homework, read a book or watch TV. For them, it’s instinct to go to the person who can’t go to them. All three kids often have sleepovers together and crave one another’s company, and they modify their play so all three can enjoy their time together. Disability isn’t an issue in our house. Henry is just Henry. It’s only when we go out that we realize how much of the world isn’t inclusive or accessible, and that realization is upsetting for all of us.
Aside from always planning ahead when we go someplace new to confirm we can get his wheelchair into the building, we have to navigate how the rest of the world perceives him. Kids stare and grown-ups often ignore his existence, afraid of embarrassing themselves if they engage and he doesn’t respond quickly, or at all. At the movies or in the mall, parents shuffle their children out of the way, as if Henry needs excessive room to get by. Sometimes we overhear children ask their parents why he looks different, and they are often shushed.
Initially, I would get angry and mutter something or walk away to avoid a confrontation. But then I realized that my children are learning by my example and I need to teach them how to handle situations that are challenging or make them uncomfortable. So, I started to explain that most people mean well. That Henry and his wheelchair are different than what most people are accustomed to seeing and that most grown-ups don’t want to embarrass themselves by saying the wrong thing. Other kids are trying to make sense of something that is new and different to them. And that if we lead by example and engage with Henry the way we do at home, others may do the same.
One summer afternoon, a couple of years ago, we were at a friend’s house for a children’s birthday party. I walked away for a minute while Elizabeth and Henry played in a bouncy house. When I turned around, she was sitting on a swing, Henry on her lap, surrounded by a group of little boys. They were peppering her with questions about him, and I rushed over to intercept and help defer attention away from them. But she didn’t want any help. She very confidently shooed me away and continued her story about how Henry has gym class at his school and how he’s gone adaptive surfing while the boys sat open-mouthed and curious.
The following year, my daughter tried to implement a pen pal program between her school and Henry’s. Her goal was to encourage kids to get to know one another through letters before judging them based on appearance. Benji loves to brag to his friends about Henry and the basketball games they play together. He holds his hand on rides at Chuck E. Cheese and makes sure he’s included at parties.
Today, my children are 10, 8 and 6, and their bond grows stronger each year . I find them giggling together and tickling one another, Henry’s personality shining through his eyes and smile. As the kids grow and we add new friends to our circle, we have found fast ways to explain Henry’s differences and keep moving forward. A quick, “He was born that way, but he understands you and loves to play. Right, Henry?” does the trick. Very often Henry will answer by flashing them one of his amazing smiles.
For years, I worried about how we would manage our children’s growth and development, knowing they would experience life in vastly different ways. I had no idea how much they would adapt and learn so much from one another , or that they would teach me the greatest lesson. Understanding differences and fostering inclusion starts at a young age and at home.