Not long after our second child Harry was born, we learned he would have developmental challenges. Like most special needs parents, we were quickly bombarded with a lot of information and were forced to adjust to our new normal while simultaneously moving forward with our lives.
In addition to dealing with our baby and our own feelings, we were very concerned with how our son’s differences would impact his then two-year-old sister, Eliza.
In the beginning, it was difficult to tell that he was different than any other baby. Eliza was eager to feed him and play with him like many doting big sisters. We watched the kids together, excited to see their engagement and joy, but our feelings of sadness and disappointment were overwhelming as the months passed and our son missed milestone after milestone. I had a few conversations with her about Harry’s differences, but she was still too little to understand.
Finally, one afternoon, when we were playing alone together in our living room at home, Eliza randomly walked up to me and asked, “When will Harry walk and talk?”
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 Harry has in his brain? He may never walk or talk. And it makes me sad. How does it make you feel?”
We spent a few minutes discussing what it would be like to have limitations, but how amazing and smart Harry is, despite his disabilities. We hugged and both shed a few tears and I gave her as much time as she needed to process the information. To my relief, that was all she needed. Later that afternoon she continued playing with him the same way she always did.
When the kids were close to four and two years old, we were thrilled to have another baby boy, Bobby. As Bobby grew and his personality and independence emerged, he fell right in step with our family, adding in his own quirky personality. Growing up with one typical older sibling and one sibling with different needs, 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. He teases Harry and refers to him as “Dude” while sticking his face right in Harry’s and smooshing his cheeks, the same way I do to Bobby.
As time passed, and the kids got older, Eliza and Bobby learned to crowd around Harry 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 doesn’t exist in our home. Everyone is equal and has their own individual needs. It’s only when we go out that we notice how much of the world is difficult to navigate for Harry, 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 Harry 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 under my breath or walk away to avoid a confrontation. But then I realized that my children are learning by example and I need to teach them how to handle situations that are challenging or make them uncomfortable. So, instead of getting upset, I explain that most people mean well. That Harry and his wheelchair are different 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 that if we lead by example and engage with Harry 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 Eliza and Harry played together in a bouncy house. When I turned around, she was sitting on a swing, Harry 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 Harry 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 Harry’s. Her goal was to encourage kids to get to know one another through letters before judging them based on appearance.
Bobby loves to brag to his friends about Harry 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, Harry’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 Harry’s differences and keep moving forward. A quick, “He was born that way, but he understands you and loves to play. Right Harry?” does the trick. Very often Harry will answer by flashing them one of his amazing smiles.
For years, I worried 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 from one another or that they would teach me the greatest lesson – that acceptance and inclusion starts at a young age through exposure and conversations taught at home.
Some names have been changed for privacy.