When my first child was born, everything was textbook perfect. She developed typically, at the same rate and in the same way as my friends’ children. I enjoyed discussing her milestones with relatives, swapping anecdotes with other parents, and talking about her to anyone interested enough to ask. When my second daughter was born, I expected more of the same.
It didn’t turn out that way.
JJ stopped developing at the age of one. She didn’t talk. She didn’t show interest in the world around her. It was another year before she walked. When she was three, she started dropping anything she held and falling to the floor if someone wasn’t holding her hand. At three-and-a-half, we learned the reason. JJ has Rett Syndrome—a rare, progressive neurological disorder. Most people with Rett Syndrome are not able to talk or use their hands purposefully. Many others suffer from seizures or breathing abnormalities, anxiety, vision issues, and difficulties with chewing and swallowing.
JJ’s diagnosis was devastating. By that time, she couldn’t speak, use her hands, or walk unaided. She also couldn’t chew or swallow correctly, had a vision impairment, and suffered from convulsive breath holding episodes. The knowledge that these things might not improve, and could even worsen with time, threw me into a spiral of grief. I didn’t know what to think or how to process anything that was happening.
After the diagnosis, friends, family, and neighbors rallied around. They babysat, brought meals, and offered kind words. But even though I was surrounded by love and support, I felt completely alone. No one could truly relate to what I was going through, and I found it impossible to articulate. If I tried to explain, I usually ended up in tears, which was humiliating and embarrassing. So I stopped bringing up JJ’s condition, especially in public.
After a few months, the grief subsided enough that I could hold a conversation about JJ again. But at that point, I noticed something unsettling. Nobody seemed to want to talk about her much anymore. They either asked quick, generic questions or said nothing at all. When they did bring her up, I could almost see them gearing up to do it, and the conversation immediately became stilted.
Interactions with strangers and acquaintances weren’t much better. Their embarrassment was almost palpable. When I explained JJ’s condition to a nurse during a check-up, she mumbled a few inarticulate phrases, then threw her hands up in the air. “I’m sorry,” she said. “I just really don’t know what to say. I’m sure I’m making it so much worse.”
At a Christmas party, the woman next to me—someone who knew a little about my daughter’s health issues—caught sight of a picture of JJ on my phone. “Is that your daughter?” she said. “She’s so beautiful!” Then her hand flew to her mouth. “Oh no. Is it okay to ask about her?”
When your child receives a difficult diagnosis or has a disability, it separates you from other people to a certain extent. But it doesn’t make us an alien species. We still have much in common with the rest of the world. It can just take a little more time and energy to locate those points of commonality. It also takes a great deal of courage—on both sides—to have honest conversations about our lives. The relatives who had stopped asking about JJ, the nurse at my check-up, the woman at the party—these were good, kind-hearted people. They just didn’t know how to talk with me about my child.
It took me a while to understand why people excluded JJ from their conversations and seemed uncomfortable around me. They were afraid of hurting my feelings, stirring up grief, or using an incorrect word or phrase to refer to my daughter. There simply was no social script for a situation like mine. We talk so much nowadays about celebrating people’s differences, but we never really practice discussing these differences in a relaxed, honest way.
Words and phrases referring to certain groups of people have also become a very tense subject. Everyone has a certain way they want to be addressed, and some people can become very offended if the “wrong” word is chosen. This is why we can often find ourselves in conversational paralysis. I sometimes think people simply don’t know how to refer to JJ. Is she disabled? A child with disabilities? A child with special needs? Better not to talk about her at all than risk using the wrong word or phrase and upsetting me.
People are not mind readers. I have come to realize that I need to let them know when I want to talk about JJ and when it feels like too much. I have also learned that it’s important to consider language and people’s fear of it. My personal philosophy is that I don’t mind what words or phrases are used, as long as the intent behind them is good.
I have begun to implement some of these things and have been happy with the results. I told my good friends that, for the time being, I prefer not to talk about our youngest daughters’ milestones. It’s too difficult for me to hear about their children doing things that JJ might never do. When people like the woman at the party show an interest in my daughter, I smile and encourage them to ask questions. I don’t immediately judge others for the language they use because I want to focus on content and connection instead.
If you are wondering how to talk to a parent of a child with a disability, it’s not rocket science. Find out how much phrasing and language matters to them. Ask if they’re okay talking about their child. When you come up with questions, anything is good, but specific is great: “What new things are they doing?” “How is therapy/school going?” “Do you have any recent pictures or stories?”
We are all faced with so many negatives these days. You can’t pull up Facebook or Twitter without someone denouncing, scolding, judging, complaining, or reprimanding someone else. As parents, we don’t need to add to this mentality. If we choose, we can work toward an atmosphere of openness, connection, and caring.
True inclusion is easier said than done. It involves courage, patience, and understanding from everyone involved. It starts with us giving each other the benefit of the doubt, finding the courage to broach uncomfortable subjects, and taking the time to listen. And, if done right, it ends with something vitally important—a conversation that brings us closer together, rather than driving us further apart.
It takes a village!
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