My son has a rare genetic syndrome. That doesn’t mean that I know how to talk about it.


One of the most complex issues since receiving my son’s diagnosis of Kabuki syndrome has not been dealing with the symptoms, disabilities, or extra needs that he has. It has been not knowing how to talk about it with people – family, friends, acquaintances, support group members, and strangers. And I don’t mean I don’t know how to tell people that my son has a very rare genetic syndrome called Kabuki syndrome (despite my dislike of the use of the term ‘kabuki’). I mean, I don’t know what to say after that.

When your child is diagnosed with a syndrome or disability, especially one that has a broad range of phenotypes within the syndrome, the doctors don’t really give you much help as to how you are to process it or how you are expected to talk about it with other people. At least not in our experience.

First of all, before the mess of knowing how to talk about disabilities, I had to figure out how I felt about my son being diagnosed with a syndrome that comes with disabilities and potentially serious physical problems. It took a little while to try and put words to how I was feeling. But I eventually came up with some.

Relieved.
Validated.
Scared.
Confused.
Sad.
and even (and I’m not proud of this at all) vindictive.

As I was able to put words to my feelings, I quickly realized that how I felt about Micah’s diagnosis differed in a number of key ways from my wife’s feelings. I found that I was more relieved by the diagnosis than she was. I thought knowing that we finally had something concrete to work from was huge. Up until this point, we felt like something was  different about Micah, but we just didn’t know what it was. This diagnosis validated these feelings and hunches, and gave us a solid place to work from.

My wife, however, was more focused on what Micah’s future might look like. How would this diagnosis affect his future? How would it affect his younger brother? How would it affect us our family’s future?  This led her to feel more sad and more filled with grief than I was first experiencing. So when she and I even shared our reactions to the diagnosis, we weren’t really even on the same page.

And if my wife and I aren’t on the same page about something as personal as this, then there was probably little hope that we could expect other people to respond in ways consistent with how we were processing and feeling about the diagnosis, and the disabilities that come with it.

Micah and Missy

***

So it’s been about two months since Micah was diagnosed with Kabuki syndrome. I’ve read through journal articles, support forums, and probably every website that seems to have something to say about Kabuki syndrome. I’ve read articles about the art form and history of Kabuki itself. I’ve even read articles about Kabuki’s influence on people like David Bowie.

I’ve learned a lot about Kabuki syndrome over the last couple months. Unfortunately, I haven’t learned how to better talk about the fact that Micah has a genetic syndrome that encompasses things like childhood apraxia of speech as well as other learning delays or disabilities.

***

Now I know there’s a million articles out there by parents who have strong feelings about how you are to talk about their kid’s disabilities. In fact, I read an interesting article today about “inspiration porn,” where people post stories or videos about children with disabilities, but how those same videos rarely focus on the story of the actual person with disabilities and end up making whomever is associated with that person into the hero for being so accepting or inclusive. (i.e. The prom king who takes the girl with Down syndrome to prom.)

The article also talked about how these stories feature how these kids in some way or fashion “overcome” their disabilities. Something that the author was not okay with.

Although I totally understand the annoyances with “inspiration porn,” there were a number of details in that article that helped me realize I just have no idea how to talk about this stuff. The concept of “overcoming” a disability sounds like a good thing to me at first, and it’s only after reading why this isn’t a good way of framing things that it makes sense to me.

I guess what I’m saying is that even though I have two uncles with Down syndrome, and a son recently diagnosed with Kabuki syndrome, knowing how to talk about any of this is still not intuitive for me at all. There’s definitely a learning curve. But the thing is, I’m absolutely positive there are a number of legitimate views about how to talk about disabilities. And I also know that there are some pretty sharp disagreements about how to talk about disabilities. Unfortunately, I don’t really know what they are, nor do I know who believes what, nor why.

Micah and Ezra in the Wagon

***

Words are important. I know that. I make arguments for the proper use of words frequently. The words we use, and how we use them are incredibly important. That’s one of the reasons why not knowing how to talk about this stuff bothers me so much.

I know for sure that “retarded” is no longer appropriate. It’s considered the “r-word” by most these days. And there’s really no good use for it anymore.

But that seems pretty easy to me. Most people know that these days.

Beyond that I am really just feeling my way in the dark right now. I have no idea the “appropriate” language to use. And believe me, this isn’t necessarily some knock on our “overly-sensitive PC culture.” Like I said, I believe that words matter. My problem is that I just don’t know which words matter. I’m completely ignorant.

***

So far the easiest way I have found to talk about Micah’s syndrome and his delays has simply been to say that he has special needs. I say that because it’s true. It’s easy to understand. I don’t think it’s offensive.

Because Micah has Kabuki syndrome he has special needs, our family has special needs. It means we have to stick to a pretty regular schedule and routine for Micah. This means we can’t do things that other families can do. For example, we can’t meet as a family with one of our church’s small groups because they all meet in the evening around 7:00 PM, which is Micah’s bedtime. To keep him up past that time disrupts his routine so much that over the next couple days he will be more temperamental. And we’ve found it’s just not worth it to disrupt his schedule like that. Micah is not able to simply sit somewhere and not feel the need to move around and be busy exploring. This makes it hard sometimes to go anywhere where we know we will have to sit down for longer than a few minutes. And that included going out to eat until only fairly recently.

Anyway, that’s just one area in which he presents himself to have special needs as compared to most children his age. That’s how I’ve started to frame our situation more. We are a family with special needs because we have a child with special needs.

Micah in the doorway

***

Most new parents know that unsolicited judgments advice about parenting is a constant stream into your life. You have to learn the skills pretty quickly of how to politely smile towards the woman at Target who tells you that you need to appreciate these beginning years more than you are because they will be out of the house before you know it. Those sorts of things.

I know it’s dangerous, but I’m going to go ahead and ask for some advice now. You can tell me whatever you want to about how you feel about how to talk about disabilities, diseases, syndromes, special needs, etc. I’ll listen.

I especially would love to hear from parents of children with special needs who are farther down the road than my wife and I are right now. Any great resources? How did you learn how to talk about these sorts of things?

I did just come across an interesting article from NPR regarding this very issue. Too bad I’ve already written this post. But I think there are a number of things to learn from it. If you’re interested in this topic, maybe you’ll like the article too.

It’s called, “How the Language of Special Education is Evolving.

(If you are unaware of the sharp opinions about this topic, just check out the comment section of that article.)

Micah smile

***

Anyway, I’m trying to learn. I’m trying my best. And that’s all that I can do right now.

2 thoughts on “I Have No Idea How to Talk About My Son’s Disabilities

  1. Almost a year in a half into our diagnosis with Williams Syndrome – I still stumble over my words all the time. I never know the right words to use to describe my son and Williams Syndrome to people new to those two words. I won’t lie, it’s hard. Williams Syndrome is like Kabuki Syndrome in the fact that no two cases are the same, which makes it even trickier. I don’t want to sound like my son is “better off” than other kids with the same diagnosis, there is just no way to compare, and to people who don’t live in this world – that’s hard to understand. I use the term special needs often, it seems to be about the phrase that when it comes out of my mouth – it feels right.

    I hope you get some more people to chime in – but I’m interested to see what they say!

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