Ask Me Anything – Opening Up About Disability, Anxiety, and Tackling the R-Word

C’mon, pitch it to us. We’re ready!

This October I’m opening up the floor to reader questions as part of my contribution to Down Syndrome Awareness Month. As long as you keep it clean, nothing is off limits – Down syndrome, cerebral palsy, birth stories, parenting, photography. What do you want to know? Find the first six Q&A posts here; three more questions with answers are below.

My daughter, a former preemie (26 weeker) also has spastic diplegic CP. She was diagnosed just after her 1st birthday. I struggle with talking openly about her diagnosis even with close friends/family. Early on it was easy saying oh it’s a preemie thing, but as she’s getting older it’s clear that it’s not just a preemie thing anymore :) How did you get comfortable with talking openly about Sarah Kate? I’m proud of my daughter and amazed by her daily, but I’m afraid of labeling her, even though it’s the truth :)

Sigh. I remember those days. Because hypertonia can be “just a preemie thing” we were in the same position that you are now. Back then, I had an image in mind of what cerebral palsy was (I wrongly thought it included intellectual disability), so I was reluctant to accept that as her diagnosis because I knew she was “smart” so it didn’t feel like it fit. I was wrong, of course, and once I learned more about cerebral palsy, I became more willing to discuss it with others. I’m not sure exactly when the turning point was, but I do know that somewhere along the line I realized that it was good for everyone – Sarah Kate, our friends and family, and we (her parents) – to be educated. The more people understood about Sarah Kate’s condition, the less they feared it, and that could only help her.

I understand your reluctance to label your daughter, but I think she’ll be labeled no matter what – in my opinion, it’s better to go ahead and accept the label so you can move on past it. Consider Sarah Kate now – she’s the girl with cerebral palsy, yes, but she’s also the girl with CP who inspires people because she plays softball! Keep in mind, too, that if people have the sense that you’re open about her condition, they’ll be more likely to ask questions, and every person who takes the time to educate themselves about your daughter’s condition is a potential advocate for her in the future.

Has Sarah Kate suffered from anxiety? My son who is 8, and has CP is quite anxious, particularly about change, and some of his unpleasant treatments.  This makes him reluctant to join in with other children’s activities like sport and birthday parties, even playing at school. Sarah Kate seems to embrace getting involved.

No, Sarah Kate has never had issues with anxiety – I wish I had some words of wisdom for you on that subject, but I don’t. She came out feisty, exhibiting a fighting spirit when she was barely two pounds, so that’s not something we’ve dealt with a lot. Recently she has exhibited more anxiety and emotional outbursts, but I attribute that to the fact that she’s almost ten and female, not cerebral palsy. :) Nathan doesn’t have what I’d call anxiety, either, but we have noticed that he doesn’t always do well with transitions.

I am mother to a three year old girl with CP and developmental delays. I feel I am constantly doing battle with my peers ( at university – midlife career change) over their use of the word retard. Their callousness is really beginning to affect me, especially as its a nursing degree! I’ve tried a few different ways of dealing with it, unsuccessfully. How do you cope? Has there been anything you have said or done that has been effective?

I have no problem at all speaking up to someone younger than me, but peers are a challenge. A teenager expects a 42 year old to scold her; another 42 year old doesn’t. :)  Some people “get” that it’s hurtful once it’s brought to their attention, and those people will work to purge the R-word from their vernacular. Some people, though, assume that those of us who speak up are “too sensitive” and dismiss us in that way. If we’re too sensitive, then they’re justified in saying it. Others consider it one more case of political correctness run amok and dismiss it in that way.

So while I may be hurt or offended when someone uses the R-word, I can’t assume they’ll care about that. They need to know why the R-word is dangerous, and the best analogy I’ve been able to use is comparing it to the N-word. The N-word developed as slang for negro, which means black – an innocuous descriptive word used to describe a specific group of people. Ret-rd (with the pronunciation emphasizing the “re”) is similar – a disparaging slang companion to the word ret-rded, a neutral descriptive word used to describe a specific group.

Society purged the N-word because people recognized that it was one (of many) tools used to discriminate against and abuse a group of people (history is littered with other examples that I’m sure I don’t need to enumerate). When a group of people is either directly or indirectly disparaged, the result is that they are devalued, and when people are devalued bad things happen. Some people won’t get it even when you explain it in these terms, but others will have never considered it from that point of view, and you may reach them. Read my post on the power of language for more information.

Remember at the end of the day that you can only do what you can do, and there will come a point when you may have to cut your losses for your own sanity. The only other suggestion I might have is to try to bring your daughter around your peers. When people put a face with a concept, it touches their heart in a way that a mother’s plea may not. :)

Next Up: Mosaic Down Syndrome, Early Intervention, and Day to Day Photography

Now it’s your turn. What do you want to know?

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