What Happened to Her?

From the very first day, we have known that parenting a child like Helena would be a little different from parenting our other children. Because of her disability, we have had to adapt to a different way of viewing the world. One of the ways in which we have had to adapt is by having to choose how to respond when people outside of our tight-knit family interact with us. We often deal with confusion, pity, curiosity, and ignorance.

I have found that we have responded to these types of situations in a variety of ways.

1. Advocating

Because of Helena’s condition, we have to spend a lot of time interacting with caregivers. Many if not most caregivers have not even heard of arthrogryposis. We have had to spell it for most nurses we interact with. We have had to educate medical professionals on the condition prior to general treatment. We have had to change doctors due to differing advice, and sometimes, simply to make her treatment plan more in line with how we want her to experience life.

Of those who do know what the condition is, most are very surprised at Helena’s ability level. They expect her to be very weak, very dependent on others, often making false assumptions about her level of disability.

Even among AMCers, every child is very unique and some are more severely affected than others. Arthrogryposis is an umbrella condition with many causes. There are approximately 1 in every 3,000 births born with Arthrogryposis. Some types of Arthrogryposis are actually closer to 1 in 10,000 births. The condition is considered an orphan condition, which means that it affects fewer than 200,000 people nationwide.

Statistically, people born with arthrogryposis and survive past birth usually have above average intelligence. I believe this is because they have to come up with their own ways to be independent from the earliest moments of their lives. They utilize critical thinking from a very early age.

There are many questions in medicine that are not answered, and arthrogryposis is one condition that is not well understood. This means that we are often pioneering in the medical realm and have to decide for ourselves how to best advocate for Helena.

2. Ignoring

There are often kids in places like the grocery store who want to ask us questions while their mother quickly whisks them away so she isn’t embarrassed by them. There have been long lines of kids on a field trip who one by one take a stare as they pass. There have been numerous people who, appearing to assume the worst, stare at her casts from afar and glance to others to indicate their pity or disapproval. There have been kids at the park who seem to enjoy playing at first, but when they notice her physical difference, think up ways to distance themselves from her. (But it is always interesting to see how she is able to keep up pace. She is a leader – one of my relatives recently called her an Alpha female. This is true!)

Ignoring in these scenarios has worked for most of the last five years. We have tried to stay so focused on our enjoyment of each other that we either don’t notice the staring – or can distract ourselves from it. Despite its success for us, however, it has become less effective. While in Scottish Rite Hospital for treatment, we took Helena to the Perot Museum in Dallas. We went at 4:00 p.m. the first day and it closes at 5 p.m., so we we had to make another visit the next day to see the rest of the museum. On the first day, while we were in the elevator with another family, I noticed Helena covering up her hinged knee.

“What’s wrong with your knee Helena?” I asked her.

“It just hurts,” she replied.

The next day when we returned, we were on the elevator with other people again. I look at her and she once again had her knee covered up. Then it occurred to me what was actually going on.

“Helena, why are you hiding your knee?” I whispered.

“Because I don’t want anyone to look at it,” she replied.

I later replied to her that her knee was beautiful the way it was, that she was special and she shouldn’t worry about others looking. But deep down, I knew that was not a response that is any way satisfying to her. I haven’t quite figured out what I should say to embolden her in times like these. Ignoring has been a response that has worked for us as adults- but if it is Helena, this isn’t so easy – she notices, even if we are ignoring the stares. So we will have to find new ways to handle it.

3. Explaining

We often get questions or probing comments about Helena’s legs, so we feel that we have to do a lot of explaining to complete strangers. Interestingly enough, these questions most frequently come when she is most able – in braces, casts, or using adaptive equipment. When she has no braces on and we have to carry her everywhere, no one asks us about her disability at all. (She is almost 5 years old and this would mean we are carrying her If she is not using adaptive equipment. Is that not unusual?) People only notice when something is vastly different from the norm.

There are lots of questions we hear, but the most frequent question we hear from people is ”What happened to her?” I struggle with this question the most of any question asked. First of all, whether or not it is intended, it implies that there must be fault somewhere. I always answer with a polite answer to educate people on her condition, but the question always saddens me a bit.

Do things always have to be someone’s fault? And whose business is the fault anyway if it were? Sometimes, things just are what they are and nothing “happened.”

The second reason this question bothers me a little is that the question is a reminder that how she acquired her condition is something that can’t be answered – and can’t control. We will probably go the rest of our lives and never know why Helena has Arthrogryposis.

I once thought I understood the reasoning from a scientific viewpoint. I had heard a presentation on the condition at the annual Arthrogryposis Conference about how delayed anterior horn cell activity can cause the condition, and that the length of the delay causes the severity. This theory made perfect sense to me, so I felt sure that this was our explanation of “what happened.”

Last Fall, however, we had a child neurologist run an EMG on her to rule out any other conditions she might have. That test indicated that while she still has the Arthrogryposis condition as her label, the anterior horn cells were working normally and probably not the cause of her condition . Therefore, the most logical explanation no longer fits.

We sometimes have to be okay with the unknown, and Helena’s condition is a daily reminder of this. What we do know is that Helena is uniquely designed by God for a very special purpose. Our role as parents is to prepare her for her purpose, not worry about things we can’t control.

4. Educating

At least one time out of three, the curious kid at the grocery store gets his question out before mom whisks him away. I always take the time to answer these kids in developmentally appropriate language- and have beenDr training Helena to do so when she is ready. Usually, parents are relieved with my response and we have a nice conversation. A couple of weeks ago, for instance, we met a Pentecostal family with 5 little girls. I found it curious that their mother had the same initial reaction of trying to hush her kids – and the same sense of relief when we interacted. These kids live their lives daily as being “set apart” – with dress and conventions that are sometimes quite different from modern culture. These kids should be accustomed to living with visible differences, but there are always new scenarios in which one is challenged to realize that every person’s norm is different.

I then got to thinking about how when we were staying at Ronald McDonald House, I had the same response at times when Helena would ask me about other children staying there. I understand from both perspectives the difficulty that curiosity can present. In those times, I asked Helena to try to wait and ask me privately – and to always try to be kind and friendly to the child when she saw them or interacted.

From a personal perspective, I would much rather a person be friendly and politely inquire about her condition than whisk their child away In embarrassment. Not all parents of differently abled kids are necessarily going to feel that way, mind you, and I think many times people are becoming too informal with their comments and questions. Even so, I prefer to clear the air.

For me, it is more of a relief to not have to explain to Helena why someone rushed their child off so quickly instead of being friendly. The Golden Rule could be applied here – how would you want someone to interact with your differently abled child? Would you want a parent to rush their child off to avoid asking them questions? If you live a daily reality with a disability, is there anything that another child would remind you of that you aren’t already dealing with every second of the day? If you feel your child’s behavior may potentially embarrass you, what skills can you teach your child to prevent that scenario?

Wouldn’t it be refreshing to see another person’s child demonstrate kindness and empathy toward your child – and even treat them as a new friend, rather than rush away due to fear of the unknown?

As we have progressed through the current casting experience, we have been brainstorming ideas that might make these interactions a little easier for Helena. Awareness always helps. We will continue on this journey as a family – through these casts and beyond. As we go, we will have to continually figure out ways to address questions about disability – and teach others about showing acceptance.