Can They?

By Lorraine Fuller

I am a member of an E-mail list for parents of children with limb differences. Recently there was a discussion about how often people see our children as being unable to do things. I was amazed as person after person related experiences. Parents had been told that their children would never be independent, would never feed themselves, or never participate in sports. There were other stories, stories about rude comments people had made to or about the children.

The saddest part of many of the stories is that some of the people who made the remarks were people one would think would know better, physical therapists, doctors, teachers, occupational therapists, and other professionals. When a parent is faced with a child who is different in some way, we tend to rely on the opinions of others, especially those who are supposed to know something. While those often-incorrect assessments from professionals can be damaging, the more hurtful ones often come from family members.

Who among us has not felt the sting of someone telling us how sorry they are that our children are such burdens? Who has not quietly fumed when someone talked about one of our children in front of the child as though the child was not there, or worse, treated our children as though they were simple-minded. How many of us have been made out to be saints or martyrs for loving our own children? How many times have we heard comments of amazement when our children do the simplest of tasks?

What can we do with all these comments? Let’s take the professionals first.

When one of them says that my child can’t do something, I ask a simple question. I ask them how many children with limb differences like my daughter’s they have known. If they have known very few, or as is more often the case none, then I figure I know much more about my daughters capabilities than they do. If they have worked with many children like her, then I will listen more closely to their opinions. Just for the record, I think the only thing my daughter has been told she can’t do by anyone at Scottish Rite Hospital was to take off her own cast after surgery. Naturally, she did that anyway!

I was, however, told by another professional that she would not be able to participate in dance classes. That professional was wrong, she loves dance and just completed her first big recital in May. Had I listened, my daughter would have missed out on something she loved. That professional was thrilled to have been proven wrong and now has an entirely different attitude towards my child and, hopefully, others like her.

The more difficult situations are those with other people who make comments about what a child can or cannot do. Each person has to deal with those differently. For myself, if the person is a stranger who approaches, it depends on my mood and my daughter’s mood, and how much time we have. On a good day, we might be glad to answer questions and educate someone. On a bad day, I remind myself that her body is hers and none of anyone else’s business. I try to remember that most strangers who talk to us have had no experience with limb differences and mean no harm.

Of course I have had my share of rude questions. Once while standing in a line holding my daughter, a woman asked me if I took drugs while I was pregnant. Some people are simply rude and we don’t have to put up with them. However, another time I was approached by a woman who seemed rude at first, staring very hard at my daughter’s legs. In reality she had honest questions. It seemed that her sister had recently undergone an amputation and she was thrilled to see how well my daughter was walking with her two prosthetic legs. It gave her the hope she needed to know that her sister would walk again.

The most hurtful comments of all seem to come from those closest to us. Family and friends can say stupid things. Again, I try to remember that most of them really don’t mean to be hurtful. For those that do, I try to avoid them. For my own family, I have had to say very little to them. They have seen for themselves that there is very little my child cannot do. I know some who have sent articles on amputees to family members or brought them to events like the PALS picnic so that they could see that these children play just like any other children.

As a parent, I try never to tell my daughter she can’t do anything. Well, OK, I do tell her that all the time. I tell her that she can’t stay up past her bedtime, that she can’t have cookies for breakfast, that she can’t play in the street, that she can’t have a new Barbie every time we go to the store. And yes, I get comments about that, too. Some people believe you should not discipline a child who has differences. The fact is, treating her like a china doll who cannot do anything for herself, giving in to her every whim, or protecting her from every possible difficulty in life would handicap her far worse than missing a few limbs. Our children can do so many things. They may not do them the same way we do, and they may run into a few things that they truly cannot do, but I believe they can do far more than many people think they can.

But then, as a parent, you already knew that, didn’t you?

Lorraine Fuller is the mother of Paulina who has differences in three limbs.