Hello Nicole - December 2001

Dear Nicole,

I have a 4-year-old son who is disabled, and have just had another baby who is disability-free.

When the time comes, do you have any tips on how I explain to David why his sister is crawling and walking, and he is not (and will not)? Many times, David has asked me, “Why can’t I walk?” I tell him that one day he will. I always like to think positively and you never know when there will be a medical breakthrough. I want him to have hope. I don’t want to tell him all the facts of his condition, because I don’t want to scare him. What do you say to a 4-year-old?

Sincerely,

Mom

Dear Mom,

Even though your son is only four, it’s important that you answer all the questions he has about his disability. He has reached an age where he is starting to form his identity and find his place in society, but in order to do this he needs to understand his disability and feel OK about this vital aspect of his life.

The largest barrier most parents face in talking with their children, is the parents’ own feelings of fear, discomfort, or guilt. As you begin to talk to David, you need to very honestly examine your own feelings. Try to be open to discovering that many of your thoughts about disabled life may be negative. We have all been taught that disability is shameful or wrong and should be hidden, ignored, or gotten rid of (cured) whenever possible. But many of us within the disability community find our disabilities to be one of our greatest teachers in life, and we might not necessarily want to be cured. This is not to say that our physical issues aren’t painful or problematic, or that people with disabilities are heroic or inherently “special.” Rather, many of us have found that through the experience of having a disability, we have learned to look beyond exteriors and find deeper meaning in life. In fighting against societal prejudice, we exercise our muscle of inner strength so that many of us have gained a confidence and security within ourselves that we may have never found otherwise.

As a parent, you have the opportunity to lay emotional groundwork that can help your son grow into a self-assured person with a disability. Although it’s unavoidable that when his sister is mobile you will have to explain why David is not, I’m sure this question is already heavily on his mind and needs to be addressed immediately. Try to think in terms of teaching your son how to be disabled and how to live with his disability, rather than trying to show him he is not really disabled or that he can live in spite of it.

It’s important to consider what message you are giving David by the way that you respond to his questions. If he asks you why he can’t walk, and you reply by saying that he will walk someday, you are not answering his question. By not answering his question, you are teaching him that his disability is not OK it is not OK to talk about, it is not OK to think about, and the only thing he can do is hope that his “problem” will go away. Your son will quickly internalize this as meaning he is not an OK person until his disability is cured.

To have a truly positive conversation, you need to commit yourself to being honest. Your son needs to have all his questions answered to the best of your ability. As much as possible, present the information without bias, judgment, or pity. When David asks you why he can’t walk, explain in age-appropriate terms the literal mechanics of his physical condition. Be caring and considerate, but keep the discussion scientific and matter-of-fact. If he asks if he will ever be able to walk, tell him that doctors are working on it, but that at this time they do not have a cure and they may not ever have one. Do not give David false assurances as he will sense they are false and it will increase his apprehension. Of course, you cannot answer questions that you do not know the answer to; in these cases tell him that you will find out, or that no one knows the answer. If he has been given a shortened life expectancy, tell him that he probably will not live as long as many people, but that no one knows how long any of us will live.

It may take years before you can really feel OK about your son’s disability. Please reach out to the disability community for support in understanding the positive aspects of disabled life.

Nicole