One Parent's Perspective

Maybe you are a caring doctor, nurse, speech therapist, social worker, teacher or case manager and I am a loving mother or father. My baby was diagnosed with something at birth or labeled with something else as a young child. Maybe you need to break this news to me for the first time or maybe we'll be seeing a lot of each other this coming school year. What seems clear is that you and I need to work together for the benefit of this child...my child.

Before you tell yourself that I am in denial...first stop and think. What is denial as it relates to a parent of a child who was born atypical? What function does it serve? Denial is pain control. Denial may be helping me to function and survive the day. As long as my child is getting needed services, treatment, therapies, and is loved and cared for...is it so bad? If you think my child will never be able to achieve something and I think he can and he will...do we need to resolve our difference of opinion by putting a big red sign on it that says, "Denial"?

I don't want to be harsh or come across as sounding bitter. I do want you to put yourself in my position for a minute or two. I want you to realize how powerful your words to me are and how much your attitude impacts me and my child. Because of your position and our vulnerability your words, and more importantly, your attitude, have the ability to ruin my day...or even change the course of my child's life. That's a big responsibility. Now you know how I feel 24 hours a day...responsible. I don't get a break from it. That's why I often feel so overwhelmed.

What do I want you to know about disability? I want you to know that disability does not define my child or tell you who my child is. Disability will not tell you anything about my child's personality or what he will or won't be able to do. Please see my baby as a baby first before you see her as a baby with a condition. See my child as a child first before you see him as a syndrome or a disability. See me as a parent. A parent who loves her child and doesn't want to hear him referred to as "retarded" or "damaged" or "impaired".

If I am new at this...gently remind me with your words and actions that my child is a child and not a project. He is not a diagnosis. She is not the reason for my being. I do not have to lose myself in his care or sacrifice my life. As weird as it may sound...in order to keep my perspective I need to realize that I am not the one who has the disability. Support me to have that healthy separation that I will need to parent this child for the long-haul.

Thank you for caring. Thank you for being here for me and my child.