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Providing information, education, and training to build knowledge, develop skills, and change attitudes that will lead to increased independence, productivity, self determination, integration and inclusion (IPSII) for people with developmental disabilities and their families.

Regular Lives for Families with Children with Disabilities

Interview with Kathie Snow
Produced by Minnesota Governor's Council on Developmental Disabilities

Diagnosis Does Not Define a Person

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Kathie Snow: I think what's really, really important when a parent receives a diagnosis of a disability in a child is to, quite frankly, not listen to everything they're told. When our son Benjamin was born prematurely, he was diagnosed with cerebral palsy at the age of four months, and doctors and other people literally told us horrible things about our son. They focused on what he would not do, you know, don't expect him to do this, don't expect him to do that.

Our daughter Emily is two years older than Benjamin, and we somehow inherently knew. Maybe we were older parents. I don't know. Maybe it's our personality types. But I just thought I don't think these guys know what they're talking about. It's like how can they predict our son's future? I mean, there's nobody that would try to predict our daughter's future, you know, based on a medical diagnosis, and she had a couple of diagnoses.

And that's one of the things we have to realize is that a disability is first and foremost just a medical diagnosis. It is not the defining characteristic of a person. It's not the most important thing about them. Again, it's just a medical diagnosis. I've got a medical diagnosis. You've got a medical diagnosis. Everybody's got a medical diagnosis of some kind. Temporary, permanent. You know, you've got myopia or you've got sciatica or you've got a temporary diagnosis of a broken arm. Not the most important thing about you. And so I think that it's really, really important for parents to look at the long view.

We have in some ways been brainwashed into thinking that there's something wrong with you if you have a disability. And I have a quote in some articles that I've used and in one of my books that I've written that a woman says, "Do you know what it feels like to be told that you're wrong, in everything that you do, that there's something wrong with you?" And what does a child do with that information? How can they make themselves right? And so I think it's incumbent upon on doctors. And we got referred to early intervention specialist.

So we had physical therapists and occupational therapists and early intervention other kinds of people. And my son had a pedi ortho and a pedi neuro and a pedi ophthalmologist and all these specialists. That of all those people, there was really only one who I liked because they make us feel hopeless about our children. And one of the things that I stress to parents is that, and my son was diagnosed when he was four months of age. He was two months premature, so he was really a tiny little baby. And it took me a while to realize that about myself too.

And now once I've learned, I've tried to help other parents learn it. That the day after a child is diagnosed, the child is no different the day after than the day before. The child didn't change. Who changed are us as parents. And so in my own son's life, I inadvertently, not knowing. You don't know what you don't know, and all of us have done the best we knew to do at that moment in time.

I was just listening to all these so-called experts. And so my way of thinking was, "Oh, my gosh, now he's a child with cerebral palsy." But really he was the same kid. He had cerebral palsy the day before and he had it the day after. We just didn't know what to call it. And all of a sudden we started treating him differently.

And so I would just urge parents to say, sort of check their truth-o-meter at the door and say, "Does this person, does this doctor really know what he's talking about?" I realized that so much of this is about our attitudes and our attitudes drive our actions. And I've been doing this for over 20 years now.

Our son is 26 now. But I realize that if any of the doctors who diagnosed my son or, quite frankly, any of the other professionals who worked with him when he was very young, if any of them had friends that had disabilities when they were going to school, if the doctor who gave me, the pediatric neurologist who gave me all the doom and gloom and told me all the things my son would probably never do and don't expect this and don't expect that, if he had gone to college with a classmate that had cerebral palsy, the way he talked about my son would have been totally different.

He would have said, "Oh, you know what, I went to school with my friend, Henry, back 15 years ago. Henry had cerebral palsy. You know what? Treat your son like he didn't have a disability. Expect him to get a good education. He might need a communication device," which it turns out my son doesn't. "Or he might need a power wheelchair. But just get your child what he needs and let him get on with his life." But instead, we are sort of made to feel like we should grieve. And then our society we've been brainwashed into thinking that the appropriate response to the diagnosis of disability in a child, especially a very young child, and especially a significant disability, that the appropriate response is for us to grieve.

And I think that's a bunch of hogwash. And I tell parents in the articles that I've written, books I've written, "Your child did not die. Your child is sitting right there. Go look at him. He's in the other room while you're reading my book. Go look at him. He's not dead." What maybe died or went up in smoke or whatever word you want to use was the image, the dream of a so-called perfect child or a normal child. But I would just challenge anybody show me a normal child. Show me a normal human being because there is no such thing.

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The GCDD is funded under the provisions of P.L. 106-402. The federal law also provides funding to the Minnesota Disability Law Center,the state Protection and Advocacy System, and to the Institute on Community Integration, the state University Center for Excellence. The Minnesota network of programs works to increase the IPSII of people with developmental disabilities and families into community life.