Regular Lives for Families with Children with Disabilities
Interview with Kathie Snow
Produced by Minnesota Governor's Council on Developmental Disabilities
Listen to the Voices of the Real Experts
Kathie Snow: Regarding early childhood and therapies, I think we have to question conventional wisdom. And that's what I've done since I started learning in the field from the people that are the real experts. And the real experts in the field are people with disabilities themselves. We as parents like to think that we're the experts. If I'm presenting in a room full of parents, I'll say, "Who are the real experts?" And all the parents raise their hands and say, "We are." And I say, "Well, we like to think that." And, of course, professionals who are paid to be in the field think that they're the experts. But the reality is that it's the people with disabilities.
And it was people with disabilities when I was in the...when my son was three years old and we were living in Texas at the time, and I was in the very, very first class of Texas Partnership Policy Making, which, of course, was started in Minnesota, Partners in Policy Making program. And so Texas started it.
And I was at the time, for lack of a better term, therapy mom of the year. I meet parents all across the country who are also therapy mom of the year. Some of them are therapy dads, but it's usually the moms. Because when my son was diagnosed, all these doctors and professionals said, okay, physical therapy, occupational therapy, speech therapy, all the early intervention stuff, home programs.
And I did it all. In fact, as parents, what we're led to believe... And I'm not unique. I think that most parents follow a very, very similar path up to a point. That we believe if somebody tells us, "Oh, your child needs therapy." Well, obviously, if our child needs it, it must be a good thing. And as parents, we love our children and want to do what's best for them. So our way of thinking for many of is if a little bit of good is good, then more is better.
So I wanted more for my son. And, again, that's very, very typical. I mean, I meet more parents that are like that than are not. And so we were doing therapy seven days a week. I began therapy mom of the year. And I had my tiara and I had my little banner, therapy mom of the year. If they had given such a prize, I would have won it.
And so the therapist, I'm taking my son to the therapy clinic, and the therapists were coming into our home. And I'm doing the home programs. We spent part of...some government programs were paying for some of this, but then our private insurance was. And we're still paying the co-pay. We're going broke but nothing's too good for your child. I bought therapy equipment, and I turned our living room into a therapy clinic. I had the big orange therapy ball and the therapy benches. And all the professionals said, "Kathie, you are such a great mom. Gosh, I wish we had more parents like you."
And the reality was that I hated our lives. And some people would say well that's, yeah, because you have a child with a disability. And what I realized was, that's when I realized the day after my son was diagnosed, he was no different than he was the day before. He was the same baby. He was the same child. I was the one who changed. And I started treating him like a child with capacity. I started treating him like a child with a disability in a sense that I let all these services take over our family's life.
When I said I hated our lives, that's what I hated. It wasn't my son. He was the same kiddo. It was how our lives had changed because of the therapies and interventions. Well, I didn't know what to do about it. That was the only path I knew. Because that's all people tell you. And the work I'm doing today in my presentations and my website and my books and stuff is to try to help parents and other people know there's a different path you can take.
Well, long story short was, I didn't know what to do. The only power I thought I had at the time was the power to say to no to more. Because I was the kind of parent that they'd test my son all the time. Oh, he's so far behind here. He so far... He's this age, but he really functions at this level and all this kind of stuff. And so before whatever they'd offer, we have this program or that program, I'd say. In fact, give us more.
And I started saying no. and I didn't cut back. I didn't cut back on anything . I just said, no, we're not going to do more. So we're still doing therapy seven days a week. We're just not doing it ten days a week instead of seven days a week. And so they started wagging their fingers at me and said, "Oh, but your son is at such risk," you know, blah, blah, blah. And so I said, you know, I said, "No, we're just, we're not going to do more.”
So I went from being called a good mother to being called a non-compliant parent. And I said, okay, so be it. Well, by now, my son is three years old and I get into the Partners in Policy Making program. And, of course, it was started by people here in Minnesota and Colleen Wick and Ed Roberts and right away they started helping me see things so differently. But the other people who helped me see things differently were the self-advocates, the people with disabilities who were my classmates.
And so here I have this little three-year-old child with a disability and I have all these other friends who have very young children with disabilities and a lot of the parents in the class had young children with disabilities. Well, here's a 35-year-old man with cerebral palsy and here's a 45-year-old woman with cerebral palsy, and there were people with other developmental disabilities too.
But I thought, I could probably learn something from them. And so I got to know them over the eight months, eight weekends of Partners training, and what they told me just literally blew my mind and I didn't know what to do with it. But they told me what it was like to be taken to therapy all your life. And the message of therapy to the child – it's not the message we intend – but the message of therapy to the child is there's something wrong with you. You are broken. And we, your loving parents, we're going to keep taking you to therapy until we say you're okay by our standards.
That's the message the child gets. Again, it's not the message we intend. Well, one thing as an aside I realize is that we all have the best of intentions. I mean I had the best of intentions in getting my son all those therapies. I mean, I'm trying to be a good mom. But we have to stop and think about what are the unintended negative consequences
And so when these adults were telling me that, I was like wow, it's like the proverbial there's two sides to every story. At the time, however, my...the voices... I should have been listening to people with disabilities, but their voices were not as strong in my head as the voice of all the professionals. Because I've got all these professionals saying, "No, no, no. Your son needs therapy."
Yet none of them are telling me there might be some unintended negative consequences. The unintended negative consequences that the adults testified to of their own lives of what it feels like to be sent a message over and over again that you're not okay the way you are. And they would say to me, you know, I'm paraphrasing because this over months. And the sad thing to me is I've been doing this over 20 years, and the stories have not changed.
I still have the same stories today. But they would think, "You know, Kathie, I wish my parents could have loved me and accepted me just the way I am and not try to change me." Well, that information went in one ear and kind of went down here and stayed because, again, all the voices of the professionals were bigger voices.