Regular Lives for Families with Children with Disabilities
Interview with Kathie Snow
Produced by Minnesota Governor's Council on Developmental Disabilities
"Enough Therapy, I Quit." Getting Out of the Disability World.
Kathie Snow: Well, time passes. We move from Texas to Colorado. My son was still getting therapy. I mean I listened to the adults with disabilities but those other voices were bigger, more powerful because they're the professionals. They've got all those letters behind their names and all that kind of stuff. And by now my son is six and he's in the first grade in a wonderfully inclusive elementary school. This was way back in the early '90s and so we know that as far as inclusive education, we know it can be done. You've just got to do it.
And all the little kids, you know, I'm driving my kids home. I've got the carpool and my son's sitting over here next to me in his booster seat and my daughter and the other kids in the backseat. And all the little kids are talking in the car. When I get home I'm going to go play Nintendo.
Or when I get home, my mom's taking me to ballet class or whatever. And they said, "Benjamin, what are you going to do?" And he looked over at me and said, "Mommy, what day is it?" And if I said, Tuesday or Thursday, he'd say, "I've got to go to therapy. Mommy I don't want to go to therapy." I know, but you got to go. Right? I mean, mother has spoken. This is your life. You're a child with a disability. Therapy is your life.
And after about six weeks of this, he just got more upset every Tuesday and Thursday. And finally one day, just tears streaming down his face and he's just crying so hard he can't hardly talk and he just was screaming. And he says, "Mommy," he says, "I don't want to go to therapy anymore." He says, "I've been going all my life. I just want to go home after school like the other kids." He says, "Going to therapy doesn't make me feel like a regular person." Because he felt like a regular person at home, and he felt like a regular person at school. And he was playing T-ball, and he was the only kid with a disability on the T-ball team, and it didn't matter. It wasn't a big deal. He was in Cub Scouts. So he felt like a regular person everywhere but at therapy.
And that was the day that we got out of what I call Disability World. I mean Disability World is a world of special and of services and of segregation. And Benjamin did not go to therapy ever again. Some people think, "Oh, she's bashing therapists." No, we need therapists. Therapists can help us to help our kids do what they want to do. But we need to use them as consultants so that we are not sending our children... Just like we're therapy moms, we have therapy kids... I realized my son spent more of his time in therapy than doing anything else. And that at age six he already knew that. And I thought how incredibly sad. And my son, that's how he saw his entire life up until age six. And it was like... I mean that's really eye opening and powerful.
So we took what we learned from therapist and incorporated them into beneficial activities throughout Benjamin's day. And not in the form of home programs because Benjamin said to me, "Mommy, no more home programs either." Because kids don't want to see their parents as therapists. They want them to be mom and dad. And so we just, you know, instead of doing water therapy, just get in the hot tub and play, you know? Or the whole family can go swimming.
What so many therapies do is they take a child out of his or her natural environment and we put them in this artificial environment where, again, we're working on them. And I'm not... People equate that, well, you're saying don't get medical treatment. No, of course, our kid would have to get medical treatment. You've got to get a shot in the arm. It's going to make the baby cry and you have to do that.
But those kinds of events are not the same as this routine, ongoing, you know, therapy three times a week. And that we set goals for children that they're never going to be able to accomplish. I mean, we need to dream for our kids, but the dream is for them to live a wonderful life. And what adults with disabilities taught me years ago that you don't have to walk to have a good life, but you might need a power wheelchair. You don't need to talk to have a good life, but you might need a communication system or device of some kind. You don't need to do all these functional things.
And so most therapies are focused on essentially trying to force a child to achieve functional skills. And I learned a long time ago to say, you know, if he could, he would. And if Benjamin could do it, he would do it. No amount of therapy is going to make him do something that his body cannot do. And even if he wants to do it, you know, cerebral palsy is a brain injury at birth. We can't make that go away, okay?
I mean, it's like, sort of like having a stroke and some kids are born with Down syndrome and some kids are born with autism. And, you know, if their bodies are wired differently or their brains are wired differently, we can't... You know, working on somebody's this, that, and the other, is not going to change that. and I think that we cannot allow our children to grow up feeling that they are less than.
And I realized years ago that we are very good - and I say we collectively – we, as parents, we as therapists, we as educators, you know, whatever kind of interventions we're doing – we're very good at being mechanics, that we can, we're very good at working on people's bodies and brains and in the process we can cause great harm to their hearts and minds. And I think that we need to focus more on their hearts and minds. That they know that we love them just the way they are. That they are perfect just the way they are. Just like I'm perfect just the way I am now. I've got gray hair now and I've this and I've got wrinkles.
And if somebody came and said, "Kathie, you know, we need to put you into therapy or we need to do these treatments on you so that you'll..." I mean I would be offended and say, "Get out of here." We don't give children the opportunity to do that.
The other big thing about therapy is that when I was in the Partners program and was meeting 35-year-olds and 50-year-olds or different ages, different disabilities, Down syndrome, cerebral palsy, whatever, and they're telling me that they received therapy all their lives. At that time, not only should I... I mean I should have listened to them right then and made some changes in my son's life, but it took me a while to get my head screwed on straight.
But I did start saying, "Wait a minute." I mean because as parents, when somebody tells us give your child therapy two days a week. And then we'd say if two days a week is good, more is better, so we want more. And nobody discourages us from that. Everybody, oh yeah, well, you want to do more? Yeah, great. You'll be a great parent. But I started realizing here.... We do that thinking well this has got to be good for our kids. And we have this image in the back of our heads, this idea. And nobody tells us this overtly.
But we have this idea that if – and a lot of parents don't want to admit this, but it's like if we really are honest, we will admit it – we have this idea if you give your child enough therapy throughout their young lives, that at some point in the magical future, they won't have a disability anymore. I mean, if we didn't believe that, then why would we do this? I mean, why would we subject our children? Why would we subject ourselves, our entire families to these regimens and rigorous therapy? And sometimes it's ABA 40 hour week therapy and it changes a whole family.
And so when I was in the Partners program, and I met these 35, 45, 50-year-olds with developmental disabilities and they told me they got therapy from the time they were born or whatever until they were 25 years old or something, and you look at them and here, well, now they're 35 and they still have cerebral palsy or they still have Down syndrome. They still have artic problems or whatever. And so at some point we have to stop and question, you know, do these so-called therapies work? I mean, what is the purpose of them?