Regular Lives for Families with Children with Disabilities: Interview with Kathie Snow

Kathie Snow: So you know, in the context of generic services and natural supports, again, don't do water therapy, just go swimming in a hot tub. You know, you're going to get the same benefits and the child's going to have fun doing it, or the whole family. I mean a lot of times traditional services, like including therapy, can fracture a family. They can, I'm not going to go so far as to say tear families apart, but they… I met parents who live in rural areas that they had the, say the child with disabilities is the youngest child or the middle child or whatever, and they had to leave the other children in the family with grandma or with a neighbor or in childcare because they've got to drive 50 or 60 miles to take their child to therapy. And they're doing this three times a week and the dad has to take off early from work or whatever. And there are these enormous difficulties that arise for the entire … It doesn't just affect the child with the disability, and not just the parents. It's everybody in the family.

And so these parents, I was doing this whole talk on generic services and natural supports and providing alternatives, and this one mom she says, "Oh my gosh, Kathie," she says, we… she says, "Why are we driving our son 50 miles away for water therapy when we could all just go swimming together as a family?" It's like, yes. And now we have family togetherness and we're all working together as opposed to we're going to have therapists work on this child by manipulating his body and stuff, and the other children in the family are having to be in second place for years. And so the other thing that's important, so that's important about inclusion.

And there was an agency in our community several years ago that took early intervention and turned it on its head. That early intervention, while the services were provided in the family's home or the parents could take the child to therapy if they wanted to… And so the agency that did the services did a co-op with the YMCA. Because a lot of times services isolate families or isolate the child. If it's early childhood, it can isolate the whole family.

And so they said, they gave parents a choice, you can either have traditional therapy that we'll come to your house and do the therapy on your little baby, or you can choose to join the YMCA baby swim classes. So they did a co-op.

And so the baby swim teacher from the YMCA and the physical therapist were both in the pool, they kind of cross-trained each other. There were parents whose child didn't have a disability that they just signed up for baby swim. And the parents whose children had disabilities, they were doing it through the early intervention services, the portal, but it was for the baby swim classes. Once they're all in the water, it wasn't like, okay, now here are the babies with the disabilities and the PT, and here's the baby swim class. No, everybody was together.

You didn't know, of the two ladies, you didn't know which one was the PT and which was the baby swim class. And so here are parents and babies with and without disabilities included in the same class. The parents were getting to meet other parents, you know. All the babies were getting the same benefit. The babies with disabilities were getting a little additional benefit because it made more of a difference for them. And so there's…

People can do this in a systemic level, and that is that example. But also we, as parents and family members, we can say, we're going to look at some other options. Why shouldn't… why should a little girl with a disability have to go be pulled on and tugged and body… why doesn't she take a ballet class? She's going to make friends. Is she going to be the best ballerina? Maybe not.

My son decided he wanted to take drama classes. Benjamin's strength is in his words and language, and he was the best student, because Benjamin, children with disabilities and adults, develop compensatory skills. You get older, you do the same thing. You learn to sit closer if you can't hear as well. You learn to adapt. You learn to compensate. And so Benjamin… a lot of children learn through movement. Benjamin as a young child could not move on his own and so he learned to learn by listening. And my son, and I know a lot of other people with disabilities, the same way. My son can hear stuff in another county, and he memorizes what he hears because that's the way he learns. And so Benjamin has this incredible skill in those areas.

And so when he took drama classes, he was the best student in the class. I went to pick him up one day at the drama classes, he was 11 or 12 years old. And I heard the teacher screaming at the kids. I mean drama teachers for kids are very serious, they take their job very seriously. And this teacher was screaming. "Why can't you kids be more like Benjamin?" And I was like yes! And so we realize that our children have gifts and strengths and abilities, but they get so overlaid with all the problems and the deficits that a lot of times the only time they're able to shine is when we get them out of the system.

Because people in the system are looking, it's deficit based, and they're going to be looking at those problems. When we get our kids out in community activities, then we see what their strengths and their gifts are. And we focus on the similarities, that my son, and this is true for any child with a disability or any adult, when my son was six years old, he was more like other six-year-old children than different. When he was 10, he was more like other 10-year-old boys than different. When he's 26 now, he's more like 26-year-old young men than different.

And the other aspect about generic services and natural supports is that we have to, we have to develop those in our own lives. Because the service system… I mean I started talking about this back in 1990s when we had the Contract with America, I mean they were cutting services and cutting government and shutting the government down. And we see that again today. I mean our country's in this big throes of all our economic mess and we're going to cut services and cut funding and stuff.

If we have, if we've developed and just looked in our own backyards, what is in, what's in our communities that we can access? Again, the YMCA or the health club or the library. If a child is not learning in school, why aren't we enrolling our children in library programs or literacy programs? If the school is doing a lousy job of helping our child learn to read, what… we're going to hold our kids hostage to what educators are doing or not doing? Let's enroll our children in library activities, or park and rec activities to meet our children's needs.

But whenever services get cut, then too many families of kids with disabilities or adults, it's like the sky is falling, the sky is falling, Chicken Little. What are we going to do? They're going to cut services. If we put natural supports and generic services in our lives all the time, if we start right now and say, what is in our community, then whenever they cut services, we're going to be fine because we're going to say, you know what? They're going to cut therapy, that's okay because I've got my child in ballet or I've got my child in karate or I've got my child in a park and rec class.

So that our children's needs and the needs of people with disabilities can be met if we look at the natural supports and generic services in our community. That's going to ensure their inclusion. It's also going to make sure then when services do get cut, and they will, you know, it's going to get worse before it gets better, then we're still okay.

And the final question that I like to ask people is, especially parents and family members, what would we do if there was no system? Would we really let our kids go without? No. We would find a way to get what they needed, one way or another. And so why don't we do that now instead of waiting until things fall apart and we're doing Chicken Little.