“We don’t have to devote hours every week to driving [our children] to therapies and classes.
We don’t have to battle
with their anxiety because we are trying to expose them constantly to things
they hate; with the belief that it will prepare them for life.
We do not have to accept the professional and social assumption that our children are faulty, and that they must be fixed or tinkered with in order to have a good quality of life.”
Ally Grace, autistic parent of three autistic children
I recently saw an interesting post on a Parents of Blind Children Facebook group, which I will paraphrase here. “My 19-month-old son receives early intervention services, and some therapies from the school. The local Commission for the Blind wants me to enrol him in their program for more therapy. Does my son really need so much therapy? He’s reaching milestones fairly well on his own. We just moved to a new state, I work full-time, and I’m pregnant-I guess that’s affecting my thought process on this.”
In the western world, families of children born with disabilities often find themselves negotiating a complex web of systems. It always starts with doctors-often too many doctors, sometimes multiple unpleasant, wallet-draining diagnostic procedures-to identify the congenital disability in the child. Then, once a disability is pronounced by the medical gatekeeper, the family is urged to sign up for “early intervention” services that may or may not be government-funded. The services vary widely depending on the disability and the locale, but usually they include “therapies” designed to correct specific deficits or “delays” in the child during critical periods of development. Therapeutic goals may be based on assessments showing what the child is lacking, with goals oriented toward ability-centric milestones like walking, speech, or “typical” social interaction. There is often an assumption (spoken or unspoken) that congenitally disabled kids will have adverse outcomes without the intervention.
In my own case, there was a private agency in my hometown where my family and I received early intervention after I was diagnosed blind at six months of age. I ended up going to preschool there, and later, to their summer camps. When I was in high school, I read the organization’s Website, where they justified the importance of their infant programs by stating that “research shows that at least 80% of what children learn in their first five years of life is learned visually.” They touted their services as being vital to compensate for all the information that blind children cannot acquire visually. At the time, I found their statistics persuasive. But then, I met a blind teacher of blind children, who suggested a different interpretation. “Perhaps 80% of what *sighted children* learn is visual and 20% is nonvisual,” she explained. “But that doesn’t mean that blind children, on their own, learn 80% less. It just means they learn 100% from nonvisual experience.”
Undoubtedly, there are children and families who benefit from state-funded early intervention. But I have long questioned whether it truly is vital for everyone, or if there could be unintended harms when therapists are unfamiliar with the specific disability condition, or if they hold negative, deficit-based attitudes about congenital disability. In the parent groups, I hear from parents who are overwhelmed by all the different professionals, schedules, and expectations. Young kids who may be similarly overwhelmed, seemingly resistant to therapy. With blindness, I hear about blind kids working with physical or occupational therapists who’ve never worked with a blind person before, and it makes me wonder how their intervention could possibly be more helpful than just engaging in ordinary play.
And then there are scientific issues. In countries where early intervention is the norm, we don’t have a non-intervention control group against which to evaluate impact. So, if a child shows a positive outcome, it is often attributed to the intervention, but if a child shows a setback, it may be attributed to the inevitable impact of the disability itself. However, it’s possible that kids would do just as well without intervention, and that the “benefits” we see are just effects of time and nature on development. Conversely, we are learning through anecdotes that some interventions, like Applied Behavior Analysis (ABA) for autism, can cause trauma. But without controlled studies, families and practitioners might conclude that signs of harm (such as increased anxiety) are just “symptoms” of autism rather than effects of the intervention.
Is there an alternative? A paradigm that celebrates congenital difference rather than minimizing it?
Back in 2010, I stumbled on this blog written by Marie about her son, Jack. Jack was born with a syndrome that affects his vision, fine motor skills, and speech. When Jack was four years old, Marie wrote about Jack’s early years:
“We began physical therapy when he was only a few months old. We added occupational therapy and speech therapy as he got older. I watched the therapists work with Jack and I tried to do what they did at home. I constantly pushed for Jack to do more and more and more. He’s a smart, resilient little boy and I knew he could do more.”
“I realized that Jack already had therapists and teachers and if we lost a therapist or teacher we could get a new one. There was one thing that I could do that noone else could. No one else could be this little guy’s Mama.”
During the summer after Jack turned four, Marie pulled him out of all “therapies” and just joined him in his play. She took him to the park, the pool, and on other outings that incorporated natural lessons. Marie reported that during that summer, Jack began talking and engaging much more with people around him. Eventually, Marie pulled Jack out of school and began following an unschooling child-led approach to his education.
Similarly, multigenerational disabled families might choose to forgo traditional “intervention” in favor of community and disability acceptance. For example, Deaf parents of Deaf children often reject “oralist” education, instead immersing their children in the Deaf community and sign language, and sending them to Deaf schools. Autistic parents of autistic kids, like the one I quoted at the top of this post, might engage a parenting process that encourages their children’s passions, their unique ways of solving problems, parallel play, and self-acceptance. Related to this is the idea that parents can be their child’s first teachers, whether they share the child’s disability or not, instead of waiting for “professionals” to step in.
I don’t think there’s one answer for every family. But, I want to see some changes in the dominant paradigm. For one, I wonder if we could establish a role for “disability navigators” to help parents bridge between the medical and the educational systems when they first suspect disability in their child. These navigators could be disabled adults, veteran parents of grown disabled children, or both. Such individuals could focus on helping the family members accept the disability, become part of the relevant local disability community, and explore all the services and supports available-instead of just shunting them to the dominant early-intervention provider in the area.
Furthermore, I believe we need to be doing ongoing research on these established early-intervention therapies. Many were established in the 1970s when cultural attitudes about disabilities were very different than they are today. At that time, a child’s acting less “disabled” was seen as a positive outcome. Today, we are beginning to recognize the importance of disability acceptance for disabled people’s long-term well-being. I want to see some data showing how various intervention practices impact children’s well-being and overall adjustment over time, not just how well the children can perform in ways that please nondisabled adults. With that information, we might be able to make informed recommendations to families that truly benefit our next generation of disabled people.