They are able because they think they are able. - Virgil
There is a tendency in the “special needs” community to treat our children as if they are.... special. I’ve eschewed this stance from the beginning. It wasn’t done consciously, at least not at first. I was already a parent when Juliana came along. I try to be very intentional in my parenting and I am idealistic regarding how I want my children to be raised emotionally, intellectually and spiritually. None of that changes for any child of mine, regardless of their diagnosis. We have always treated Juliana exactly the same way that we have treated Calvin.
I have often wondered if special needs kids don’t develop certain skills simply because they have not been given the opportunity to develop those skills. Recently I read a story of a teenager with Down syndrome who liked to mow the lawn. His mother wanted to know if she should have him wear protective eyewear while he mowed.
Does anyone wear protective eyewear when mowing the grass? I never have and I’ve never seen anyone else do it, either. I have seen similar stories of parents who are afraid to let their teenager boil water. This type of coddling is not for me. I would much rather presume capability and then watch as my child lives up to their potential.
I was delighted to see this thought expounded upon by Kathie Snow in her excellent book Disability is Natural:
Many parents and professionals still do not look at children with disabilities and presume competence. We don’t expect them to be responsible. It’s almost as if we think it’s all right to keep children dependent, for parents and other adults to control their lives; we’ll wait until they’re adults to worry about their capacity for self-determination. But we can’t wait! And we must not make our children wait! ... Being self-determined is more important than any other functional ability.Is it possible to be successful without also being self-determined? I think not.
Snow actually takes self-determination a step further than I expected. A self-determined child must come from a self-determined family. I hope that someday my account of Juliana can be summarized as such:
When we’re self-determined, we don’t automatically accept the conventional wisdom about our children, nor do we make decisions based solely on the expertise of others.I’ve spent the last 18 months learning all the special needs lingo and reading as many accounts as I’ve come across. There is rampant reliance on “the system,” whether that be the medical system, the medicare system, the early intervention system, or any system outside of the community that parents have traditionally relied on for advice. There was a brief time when I did put my faith in this system: faith in doctors to help my baby stop screaming in pain, faith in therapists to help her progress. But before too long I remembered that I am the person who knows my child the best. I am the one who has a vested interest in her outcome. I am the one who lies awake at night wondering what I should do next. I am not on a payroll, this is my life 24/7. We can certainly utilize elements of various systems but I believe we lose in the long run if the service system begins to define our family and subsequently destroys our autonomy.
I utilize “the system” as one of many tools in my toolbox. Juliana is in Early Intervention. She has multiple doctors. She is also on Medicaid. We seem very much like “system” people. But I don’t always follow the advice of doctors, and most of my greatest successes have been as a direct result of disregarding their advice. If a therapist says something that I disagree with, I don’t assume that they are right and I am wrong. I don't ask doctors or therapists for their opinion on how I should parent. When Juliana ages out of Early Intervention therapy and we’re told that it’s time to send her to a special needs preschool, we will decline.
We are in control of our lives, not the system. We decide what’s important. We decide what’s normal. We prioritize for our family. Long ago I made a vow that we would not structure our entire lives around therapy schedules. Admittedly, we’re still not there. But at the same time we have not taken on a therapy load that is impossible to handle.
If our children have grown up in families that are dependent on the system, they’ll learn that as adults, they should depend on the system. Don’t underestimate the importance of this: it’s not just about being on SSI for the rest of their lives, it’s about leading segregated lives. Lives in sheltered workshops, institutions, activity centers, etc. I very much want both my children to lead lives that are integrated with regular society, lives with unlimited opportunity, lives that contain interactions with all sorts of people and lives that are self-directed. The goal of inclusion is one (of several) reasons why a preschool specifically for special needs kids will not be on my agenda.
While writing this I have wondered if I’ve come across as overly idealistic, particularly to those parents who have children much older than mine. Maybe so. But one thing that I’ve learned from my friends on the Kabuki syndrome group is that our kids have so much potential; potential that is overlooked by doctors, therapists and everyone in the ‘system.’ My fellow parents have been told that their child will never walk, never talk, never do this or that. Of course, the child does go on do these things - and much more. I will always treat Juliana normally, and I will always have high expectations for her and her potential, despite the secret fears that linger in my heart of hearts. High expectations set a course, and that alone is reason enough to be idealistic.