An Uncomfortable Necessity

Lucas at 29 months

Fifty years ago people with Down Syndrome were labeled and put into institutions, but over time there was a movement to bring awareness and show the amazing potential of these people to society, in a concept, the word "special." With all respect and appreciation for the foundation laid by these pioneers and the dedication of those who pushed down walls and forced society to open their eyes, I submit it is time to move beyond the word "special" and forge the next chapter in history for our children.

It is no different than the old ugly labels, except it gives society a cleansed word, a compassionate word. My son does not need pity or compassion, he does not need to be recognized as any more "special" than his brothers and peers. He needs opportunity. An equal one. The message we send our children when we allow them to submerge into a world of special schools, special classes, and special opportunities before we give them the chance to succeed or fail on their own merits isn't that they are special. We are telling them that they can only ever hope to fit in other "special" worlds and worse yet, we their parents expect no more.

A wonderful local ski club generously offered a local T21 group special ski instructions for their children. A very genuine and thoughtful gift, it was very well received by the group and left me wondering why. When Sean takes our older sons to their ski lessons, what lesson does it teach while the "regular" kids are all geared up and ready to go standing at the bottom of the hill waiting for the "special" class to end. 

There is no question that with things like lower muscle tone and potentially decreased motor skills there would be a need for one on one instruction, as a therapist I get that. Why then, would the club not simply allow the "special" children to ski with the regular ski group and add the extra staff that was needed to run the group anyway? We have come so far as a society, yet when it comes to our children we do not question the fact that separate is not equal. Take away the word "special" and insert any other group separated out based on ability or appearance and we would be crossing a line called discrimination.

I respectfully submit that the lure of "special groups" is not to give our children a secure place, it is to wrap us, their parents, in the warm blanket of acceptance, where no one will judge our children - or us. We feel kinship with those who are in our "group" and we even feel superior to those without a "special" child because our goals are loftier. We do not have to acknowledge the differences between children when we are surrounded by other special families. I thought differences were good. I thought different people with different abilities and different gifts and contributions are what make life rich. 

One hundred years ago no one would have been able to conceive of a day when people with T21 who couldn't even perform basic self care tasks, would go to school, compete in sports and have jobs, even in the special realm, yet they have for 40 years. I think it would be foolish to think there is no more to be achieved, that these intelligent and charming babies can not continue their path of achievement if we, the ones in charge of their growth and development expect it and provide opportunity.

 If we reject the notion that all behavior issues are due to the T21 (ask any mother of a 2 or 3 year old!) and actually teach appropriate behavior the way we do to our other children, to reject the offer of an classroom aide when our child enters preschool and give him a chance to manage his own day, to reject the special art and music classes and submerge our children in the actual world they will have to live in as adults. A funny thing happens, when we expect it - it happens. 

Some would point out that not all children with T21 are capable of such endeavors, to that I would gently point out that there are many without any diagnosis who can not either, that doesn't mean on the day of their birth we should resign ourselves to lowered expectations. That changes the way we teach and raise our children.

On this very day, Karen Gaffney who never sat in a special ed class, went to private school, graduated from the oldest all girls academy in Portland Oregon, went to college and formed her own self named foundation, is swimming the length of Lake Tahoe for charity. In researching her story I found that the driving force her entire life was her parents, who refused to lower their standards and continually found ways to help Karen achieve. Isn't that what all parents do? There is nothing special about it.