Call to Action

As with every other part of our journey, there is a constant pull of conventional ideas. I was approached by a friend of mine who wanted to know if I was signing Lucas up for a popular program in the area for teaching ice skating to children with special needs, apparently she is an instructor. I said, without thinking, that I had already made plans for him to do the community learn to skate program my other boys had done. The conversation ended shortly thereafter, but it left me thinking, did she see something in Lucas that would make him inappropriate for the community class? He has the proper gross motor skills, attention span and energy of a typical three and a half year old, nothing visibly would rule him out. As far as his ability to understand, I truly think it is far better than my other boys at his age, just because we have focused on it for so long. Then suddenly I figured it out.

"Down Syndrome" is nothing more than a label, an inaccurate, segregating, discriminating, demeaning label with no footing in science, biology or medicine. Because the existence of an extra chromosome produced some assumed eventualities over 100 years ago, a doctor (who thought the condition was a result of incomplete development in utero and therefore resulted in a "mongoloid" child - remember those from mongolia were not well regarded at the turn of the century), he decided to take these bright children and give them a syndrome named after himself who admittedly knew nothing about it. Now, some 115 years later, we allow this label to define our children. This outdated label is just as destructive as any racial slur or derogatory ethnic name, yet it is so common everyone thinks it is an actual diagnosis.

The fact that my son understands and does things far beyond his chronological age is lost on this friend of mine who only knows the label. If this is true at three and a half, what will it be at 13? 23? 33? I can not wait - and I suspect you can not either - to see what unfolds. Action must be taken and a new awareness spread. Since I began this journey I have met a small number of parents around the world who are having giant success intervening before delay occurs. There is a movement, and I am pretty sure anyone who reads this is part of it - that is how we've found each other. We have witnessed the uprising of the parents of children with autism, who time and time again fought traditional thought with proof they had made their children well. I'm sure that community of parents will tell you their methods are still far from commonly accepted, but together their voices are being heard, and we have all had our perceptions changed of children with autism because of that message.

At the risk of drawing ire from the very people I wish to inspire, may I suggest it is time to stop propping our children up as the poster kids for disability? When a company wishes to sell a class, or a book, or an item to parents of kids with special needs, do they typically choose a child with autism? Of course not, because children with autism look like every other child. Even children with physical disabilities are not always chosen first because most people understand that a physical disability does not mean the child has an intellectual one as well. But they love our children. Our children look special, and when the public sees their features on a product, they know exactly who it is for, and more importantly, who it is not for.

I have a better word for that, it's called discrimination. It is no different that segregating any group of people based on stereotype. I'm tired of hearing the "but kids with Down Syndrome are_____, "fill in the blank; special, sweet, friendly, loving, stubborn, delayed, on and on. When we as parents allow our kids to be propped up as the symbol of disability, the symbol of those who can never hope to compete in any arena other than a "special" one, we make it okay. It is not okay. We don't get up at the crack of dawn, drain our brains, bodies, souls, and bank accounts because we think it's okay. My child will succeed in the same world as his brothers, he will not just "get along" he will lead.

That is why I am writing this - to you, other parents who feel the successes and the intuition that the past 115 years got it wrong and we are positioned at precisely the correct time to make it right. Our children can achieve unbelievable things and if they enter a world where they are prejudged, we've done nothing.

How can we be heard? We educate by example everyday, but how do we organize our voices? As stretched as my husband and I are with all we've committed to Lucas and our other boys, it is becoming apparent that it wont be enough. It is not enough for Lucas to be included, he must be seen as an equal. The parents in the autism awareness campaigns had one huge advantage, they banded together. Please pass this to any groups you may be a part of, feel free to contact me directly or via the comments at the end of the blog with ideas or opportunities. The time is now.

I can't help but think about all the stories this time of year about a young man with T21 who was crowned prom king (Do they publish stories of all prom kings?) or dragged around filthy towels for the basketball team all four years of high school, and then at the final game of the season when the team is up by 30 points, they put him in for one play - after they arranged with the other team that they would not oppose him. My heart breaks for that young man, for his parents and for my son. Worse yet, the students who organized the play did it genuinely and charitably. Charity is for those who need it. Our children will not.

Where do we go from here?