27 June, 2011

The hope of something better...

My wife sent me this link sometime back that is written by Kathy Ireland. I suggest you read it as it is a heart-felt message that conveys the pain and heart-break that many parents and family feel when a child with Down syndrome, or other such challenges is born. I'll wait while you do that...


Okay, I hope you digested that. Because while I have known the pain of hearing the news, "Samuel likely has Down syndrome", I have known the joy of Samuel having Down syndrome. My brother recently asked me if it was hard raising Samuel. I said that yes, it was. What has been hard is the constant challenge the school system has been. Having a lawyer in a meeting to help protect your child's rights is not what any parent expects to have to do. Yet, that has been my experience.

Everyday my son greets me in the morning. We share a hug. We breathe deep two or three times and we are in sync with each other. We begin our day and meet the world head on. Perhaps it is his strength that helps me and Rowena meet each day and the challenges that day brings. Sometimes it's just getting his lunch to him because he forgot to take it to school. Other times, it's dealing with a meltdown over a disagreement with a friend. Either way, we attack each day; above all, we love each other. That is the shield I carry that perhaps folks miss when we meet on the field of battle.

Battle you say? Really? You talk about your son and the system in a context of war? Yes. That has been our reality at times. Since I never expect that, I arm for it every day, because I never know from which angle a new challenge will arise for our son.

I had a biology professor at De Anza College who said, about verbatim, "If you have a test that shows your baby has Down syndrome, you abort that child." Take a moment to let that sink in...

I of course challenged her and was aghast that she could say such a thing. I thought to write letters to the Dean, to write letters to congress. I was stunned. When I challenged her on this as to how she could say such a thing. Her response? "Because society does not treat these people well." It was very matter of fact. In the moment, I thought of my family and friends, and community that knows and loves Samuel. That had not been my experience, in that moment... Anger will blind you when it hits and knowing that, having a shield will help in such cases.

Instead of writing letters or being furious, I put my energy into an extra credit project for that class to show the younger students in my class, to help them understand Down syndrome and to show that people with Down syndrome are valued members of the community.

After all these years, I have come to realize that my professor was right. Not about aborting the fetus, but about society. For this, I carry a shield.

Back to the article by Kathy Ireland... She argues for more funding to identify a "cure" for DS. Let's be clear, no process, no drug, no surgery now or in the foreseeable future will "cure" Polly, Samuel, or others with DS. Every cell in his body has extra chromosomal material. It does not, will not go away. Any research will only help identify the diagnosis sooner and give parents options to do something different (abort, prepare, or put up for adoption). If there is a medical procedure that can catch this and reverse it in utero, then that may make a difference. Check your science, the procedure would need to happen pre-conception. For the families that could afford that.

What then for Kathy's niece Polly? Or for Samuel? If tomorrow a "cure" were found, my son and Polly will be on an iceberg, adrift in a dwindling community. To be true, they already are as pre-natal tests allow parents to make these choices now.

To Ms. Ireland I say, you have it all wrong. I mean, sure, go ahead, fund research to keep more kids from being born with DS. However, I hope that from here, Ms. Ireland, you attend all of Polly's IEP's. I hope you go to the hospital for every event that Polly encounters. I hope that you help Polly understand puberty and sex. I hope Ms. Ireland, that you are there when Polly's parents look to have Polly conserved. I wish you could be there when Polly is taken advantage of in the community. I hope Ms. Ireland that you help education in schools for the other kids, so that they treat Polly and her peers with respect and grace. These things, Ms. Ireland, will make a difference to Polly now. These things will make a difference in society.

My point is, funding is being cut everywhere. Samuel grew up in a time of relatively good funding for the schools. We experienced grief in that time. I don't want to know what parents bringing kids into the public school system are doing today. I can't imagine.

The bottom line, Ms. Ireland, the tragic shortfall in Down syndrome research isn't in finding a "cure", it's in finding a cure for society. Ms. Ireland, put your notable clout towards helping Polly and the other kids and adults with DS be successful in the world. Do what you can to help advocate for better policy so that our kids and our adults with DS have programs where they can be successful. Above all, put your clout to making sure that my biology professor is wrong. Let's work to make society a more accepting place for Polly and Samuel. I'd love to give up my shield.