Lives Lived.: How far we have come with Down Syndrome in 50 years

As I share this story I feel thankful. Thankful that my son was born today and not 50 years ago. The advancements made on the medical and educational fronts are incredible. I read this story and thought about all our children today and how lucky they are. We need to continue to fight for them. This fight isn't over by far. We need to make everyone aware of how important early education and early intervention is to our children. And we need to have their voices heard. So that our children excel further then we ever thought possible!!! Here's the story:

It was in the Pittsburgh Post Gazette

Lives Lived: The lesson of Lewis Silverstein
Life is love
Tuesday, May 05, 2009
By Mike Silverstein

My brother Lewis died last week. He was 52.
There were many things in this world that made him happy. He loved to watch Studio Wrestling, and entertained the family with his impersonation of ring announcer Johnny Francona. Bruno Sammartino was his favorite wrestler. Like many of our neighbors in Morningside, he also liked to dress up in black and gold and cheer for the Steelers, the Pirates and the Penguins. He was barely 4 feet tall.
Lewis loved music, and Christmas music most of all. For him, every day was Christmas. And any day was the right day to sing "Hark! The Herald Angels Sing."
Lewis was born with Down syndrome in 1957, and a blood incompatibility at birth required two transfusions in his first 72 hours. So tenuous was his grip on life that he did not regain his birth weight of 5 pounds, 12 ounces, until just after his first birthday. During that first year, Mom stayed up nearly every night to try to force an extra half-ounce of formula into him. She simply refused to allow him to die.
Ever so slowly, he made progress. He stood up at age 3. He took his first steps at age 6. There were few resources for families with Down children back then, and no public school facilities.
Lewis attended a preschool sponsored by Rodef Shalom Temple for a year, and then St. Anthony's School for Exceptional Children in Oakmont for more than 10 years. The love, the skill and the dedication of the nuns at St. Anthony's helped him blossom. St. Anthony's is where he developed his fondness for Christmas carols.
Lewis learned the alphabet and his numbers, but he never was able to read and write. But he helped with cooking and cleaning dishes, folded up his clothes and stored them neatly. And his table manners and personal cleanliness habits often exceeded those of his brother.
In 1980, Dad died and Mom's health began to decline. She was able to place Lewis in a group home, the Royer Center, on Negley Avenue. Even though he missed Mom and Dad, Lewis thrived at Royer. He adored his counselors, participated in all the group activities, and helped with the chores. And for more than two decades, his beloved Aunt Frances would visit him every Saturday to take him to Eat'n Park.
His order never changed, and he recited it carefully each week: Cole slaw. Spaghetti with meat sauce. Garlic bread. Iced tea. And a chocolate ice cream sundae. There always seemed to be a table ready, and for him, lunch with Aunt Fan was always the best meal ever.
Aunt Fan began to slow down by age 90 and was no longer able to take Lewis to Eat'n Park. So when I would travel to Pittsburgh every few weeks, he would insist we go to Eat'n Park and get food to take to her. And so we did, until she died at age 94.
Over the past five years, Lewis began showing signs of Alzheimer's disease. This, I have learned, is not uncommon among those with Down syndrome, even in their 40s. When he could no longer remember what the fire alarm meant, he could no longer safely live at Royer Center.
For the past year, Lewis lived at Canterbury Place in Lawrenceville, in a nursing facility among residents sometimes 40 years older. Once again, he was treated with care, showered in affection, and he was happy.
Late last month, I received a call that he wasn't eating and just wasn't himself. He was taken to the hospital, where they discovered a blood clot on his brain. Surgeons were able to clear it out, but the little guy simply ran out of strength. He died of respiratory failure.
In my grief, I want to reach out and thank so many people.
First of all, thanks to the people of Pittsburgh, who have always cared about children and the least among us. Politicians in my adopted city of Washington, D.C., often talk about the sanctity and dignity of life. But in Pittsburgh, his teachers, the nuns, his counselors, his doctors and nurses, and the people who touched Lewis' life in so many ways made real those ideals that politicians only preach.
And permit me to share the great lesson that my brother helped teach me. It is about the "power of the powerless." It is something that an essayist named Christopher de Vinck wrote a book about, and Fred Rogers wrote the introduction. In Lewis' life, I saw it firsthand.
For more than five decades, my little brother exercised a great and wonderful power over me and my family. He selected people into our lives. Those who found it difficult, uncomfortable or unrewarding to deal with him moved on. But those who had time for us or those who found a place in their hearts for him brought gentleness and spirituality into our lives. His neighborhood became our neighborhood, and simple joys and kindnesses became more precious than great wealth and those things it might purchase.
I miss him terribly already, but I thank God I was able to share 52 years with the little fella.