DS Awareness Month--Post #2

Susan Rose

In 1954 there were no prenatal tests, no ultrasound markers, not even the diagnostic term "Down syndrome". Susan Rose's parents, Emery and Lydia, and her four older siblings (ages 14-21) had the same expectations for her that any family had for their newborn child. This was undoubtedly to Susan's advantage. When Susan didn't start to crawl, or walk, or talk quite as early as most babies her siblings started asking, "Do you think something's wrong with her?" Her mother Lydia always said, "She's fine, she's just a little slow."

Doctors eventually diagnosed Susan as "a mongoloid", then later identified her as having "Down syndrome" and through it all told her mother that "the child is most certainly mentally retarded". Lydia scoffed, said the doctors didn't know what they were talking about, and insisted that, "Susan is fine, she's just a little slow."

Susan learned to walk and talk. Lydia put her in school where she learned to read and write, add and subract. Sometime in the mid 1960s the "experts" won and Susan joined the special education classes and was steered into being trained for manual labor. She was never satisfied with the work, and always preferred the company and conversation of the staff to that of her fellow classmates. And Lydia continued to contend that she was "just a little slow".

After the deaths of her parents, Susan went to live in a group home. Today she enjoys sharing her home with three other women, including her best friend Joan. The two are die hard Elvis fans who love to watch old movies together. She spends her days in a senior day program for older disabled adults. She loves to visit museums, attend concerts, and participate in cooking and art classes. She tells me that she is finding out she has natural artistic ability and is working on a painting. Her best friends are still the staff and program directors.

The most difficult chapter in Susan's life came while she grieved the death of her parents. Without her mother to advocate for her being "just a little slow" her depression and grief were misunderstood to be a part of her handicap, as if someone with developmental disabilities also had emotional disabilities and was not expected to deal with a personal loss like anyone else. Susan was put in a day facility for severely handicapped individuals that offered more of an asylum atmosphere than anything. She began to exhibit agressive and defiant behaviors that led to psychiatric evaluations and medications. When she was finally removed from the facility her deviant behavior stopped, completely.

I know Susan better as "Aunt Susie". I am her niece and I am only eight years her junior. I remember early on looking up to her, later associating with her as a peer, and eventually (when I learned that her aging siblings were unable to assist her) becoming a guardian. Susie loves her family above anything and anyone. She knows the month, day, and year of everyone's birthdays and anniversaries (4 siblings, 12 nieces and nephews, plus aunt, uncles, and cousins). She keeps up with the great nieces and nephews working to memorize the new generation of names and dates, and doing a fair job of it.

Susie has defied all expectations. Had she been diagnosed with Down syndrome at birth she would not have been expected to reach adulthood. When she was 26 she had passed her then life expectancy. And at 54 she is at the peak age of life expectancy now for someone with ds. Believe it or not, there are still physicians today who tell parents that their child with Down syndrome will never walk, talk, read, write, or live a meaningful life. Susie has done all of those things.

So, thanks to my Grandma Lydia, when my son Gabe was born with Down syndrome two and half years ago I was able to say with confidence, "He's going to be fine, just a little slow."