“You don’t have to be perfect.”
This insightful and profound statement is coming from this soon-to-be eighteen-year-old lovely, trilingual, beautiful and wonderful young lady who just happens to have Trisomy 21 (Down syndrome)—Arianna Dinwoodie-Palmes.
Arianna lives in Barcelona, Spain. She reads and speaks fluent Catalan, Spanish and English. She attends a school where classes are taught in Catalan and Spanish. She learned English from her dad, who is from the United States. She takes a theater class once a week with “typical” kids, personally takes care of enrolling in the course every three months and pays for all her classes. She also does gymnastics with kids who have some learning challenges. She lives in an inclusive world. She navigates the very big, chaotic city of Barcelona on her own, taking public transportation to and from school while meeting with friends for movies, lunch and other social events. She loves Zumba, singing and doing research projects on the Internet and is very concerned about ecology and pollution. She is finishing high school this year and is looking forward to trade school next year, focusing on administration, sales and customer service. She is a happy, caring, typical teenager, who also happens to have Trisomy 21 (Down syndrome).
The video (see above) was Arianna’s idea and she wrote her own scripts. These are her unedited thoughts and words—in three languages! Arianna’s level of function makes her normal. Arianna’s insight, personality, smile and overall goodness make her exceptional—exceptionally wonderful!
“You don’t have to be perfect.”
Such a simple, obvious, but profound statement, particularly when viewed in light of the still staggering numbers of fetuses identified as having Down syndrome that are aborted. Recent research states that in the U.S. there is a termination rate of 67% of fetuses following a prenatal diagnosis of DS. None of us are, none us will ever be and none of us need to be perfect.
Somehow our enlightened, educated and politically-correct society has created and perpetuated the myth that some of us are not miracles of creation, that we do not have limitless potential and thus are condemned by myopic prejudice to be deprived of the right to live; or are often condemned by perceptions of limited potential and given limited “appropriate” opportunities that are commensurate with the perceptions.
Arianna is one of our NACD kids. She has been on one of our TDI Targeted Neurodevelopmental Intervention Programs since she was a year old. She and thousands of other NACD kids are reflections of what can be, given the opportunity. Defining opportunity as having dedicated proactive parents who, when given the tools and the vision, can truly provide their child with an opportunity. We all need to be perceived as having unlimited potential and giving the opportunity to achieve, but we also need to realize that, “You don’t need to be perfect.”
After all, isn’t being less than perfect what defines us as being human?
—Bob
My trip started off with Ally. Ally is one big giant perpetual smile. She smiles as she comes in the door, she smiles as I speak with her parents about what a “turkey” she can be, she smiles after she shows me her walking and she smiles and waves goodbye—“See ya Bob.” Ally is twelve and is now, after lots and lots of work, starting to walk on her own. She is in a typical classroom and doing well academically. She still needs large print, but reads well. She talks up a storm and is generally a delight, although she loves to torment her mom and dad. I first saw Ally when she was 10 months old. Ally was shaken by her babysitter when she was four and half months old and severely brain damaged. By the time I saw her, just months after her injury, she had shunts in both sides of her brain to relieve the pressure, had suffered retinal hemorrhages and essentially had no vision, was diagnosed with infantile spasms (severe seizures), was on two different seizure medications and was recovering from breaks to both legs and her left arm. Devastating, but Ally’s parents are exceptional folks and have worked wonders with her. Every time I see Ally I remember where she was; and although she has many pieces yet to be put together, she is a trooper, doing great and smiling!
St. Louis started with Abby, a seven-year-old ball of fire. She runs in the room with her mom and throws her arms around me and gives me a big smack on the cheek. Abby has Down syndrome, but it surely isn’t slowing her down. She’s in a typical 2nd grade class—academically and socially right there with her peers. But I’d be willing to bet that Abby generates more smiles and warms more hearts per minute than 99.9% of the kids on the planet. Typically, when she leaves her evals she turns, waves, throws me a kiss and impishly says, “Bye, Bobby.” More smiles!
I chose this statement to be the title of my blog as a representation of my strong belief that, as a scientist, every statement or opinion I make is stated as, or assumed to be, preceded or qualified by the simple, but incredibly important modifier—“It Appears That”. As such, I am communicating that based on the information I have at this moment, it appears that such-and-such is accurate and I will act on that assumption until additional welcomed information indicates otherwise.