Tag Archives: down syndrome

You Don’t Have to Be Perfect

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

He Has Down Syndrome B’Gosh

I saw this great story about cute little Asher and his wonderful mother Meagan Nash. Our children with Down syndrome and other developmental issues have a place in our world, can develop beyond most peoples’ expectations and can make contributions. For most of these individuals, it’s not the government, the institutions or even society as a whole that really makes the difference. It’s mothers—mothers who assume the primary responsibility for their children, who work with their children, help them develop their potentials and who realize they need to be not only their child’s cheerleader, but their advocate. Proactive mothers and fathers make the difference—for all children.

Facundo

In previous posts I have introduced some of our children with great processing skills. I just finished a Skype evaluation and wanted to show everyone once again what great potential our children have and to encourage all of you parents and professionals to raise your expectations.

I would like to introduce you to another of our NACD kids, little Facundo from Uruguay. Facundo has Down Syndrome, but he and his family are not letting it slow him down. Facundo’s parents have been doing a great job with this terrific little guy who just turned three. As you can see from the video, Facundo is processing four pieces in a sequence better than most of his typical peers and doing it in English, which he has just begun learning.

To put this in perspective most typical children do not have this level of processing ability until they are four going on five years old. Facundo did it while hearing/processing the sequence in English—a foreign language for him. He then mentally translates each word one at a time to Spanish to locate it, then point to it, then translate the name back to English to name it, then remember the sequence in English, picks out the next word in English, translates it to Spanish, finds it—and so on and so forth—doing that whole process four times. If you’re not impressed, you should be—this is one very smart boy!

Potential has a lot to do with a vision. As parents and as professionals if we do not have a vision for our child that is high, the odds are that we are never going to help them achieve anything close to their innate potential. This is a universal truth, whether we have a typical child or a child with some issues. We need to raise the bar, believe that all of our children have fantastic potentials and work to provide them with the opportunities needed to achieve that potential.

You start with a vision.

Bob

What Develops Changes and That Which Changes Can Be Developed

I’m in LA and I just saw a great little eight-year-old boy who happens to have Down syndrome. He has a wonderful family who are doing all they can to help him in his development. He attends school and is in a special education class with kids with mild problems. He is the best reader in the class, which has everything to do with what he has been doing at home for years and nothing to do with school. If he were in college, he would evidently be a film major, because watching TV appears to be the primary activity in his school day, particularly on Fridays. Every Friday is TV day. Not that they don’t watch TV on other days, which they certainly do; but Friday is all TV. Ten children, four teachers (want to do the math and figure out how much that is costing us?), and what do they do to help these children develop? They watch TV–and not even “educational” TV. They watch movies.

Sadly, a significant chunk of the neuropsychological world and the educational world still doesn’t get that the basis of brain function is neuroplasticity, and that we can change and develop if given the opportunity. Perceive us as limited, and provide “opportunity” based on that perception, and it becomes a self-fulfilling prophecy for all of our children and us as well.

You would think that after all these years this nonsense would no longer make me angry; but if anything I just get angrier.

What develops changes, and that which changes can be developed; and that includes working memory and intelligence.

Living the Dream

I had heard about a young restaurateur who happened to have Down syndrome a few months ago, but today I was sent a link to a youtube video about this young man. Take a look:

I have imagined a “Tim’s Place” for years. A business owned by one of my grown NACD kids, a place that can take advantage of their talents, a place where they can contribute, make a difference, make a living, and spend their days doing something they can be passionate about. For a number of years I have been encouraging the parents of children with developmental issues to look toward their children’s futures and start thinking about creating a business to help take advantage of those talents, abilities, and passions. Tim is a good example. Like so many of our kids Tim obviously really likes people and defines a “people person.” I suspect that Tim also remembers people’s names very well, as so many of our kids do, and I suspect that once he has met you that you get added to his list of friends. Tim is ideally suited to be the upfront, greeting-the-customers small business owner.

I have been frustrated along with many of our families with the lack of opportunities for our young adults. I have seen families work hard to help their children develop their cognitive function, the academic abilities, social skills, and to become highly capable and then fail to find meaningful work as adults. I have even had individuals with Down syndrome get regular high school diplomas and even college degrees and still not find decent jobs, let alone jobs that they could be passionate about.

The job world is not kind to our kids. If you look at the reality of employment, you start off with the real unemployment rate, which could be pushing 20%. So what is the unemployment rate for people who are really short, have a speech impediment, have any physical problem, or who just look a bit different? If it were possible to gather these numbers they would be ugly; and add on any type of mental challenge and the reality is truly frightening. Enter the NACD Foundation “Exceptional Entrepreneurs” Project: http://www.nacdfoundation.org/entrepreneurs.php

Through the NACD Foundation I would like to bring together a volunteer team of parents, business and legal folks to help us create some templates to help our families help get businesses going for their kids. I have also wanted to build some models such as coffee shops and perhaps have the Foundation assist in raising funds to help build some of these businesses for the kids.

I’ve had a dream, and Tim’s Place: Where breakfast, lunch and HUGS are served is the realization of that dream for one deserving, lucky young man. We need to help more of our kids live this dream.