Tag Archives: down syndrome

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.

Just the Way You Are

I just received this wonderful video today and wanted to share it. Steve Pankratz, an NACD dad in Bulgaria, unbeknownst to me wrote and performed this song about his son, Jaden, for an NACD Bulgarian Down Syndrome Conference last year. Steve and his wife, Tanja, organized this conference and made it possible for our staff to have the opportunity to address a large group of parents and professionals in Bulgaria over Skype. Steve and Tanja have really been helping to educate folks in Bulgaria about the potential of our children with Down Syndrome.

The interest and need in their part of the world is such that I’m delighted to be going over to Bucharest this May to see our great dedicated families from Romania, Bulgaria, and throughout the region. NACD has been very well received there, and we are seeing some really great changes with the kids. Great parents, like Steve and Tanja, who love and believe in the potential of their children are the same everywhere, and all of us at NACD feel very privledged and honored to be able to give them some help and guidance in their journey. Thanks to the Pankratz family for sharing this beautifully personal video with all of us.