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.

What Do Behavior Development, Social Skills and Maturity All Have in Common?

NACD Blog Behavior, Social, Maturity & Splinter SkillsA great deal of time and effort is spent attempting to teach children, particularly children with developmental issues, skills that will assist in their daily life. Many of these attempts are actually attempts to teach splinter skills. Splinter skills are specific skills that do not generalize because they are not developmentally based. To generalize means that something taught specifically can be used and incorporated throughout overall function. If something cannot be generalized, it has very limited value and more often than not fades away. Whenever possible we want to dedicate the majority of our time and efforts to building the neurological foundation.

As children advance in their global development and function, they will generally acquire a vast array of associated skills commensurate with the advanced global/cognitive function. If we look at children from birth to five, where the development is typically the fastest, we see that the children over the course of each year acquire a broad range of new abilities that cover the full range of human function. These include the development of receptive and expressive language, gross and fine motor functions and skills, along with social interaction. In typical development, we essentially start with an infant who cannot control any part of their body and cannot interpret anything they see, hear, feel, smell or taste. In five short years, this same individual can run, jump, climb, take care of most and possibly all of their personal needs, carry on a conversation and interact socially. They have knowledge of everything from the name of an insect to the quarterback for the Rams.

Most of what the typical child has learned they were not specifically taught—they have learned what they have simply because they could. As their brains have developed—as their processing, short-term memory, working memory, and executive function have improved—their brains have simply been able to absorb more, understand more and do more.

If we are intelligently and wisely teaching a child or a young adult, whether they are two or twenty-two, we are teaching them things that are commensurate with their global neurological function or maturity. If we are attempting to teach specific skills that are not appropriate for their global function, we are actually attempting to teach splinter skills. Splinter skills are very specific situational skills that do not generalize. To some degree this can be done, but rarely well or quickly and rarely does it stick.

Many of the functions that we would love to see change, the appropriate behavior social skills we would be delighted to see emerge and the maturity that we hope for, are really reflections of what is termed executive function. If we understand executive function and how it develops and is built, we can dedicate more of our time to what works and not so much to what doesn’t.

If we are to be successful in helping a child develop and gain foundational skills including behavior, social skills, and maturity, we must first establish the neurological and cognitive foundation.

And now for the rest of the story…

—Bob

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Plan C

NACD Bob Doman Blog Plan CI’m in LA, flew in this morning and spent the afternoon working with a couple of great families.

I had a quiet dinner and read my book in the hotel restaurant. When I left, I saw the hotel manager and we passed pleasantries. I’ve been coming here for many years, and Arthur and I have kind of grown “older” together. He asked how I was and I commented “okay,” but he had observed my slower than normal pace. I acknowledged that my back was giving me fits. He said that getting older was better than option A (not getting older). I suggested that I wasn’t happy with Option A or B (accepting the inevitable) and was going to pursue Plan C.

What is Plan C? Plan C is investigating, working and fixing my back so I can actively pursue life. For so many of our children and us, the perception is that our choices are limited; accept the diagnosis and prognosis, follow the typical path, and accept the inevitable. I don’t think so!

The medical model—make a diagnosis, based on the diagnosis make a prognosis, and then apply accepted procedures—doesn’t work for me. For children with developmental problems, that means accepting labels, creating expectations based on the label and on how the “professionals” have failed those with the same labels, and then making accommodations and accepting limited potential. Hooray for all of you “average” people who choose to be exceptional. Hooray for all you parents who have children with educational or developmental problems who choose to believe your children have unlimited potential.

Let’s hear it for Plan C!

—Bob

Two A’s and a B and Lots of Smiles

I believe we are at about thirty-three thousand feet and the pilot is about to tell us all to stay put as we enter a storm system over the Rockies. I’m heading home. Today was my last day on a two-city trip. On this trip I saw adults and kids in Cincinnati and St. Louis.

As I’m heading home I can’t help but smile as I think about the kids and adults I’ve seen over the last two weeks and all we shared.

NACD Bob Doman Blog - AllyMy 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!

NACD Bob Doman Blog - Abby - Down SyndromeSt. 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!

Today, my last day of the trip, I saw Brae who just started on program in February and today her two sisters came in for programs. Both of the girls are going to be absolutely brilliant. Brae has a genetic disorder that has the long name of Inverted Duplication Deletion 8p. To her family and me, she is just cute, fun, smiling Brae with unlimited potential. Today she came in and from across the room looked at me, eyes focusing and working together, converging and gave me a huge smile—a smile that remained in place throughout our time together. Today I got to see her walk by herself without as much as a finger of support. Big deal! Gargantuan deal—wonderful!  I also got to hear her talk. Big deal! Gargantuan deal! And I got to see her smile, I got to see her mom smile and when they left, her mom gave me a big hug and we shared the miracle of her girls. Brae and her sisters made my day special. Another in a stream of literally thousands and thousands of wonderful days filled with incredible people.

 

 

As I sit here in the plane and think about the trip and the incredible range of issues that needed to be addressed, I ponder, as I do in virtually every waking moment and through most of the night, how do we do this better. I know there are a lot of things our kids and adults aren’t doing yet, that we need to figure out and work on, but as I review our time together, we had smiles—big smiles and lots of them. Wherever they or their children are on their voyage, however far we are striving to go, everyone of them, everyone of the parents were smiling about who their kids are today, valuing them for who they are and appreciating where they are on their journey. We were all thankful for them.

We see kids for who they are, for what they can do, for what joy we can bring to their lives and what joy they can bring to ours and others’ and we all share in the joy of watching them grow. I feel humbled and privileged to be able to participate in the process.

Thanks!
—Bob