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.
I’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.
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.
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!
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.
Meet Fletch. This little guy has been on an NACD program since he was one and is another great example of what kids can do if given the opportunity.
Fletch is fun, happy and at age three-and-a-half during his last evaluation was processing almost five digits, was reading over a hundred words, understanding basic math concepts, conversational and excelling physically.
This video of Fletch on the climbing wall was his very first time climbing—the very first time! On his second climb, he went to the top of a 55-foot wall. Fletch’s ability to do this well on his first attempt as a three-year-old (and according to his instructor, better than most of his twelve-year-old students) is a reflection of Fletch and who he is, but also of his superior processing skills. Short-term memory, working memory, and executive function permitted him to look at the challenge and understand that he was going to be safe and that it was going to be fun. Watching him on the wall is a reflection of his focus, attention, planning, organization of his motor skills, proprioception, and maturity.
Fletch is a great kid with a great future and another NACD kid who is showing people what is possible.
The key to development and education is building the foundation and helping the child realize their potential. Fletch is unique. All children are unique, and they all have incredible potential. We need to help everyone understand that the key is building the neurodevelopmental foundation, turning children onto learning, providing them with opportunities, then standing back and getting out of their way.
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.
I just read Benjamin Franklin’s autobiography, and in his discussion of virtues, he added “humility” to his list. Having admired Franklin as an incredible man with a very long list of virtues (and a rather large ego), I was amused by his statement in referring to humility:
“I cannot boast of much success in acquiring the reality of this virtue, but I had a good deal with regard to the appearance of it…I even forbid myself agreeable to the old laws of our Junto,* the use of every word or expression in the language that imported a fix’d opinion, such as certainly, undoubtedly, etc., and I adopted instead of them, I conceive, I apprehend, or I imagine a thing to be so and so, or it so appears to me at present.”
My education and involvement with “experts” has been littered with emphatic opinions stated as “facts” that I have often rejected out of hand. Not a few of these have had to do with what you supposedly can’t do. Not a few of these expert statements involved the “powers that be” declaring that something couldn’t be done. I spent years changing IQ’s when the experts said you couldn’t change IQ’s and decades changing working memory when virtually every “expert” said you couldn’t change and build working memory. One of my first, but many major conflicts with the system and the experts involved my getting in trouble with the State of Pennsylvania for educating trainable children in the early 70’s. It appeared to me that if I were in fact teaching children to read, write and do math that they obviously were educable. But, the brain-injured children, children with Down syndrome, autism, etc., who they proclaimed to be uneducable, and thus were denied an educational opportunity back in the 60’s and 70’s, were the victims of the “experts” self-fulfilling prophecies and not their lack of potential. I must admit it was then, as it is now, very fulfilling proving them wrong over and over again, as it was with the “blind” children who would “never see” who learned to see, the children who would “never talk or learn” who talk you ear off and academically do better than many of their “typical” peers and the countless number of children who would “never walk” who learned to run—not to mention all of the “average” children who became truly exceptional.
I was literally raised with my father, a renowned but very humble physician, teaching me that the foundation of all brain development is neuroplasticity and if you understand neuroplasticity there are virtually no limits to how you can grow and develop every brain.
Throughout my career, I have been rather astonished by how slowly things change; how it is that educators, psychologists, therapists, physicians and other “experts” are often so slow to question and challenge their beliefs and practices and accept limited expectations and often failure. If we could just accept that in all science, there really are no facts and accept that it just “appears that”.
* Junto refers to a club that Franklin established in 1772 for the purpose of debating morals, politics, philosophy and to discuss knowledge of business.