Tag Archives: special needs

April is Autism Awareness Month

NACD Autism Awareness MonthIt’s Autism Awareness Month, so let’s talk about ASD (Autism Spectrum Disorder) and awareness.

They say you are what you eat. They should also say you are what you attend to and can process. What you perceive, the quality of what goes into your brain through your sensory channels, what you pay attention to and how much of it you can process essentially determines what and how much you learn. In turn, it determines how you can think, what you know, how you develop and ultimately your quality of life.

One way to gauge the level or degree of involvement of those on the autism spectrum is to look at what they give their attention to, their overall level of awareness and the degree to which they are present and engaged. As we look at individuals with sensory issues, which is generally how we refer to those on the spectrum internally at NACD, we start with observation and understanding that individual for the purpose of providing strategies to improve specific and global function.

We can observe virtually any child, watch what they are paying attention to and see how much they are attending to what is happening around them. This gives us a fair sense of what and how much they are learning and developing and what issues need to be addressed. Everyone essentially attends to what is meaningful to us and ignores what isn’t. We can observe any number of children who are on the autism spectrum or who have developmental delays, look at their behavior and develop insight as to their needs. For example, if there is a child staring at a ceiling fan rotating over and over, or a child who is in the corner waving their hands in front of their face and making repetitious sounds, or a child sitting quietly sucking on and smelling their fingers, or a child who is pacing around the room, relatively oblivious to anyone or anything going on in the room, then we know we have children who are essentially not present, not learning and not developing. We could also observe other children who are trying to get our attention, or are going around the room investigating and getting into things, looking at this and that, touching or banging things, knocking things over—children who are much more present and are learning and developing at a much higher rate. The varying degrees of a child’s involvement and of being present is essentially a representation of their level of severity and where they are on the spectrum.

The first group of children are not only not learning, they are engaging in behaviors that are making them more and more isolated, further delaying the normal development of their sensory channels and teaching their brains to ignore more and more of what is in their world. For their brains, the meaningless is meaningful and significant to their brains, while what should be meaningful is essentially meaningless. The exploring child is looking for meaning, for significance and that child’s brain will continue to do this with every new opportunity. The degree to which any child is inquisitive, attending to the right things (be it making eye contact because they know there is something to learn from observing your face and listening to your words, or looking at the people and things in their environment and interacting with that environment), the more present they are, the better and higher their level of function, the more and faster they are learning and developing.

Neuroplasticity, that thing which permits the brain to change and develop, occurs through input. It does not simply develop because we are getting older. The quality and quantity of the input the child’s brain receives determines not only how rapidly the child develops, but also how they develop. Good input generates good change and development, while bad input produces negative changes to the brain and impairs development.

Awareness, being present, is that which determines the direction and rate of development. For any child with a developmental delay, normalizing sensory function, redirecting them when they are “stimming” or engaging in DSAs (Debilitating Sensory Addictions or sensory addictive behaviors) and providing them with as much specific, appropriate, targeted input as possible is the formula that can produce the desired results and foster development. Positive neuroplasticity occurs when we provide the child with specific, targeted input that is delivered with sufficient frequency, intensity and duration.

For those children on the lower end of the spectrum, intensive neurodevelopmental intervention is needed to help bring their developmental pieces together. For any child with lesser issues or with a developmental delay who cannot process information or coordinate movements well enough to play independently, they are at risk of getting too good at infantile sensory play, getting developmentally stuck and need intervention to rapidly develop their sensory function and processing. Every child needs attention. Every child needs specific appropriate input and opportunities to maximize their potential. As parents, educators and those assuming various roles in helping children become all they can be, we need to perceive every child as having unlimited potential and do all we can do to provide them with opportunities commensurate with that perception.

All parents should be aware of what your child is and isn’t attending to. Pay attention to how present they are and be proactive. Bring them into this world or they will go into their own. If they have a problem, don’t perceive it as a disease, let alone an incurable disease, perceive it for what it is—one of many developmental steps that you need to help them achieve on their way to achieving their unique potential.

—Bob Doman

 

 

 

 

 

 

Autism Awareness Month – Should we really be using a disease model?

Bob Doman Autism Spectrum Disorder Disease Model NACDI am opposed to labels in general and “autism” is no exception. I am also generally opposed to looking at most developmental issues as diseases and again “autism” is no exception. The label and perception of autism as a disease leads to the perception that there is or that there needs to be a cure, that there is a pharmaceutical cure—a magic pill. I have also believed, having dedicated my life to understanding how to help all people achieve their innate potentials, that our strength as a species lies in our uniqueness as individuals—in our diversity. Every child has developmental needs and the better job we do at addressing those needs, the better job we have done at helping them achieve their unique potential. With those on the spectrum, our job is not to cure, nor to merely teach them skills that we feel are commensurate with the limited potential associated with their “disease”, but to assist in the developmental process. As with all children, we need to assist in developing their sensory function, their processing ability and as much as possible provide an individualized education in a positive, supportive, “typical” environment while simultaneously celebrating their uniqueness and ability to contribute to society. I have been very privileged over the course of five decades of work with Autism Spectrum Disorder (ASD) to have assisted thousands of individuals ascend through levels of the spectrum to become happy, successful “disease-free” members of society. Our job, our role for those on the spectrum and for that matter all children, is to understand and assist them in their ascension to a full and happy life.

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.

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