Tag Archives: functioning

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?


Is Anyone Listening? Sensory/Motor Treatment for Autism

autismIn a scientific article published in Behavioral Neuroscience, May 2013, researchers at the University of California Irvine found that environmental sensory and motor enrichment serves as an effective treatment for autism. This may be the first “official” study demonstrating that sensory/motor treatment can effect change in autistic children. (I actually applied for a government grant back in 1974 to research a significantly more comprehensive developmental-sensory/motor program. It was rejected by the government because there wasn’t any research that would show that it worked—which would have been the point of the study–but the reality is that academic institutions get the funds, not the people who are out there actually making the discoveries.) Sadly, most people in the field still don’t get it. Where would we be without such open-minded people who are in possession of such wisdom? We have since been able to compare literally thousands of children within the spectrum based on the treatments they received prior to NACD’s Targeted Developmental Intervention and with TDI, using the children as their own controls. We have been fine-tuning what works for over forty years and helping these children not only progress faster, but in some cases lose those dysfunctions and behaviors that define autism.

The UCI study found that providing sensory and motor input, even if not individualized to a child’s specific sensory or motor issues, leads to much better overall results than the standard treatment alone. The standard treatment included ABA (applied behavioral analysis), traditional speech therapy, occupational therapy, and social skills therapy. The researchers divided 28 autistic boys, ages 3 to 12, into two groups based on matching ages and severity of autism. The control group underwent standard therapy, and the treatment group received standard therapy along with “directed environmental enrichment.” The directed environmental enrichment included a kit of different objects that were “sensory,” but which they felt addressed common sensory-motor issues for autistic children. The kit contained essential oil fragrances for smell, squares of materials such as sandpaper and felt for touch, pieces of multi-textured materials to walk on, and items to manipulate such as a piggy bank with plastic coins for motor issues. The parents were also directed to do different exercises, such as dip their child’s hand or foot in bowls of water at varying temperatures of hot and cold, or touch the child with metal spoons that had been heated or chilled. The treatment group was directed to do two 15-30 minute sessions twice per day, with each session consisting of a few activities involving different combinations of the sensory stimulation objects and exercises. The children also listened to classical music once a day.

After six months, 69% of the parents of the treatment group children reported improvements in overall autism symptoms, compared to only 31% in the control group. Furthermore, 42% of the children in the treatment group made significant progress in social behaviors and responsiveness, compared to only 7% of the control group. The children in the treatment group also improved perception, reasoning, and other aspects of cognitive function, whereas the control group of children undergoing today’s standard treatment for autism actually had a measured decrease in cognitive function!

I actually find the results pleasantly surprising. As most of our families would testify, the amount of intervention was incredibly minimal and the intervention was neither targeted nor individualized. As we continue to learn, the more specific we can be in understanding the individual and applying very specific targeted treatment, the more effective we can be. Children with the same label can be incredibly dissimilar. I appreciate the UCI team’s work and their acknowledgement of the role of sensory/motor treatment in those within the autism spectrum and for bring this information forward. One would hope that practitioners would not now view this study and adopt the treatment regime used in this study as a model for a basis of treatment, but would open their eyes to the potential and join us in building the understanding and developing really individualized targeted programs and, based on that knowledge, to help in the development of more and better tools. Having worked with the sensory/motor issues related to autism since the late sixties, and having put information out for the public’s use for over forty years, I would hope and think that more people would be listening. This isn’t new information! It never ceases to amaze me that of the thousands of therapists and educators who view firsthand the children that work with NACD and the difference that Targeted Developmental Intervention makes, that only a handful ever want to understand what produced that change. But it only takes a few dedicated free thinkers to get involved, to help us reach a critical mass, produce a tipping point, and change perspectives and lives. I am happy to speak with or assist any researcher, therapist, physician, or educator who would like to learn more about what we have been doing for all these years and what we have found that works. After so many thousands of children from around the world and so many years of striving to understand and treat these issues better, we have actually learned a thing or two. And, as always, we are looking to help any parent who wishes to help their child.

Related Links

Original Article (PDF): Environmental Enrichment as an Effective Treatment for Autism: A Randomized Controlled Trial – Cynthia C. Woo and Michael Leon – U.C. Irvine – Behavioral Neuroscience May 2013

To learn more about NACD’s Targeted Developmental Intervention:

To learn more about NACD’s approach to treatment for autism: