Fifth Grade Science

I can't help getting excited when Noah brings home things like this to study because I love science and all things related to it. I marvel at the absolute improbability that any of us walk and talk given the trillions of chances for it not to be so.

His test is today, so last night was quiz night. What is usually the end of the studying turned into an in depth discussion of cellular health...with my 5th grader. What was even more amazing was Noah's insights given just a rudimentary knowledge base were far more logical than most "traditional views" of Trisomy 21.

Here's the logic. The genes are encoded in the chromosomes. The chromosomes are housed in the nucleus. The nucleus give the "directions" or the "working orders" to the rest of the cell. Based on these directions, the mitochondria take in nutrients and convert it to energy - the powerhouse of the cell, literally giving life energy to all the structures. The vacuoles perform cellular "digestion" and waste removal. The cell membrane decides what to let in and what to let out as well as give structure to the cell. Every cell, every nanosecond, every tissue, of every organ, of every system (nerve, skin, brain, muscle etc.), of every day.

What happens to the "working orders" when there are extra genes encoded on that extra chromosome, on that 21st level of the double helix in that nucleus, in every cell of the body? We know what happens. "Down Syndrome." And if these incorrect "working orders" are given since the day of conception, without intervention, what will happen at age 5, 15, 25, 35? We know that too. All the "inevitabilities" of traditional views of Down Syndrome. 

The contention has always been, there is nothing you can do about the extra gene mutations encoded on the extra chromosome and the combinations / permutations are endless that's why some babies have heart problems and some don't, some have very "typical" physical features and some don't, etc. But what if there was a way to override the working orders moving forward? If the mitochondria for example, are not directed to convert things like folic acid and ubiquinon, why not do the work for it and give the mitochondria folinic acid and ubiquinol? There are thousands of these interrupted working orders to be discovered and corrected. 

And if we do, and if brain cells have healthier branches to synapse and make connections might there be better cognition? And if skin cells are stronger, might there be less eczema? And if muscle cells are healthier, might muscle tone and overall activity level be affected? And if white blood cells are healthier, might there be less infection? And all of this despite the extra chromosome? Most importantly, as asked by my 5th grader...Why don't doctors tell everyone with Down Syndrome to do this?

This approach seems infinitely more logical to me (and apparently Noah) than allowing a baby to grow and develop according to incorrect working orders until things like cognition, personality, health, early onset Alzheimer's, are seen in the first, second and third decade of life where traditional medicine thinks there is an opportunity to "fix" it by researching a new pill. I have said it many times, that pill very well may ultimately enhance cognition and health for example moving forward, but it can not ever undo the past 3 decades of incorrect development. Not to mention, the pill will be a laboratory concoction of chemicals designed to go into the brain's cells and do some chemical "rearranging." Does this sound like there may be risks?

Yet vitamins, nutrients, enzymes, and antioxidants that occur in nature will not be supported by the AMA, APA, and NDSS, because of risk? An endocrinologist has no problem giving a child synthroid (a laboratory chemical to simulate thyroid hormone) for life to balance out thyroid function, but a trial of increased iodine, selenium and a few other nutrients is "risky?"

No one following this path has ever suggested that any and all consequences of the extra chromosome can be accounted for and alleviated. But there are enough of us around the world coincidentally doing the same things and getting the same results. Isn't that worth looking at? Science thinks because it gives a group of kids who are 10 years old vitamins for two months and at the end there is no significant difference that vitamin therapy does nothing. I agree, when used in that manner, it doesn't do anything - it never will. 

Until doctors are open to the possibility that every child following this path and getting good results are not just "lucky," "atypical," "high functioning," (or my favorite) "would have developed this way regardless," there will be no change. There are thousands of us around the globe - please look at us.

Updated Link

Sorry for the inconvenience, this should work!

http://www.youtube.com/watch?v=TRYloIGMbK0&feature=youtube_gdata

Putting Old Photos to Good Use

I have had occasion as of late to pour over tons of old photos (I'm sure you'll be hearing why very soon!) and decided to put them to good use. I hope you enjoy, feel free to share. Love to you all - G
http://www.youtube.com/watch?v=tPcfJtXWfMc&feature=youtube_gdata

The following article was co-written by Kristen Morrison of Naturally Better Kids in Australia and can be found on her blog as well (links at the end of the article). The article itself will be released to the press in the coming week, hopefully gain some media attention. The beautiful photo was taken when we met in New York. Please share with all who may be interested!

Down syndrome – It’s time for a clean slate.

We two mothers have a similar tale. We both looked forward to the birth of our sons, the third in each of our families. We delivered our babies, with curious ease, and then endured indescribable pain when we learnt that our newborn sons had Down Syndrome.

We had to wait many days for the diagnosis to be confirmed – although we knew in our hearts it was so. We craved information and searched far and wide for answers to help our boys. The questions came from nowhere – how will he grow up, what will his life be like, will he be healthy, will he be loved, how will we cope? Most importantly, in those first few weeks, we wanted to know how to care for our babies.

The need for prediction coupled with the inability to escape, were crippling to say the least.

Our yearning led us to many sources, each one more certain than the last that our son’s lives, our own lives and the future of our families were on a very predictable path. Based on the past 50 years of “research” since the extra chromosome on the 21st level was discovered, we could each predict that our son’s health would be a source of great concern along with poor development, difficulty learning and behavior problems. These issues would predictably strain our marriages, our social standing and the futures of our other children.

We struggled with the inevitability of it all, with the suddenness with which our lives had become so completely predictable – to those ‘in the know’. The idea of being part of a “special” community left us feeling so alone and isolated and despite finding hundreds of articles, books, programs and classes designed for the “special” child, it felt anything but special.

We decided to ignore the gloomy predictions and forge our own paths. These paths led us to each other and today we unite as mothers of 4 year old boys who have NOT conformed to expectations.

We were astonished to learn how similar our approaches had been and remain baffled that assumptions about our children’s potential are based on the observations of adults born decades ago – before early interventions, before supplementations, before developmental programs, even before people believed our children had the right to exist outside of an institution.

The perceived inevitability of things like Alzheimer’s and early onset dementias are based on adults who were born in the 1950’s and 60’s. What of these children of the new progressive age? What of the very real possibility, as stated by the Alzheimer’s Association (USA), that the prevalence of Alzheimer’s in the Down Syndrome population is in part dependent on a variety of variables, environmental and familial among them? For modern medicine to concede they’ve made no progress in the area of understanding Trisomy 21 since the days of the institution is unsettling at best and yet we are expected to take their word on predictability and inevitability?

We are focusing our attention on treatments to optimize our children’s potential and we are getting results. Modern medicine focuses its attention on earlier methods of detection so that the very birth of babies like ours can be prevented and have no interest in our results. How is that modern or forward thinking?

Unless we are directly affected, and have a burning desire to make a difference, there is little discussion of what may be achieved. There is so much “overwhelming evidence” of predictability offered by medicine that the majority of parents – if given the choice – opt not to even have a child who is diagnosed with Down Syndrome. And yet thousands of mothers and fathers do forge ahead and are changing the future for the new generations of children with Down Syndrome. These parents create a unique path and have significant results but they are dismissed as wishful thinkers who are in denial. Indeed our very children who can read and learn and remember, run and climb and pretend, make friends and succeed in school are dismissed as “outliers*” or “high functioning” or “lucky”.

When we find the volumes of articles, foundations, books and websites written by parents screaming at the top of their lungs that this is a journey worth taking, spending their lives to convince us simply to raise our expectations for our children, we are warned by the “specialists” not to believe these parents because they paint too rosy a picture.

So our question is this – here in the 21^st Century, can we not wipe the slate clean for children with Trisomy 21, abandoning these archaic predictions and bigotries? Can’t we teach them with the gift of high expectation and encourage them to be brilliant? CAN’T WE look at the evidence which is there to be observed if we choose to? Would you agree that any person embarking on a challenge with an expectation of defeat will more than likely fail?

Our children are born as if wearing a sign which says ‘substandard’. We think it is time to wipe the slate clean and for the first time in history allow these kids and their parents the opportunity to predict their own futures.

Surely that’s every child’s birthright.

~ Geralyn Spiesz & Kristen Morrison

Outlier: An outlying observation, or outlier, is one that appears to deviate markedly from other members of the sample in which it occurs. ~ Wikipedia

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Geralyn Spiesz is a Master’s level occupational therapist who has been practicing since 1994. She began her work treating clients with developmental disabilities and went on to become a partner at WNY Physical and Occupational Therapy Group PLLC., where she developed programs and clinics to address needs across all service areas throughout the eight counties of WNY. Geralyn was the sitting co-chairman of the Niagara Frontier District of the NYS OT Association from 1999-2000.
Geralyn is the mother of three boys, the youngest of whom has Down Syndrome. She now works to blend her expertise as a therapist and her first-hand knowledge from a mother’s perspective to redefine the ways in which Down Syndrome is approached both developmentally and in society. Geralyn lives in Buffalo New York with her husband and their three boys and is currently finishing a book Redefining the Reality of Down Syndrome; Baby’s First Year and Beyond. She blogs atthedownsyndromeactionplan.blogspot.com

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Kristen Morrison is an Author, an advocate for natural health and lifestyle for children and founder of the Naturally Better Kids website. With the birth of her third child, diagnosed with Down syndrome, she abandoned her career in fashion and embarked on home-based research to help her son achieve his best possible outcome. Encouraging results over a three year period led her to share her family’s story through her book, Naturally Better and to establish a website to help others access resources which were life-changing for her son. In early 2011, Kristen co-founded the Grow Foundation to help other parents improve the lives of their children with special needs.
Kristen works to help raise awareness for the difference parents can make in their children’s lives through natural lifestyle, alternative therapies and by keeping expectations high for children with special needs.
Kristen lives in Melbourne, Australia, with her husband and their three children. She blogs at her website www.NaturallyBetterKids.com

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For more information, contact Kristen Morrison (Australia) 0433 450 804 naturallybetterkids@gmail.com or Geralyn Spiesz (USA) 716-597-7941geralynOT@yahoo.com