Hey Target - Bullseye!

I had to take a minute to blog about the recent Target advertisement showing an adorable little boy with Down Syndrome. To Target - I say you have a loyal customer.

To another retailer I have blogged about in the past, who puts out a sham of a catalog each year for "differently-abled" children, and could not be bothered to answer letters, phone calls, or respond to e-mails, I hope you are seeing all the buzz about this ad and realizing a few things.

Children like my son need to see themselves as accepted, not segregated as "differently abled." If you truly knew children you would realize that every single child in the history of the world has been "differently-abled" and your attempt at "skill coding" your products should be done anyway - for all children. My son needs another label thrust upon him about as much as he needs you pointing out his differences.

If You Have to Talk About It - You Ain't Got It. 

Whether it be a trash talking athlete who continually boasts their greatness or a retailer who has to call attention to their *ahem* compassion by putting out a "differently-abled" catalog, you haven't got a clue about the families you are trying to woo. 

This Target ad speaks for itself, a picture of diversity - no doubt a calculated decision, but the right one. You wouldn't dream of segregating a child for any other reason - why is it acceptable to do so in the case of children with Down Syndrome?

Simply allowing children with Down Syndrome to be part of the big picture does many things.

It sends a message that all children are equal.

It shows that children with Down Syndrome are just as beautiful as every other child.

It shows respect.

My children are only special to me. To everyone else, they must be treated with equality. 

The Difference Between Special and Extraordinary

This photo was taken the first day of school this year. It was such a great day as Lucas not only reciprocally went up the stairs, but counted them, out loud, in Spanish. The hard work play we had done over the summer had paid off big. Speech, gross and fine motor, maturity all soared as you have read in previous blogs.


From September until now, many things have happened. Because Lucas goes to school two hours a day two days a week, we come home eat lunch and he naps. Our "Play" is wiped out. Even the other three days "playtime" is limited because of everyday life things like grocery shopping, appointments etc. Lucas's optimum goal of crawling and creeping 600 meters daily was falling woefully short at around 250 meters 3x/week. The reading program which should be done 10 or more times daily was only done 5 or so, and the brachiating which should be up to 10 lengths with 50% weight support by now...not even close and no patterning because we didn't have 2 extra people to pattern with us 12 times a day. Expectedly, Lucas's progress from September to now? Not quite as stunning.


In the hiatus from blogging between my last post when I had decided to homeschool starting next year and this post, I kept going back to what I know. Lucas has demonstrated for 2 years his ability to manage himself in the classroom. He also has remained the respectful, polite, well behaved child he has always been despite his *ahem* socialization. He also has shown us what he is capable of when he gets the neurological programming he needs consistently. The question has to be, what is our goal for our son. Why wait until next year? Do we wish his life to be special or extraordinary?


For anyone not familiar with what is commonly achieved with children with T21 (called Veras Kids) at the Institutes, here is a simple summary of just 10 of the thousands of children who have completed the program. Even the worst outcome there would be considered achievements unheard of here.


http://www.iahp.org/What.299.0.html


As I sit here looking at Lucas's map of Africa, I realize he is 30 countries in and doing very well. I also realize he hasn't touched it in a week. We should be done with Africa and on to Europe by now. He goes to the map everyday and walks away. He knows everything on it already, why would he care to look at it anymore? Probably just checking to see if his mom got her butt in gear and made 10 more countries, which she in fact did not.


Since deciding to "homeschool," I began researching methods, which led me right back to conventional education models...even Montessori at this point. Every educational model, whether it be administered at school or at home, focuses on the "outbound road." It gives a child either through direction (standard ed.) or self direction (Montessori) the opportunity to complete educational tasks. Motor pathways. Output.


The Institutes for The Achievement of Human Potential are nothing if not consistent. You can NEVER change the Brain and the way it functions by focusing on the outbound road. Typical children are ready for demonstration and matriculation because their brains have already done all the work on the inbound road (or so we assume, if that were really true there would be no reading or writing problems). Their brains are organized and ready to grow. Giving Lucas any of these requirements simply allows him the opportunity to complete them as his brain is organized now - and that is certainly incompletely.


In the beginning of this journey, I found one or two individuals who truly met the idea of what Lucas can be able to achieve. The closer I got to the road we should be on, I found more and more. It is common for Vera's Kids to not only speak, read and write fluently, but to do so in multiple languages, by the time they are 5. When these children complete the programming and enter classrooms they are most often at the head of the class intellectually and socially. 


The Institutes call the neurologic immersion programs "Closed Brain Surgery." With enough Intensity, frequency and duration, you change the brain, you change the very cells. To complete Lucas's full program, it takes between 8 and 9 hours a day. Today is day number 4 for us and Lucas just told me "Need break mom, go to sleep."


You sleep love, your efforts are heroic and your future extraordinary!

Seven Months and Proof in Plain Site

We seem to have an explosion of speech lately, so when Lucas answered "Scooby-Doo," when asked what he wished to be for Halloween, the mountains of hand-me down costumes from the boys, trips to 4 different stores, ordering online and paying double because of shipping and handling wasn't about to stand in the way of my boy and his best dog!

I've said it a million times before and it is more true now than ever, if I were reacting to illness and delay with everything we are doing (and thinking about doing), I would be completely overwhelmed. Ironically, since all of the decisions we are making are framed with the perspective of expecting achievement (and dare I say overachievement), there is more than enough energy; positive energy. Now if only there were a few more hours in the day!

First I want to give you an update on the past seven months and some evidence that we are on the right track. Back in April I went to the Institutes for the Achievement of Human Potential. Before I left I took Lucas for his bloodwork to his usual two girls at our usual clinic. These ladies are so wonderful with him especially since finding his teeny tiny vein and then waiting until his blood trickled out had been a nerve wracking experience. If it didn't produce so much valuable information, I could never take him. In any case, that round of bloodwork was the first time Lucas blood analysis revealed his body was balanced. Each and every value was within normal range. 

As soon as I returned from the Institutes we began our running program in earnest, creeping and crawling, hanging, and anything else we could have Lucas do to build his strength and increase his oxygenation. Patterning was frequent and consistent over the summer as well as a cognitive program that was kicked up about 10 notches. We have had an awesome 6 months. Although I have been keeping notes about Lucas's progress and things I had seen, the information is a result of my observation - easily considered to be lacking objectivity (though I honestly think I am more specific in my judgement of Lucas's development). It wasn't until 2 weeks ago that I realized I had actual proof.

Lucas had been due for bloodwork over the summer, but with finding a new practitioner, we waited until the appointment had been scheduled. We went to our usual girls and Lucas jumped into my lap to begin the process. After applying the band to his arm, the one tech turned to me in amazement and asked me what I had done - apparently his teeny tiny little hiding veins were now large and prominent in the crook of his elbow. The usual 10 minutes it took to fill three viles took only seconds as the blood rushed out as powerfully from Lucas as it would you or I. I considered her question, and I knew what I had done. Lucas had been in training, cardiovascular training, and the result was a more efficient and capable system.

I couldn't wait to get home and look at my notes. The following progress had been made in the same 7 month period of metabolic balance, running, crawling, creeping, patterning, and cognitive programs:

1. Gross Motor skills: 

- In May Lucas was starting to run, the quality of the running was that which would be expected of a toddler. It was mostly a fast walk accompanied by flailing arms. As of this posting, Lucas running is perfectly reciprocol with a little "hop" in his step. He jumps, bunny hops, and thinks it's fun to stand on one leg. This progress in 7 months is staggering considering how long it took him to progress to the point he was at last May.

2. Fine motor skills have always been very good, but we started a printing program with him and he is independently cutting on lines and working on two part zippers. Almost independent with dressing.

3. Speech:
- In addition to the programs and the balanced blood work we did add Curcumin, but we are getting whole sentences spontaneously as well as answers to questions and addressing friends by name. He yells, sings and has an awesome sense of humor. We went for our run and half way around he stopped, looked at me and said "I want to march." So we did.

I am anxiously awaiting the end of November when the traditional therapists must evaluate him according to the standardized evals. Without looking them up I know the progress is significant. It makes me wonder how any critic of the methods could legitimately say Lucas would have developed that way regardless. It was too many coincidences in the same small window of time.

So, with all of that in mind, I feel as though we have no sooner reached a rest point point along the road and the new path rolled out before us - and somehow the energy and excitement necessary to begin. We met with the new practitioner today, absolutely amazing. He did not change anything Lucas was on but added things to address the specific issues of speech and linear growth...my two biggest concerns. The two big cycles that can be devastated by mutations and imbalances (SAM and Folate cycles) have been focused on to date with excellent results. There is a third cycle, the Methylation Cycle that balances things like methionine, homocycteine, TMG, etc. as well as the critical outputs to the cycle such as DNA, RNA, neurotransmitters, adenosine and uric acid. Any parent reading this knows the mind blowing possibilities one or more mutations affecting this cycle is likely present in our children.

I have to just add here that it is so discouraging that all of this research was originally done for children with Down Syndrome and somehow the DS community has rejected it as junk science. I hear over and over again that "vitamins" are a waste of money and the concept of "Diet" is nothing more than calorie restriction. Each bite of food, each delicate combination and composition of vitamins / nutrients / minerals / enzymes, etc has specific effects on health, cognition and behavior. The community of parents with Autism picked it up and ran with it and now are having stellar results with their children. There is a whole host of organizations and sponsored conferences organized around gaining physician support. The treatment of Autism is lightyears ahead of Down Syndrome, and the research was done for us.

I have much learning, studying and understanding to do post haste, I have to digest this information and begin a new protocol, carefully adding, monitoring and adjusting until success is noted. And it will be noted. I can't wait to begin, because it is the starting point for our new path.

My son's development is an inescapable dichotomy, and as a therapist this fact eluded me - as a parent it can not be overlooked. My son can read and organize presidents, vice presidents, inventors, geographies, life cycles of animals, complete simple addition and subtraction, carry a basket through the supermarket with a written list and find the items, manage a routine, remember and generalize skill and learn - in some cases - outlearn his typical peers at four years of age. These brilliant skills will not be cultivated or even recognized in a classroom of 15 other students who are able to fully communicate ideas, albeit about Sponge Bob or nursery rhymes.

I will find myself trying to convince a teacher whose job it is to teach a class (of course teaching to the "average" and dealing with the outliers) that my son who can not find the words as quickly as his peers, or make his needs known as clearly - is actually capable beyond the average expectation, probably well beyond the highest outlier. My son who loves to learn more than anything else will be asked to respond, demonstrate and prove himself. How long will it be before his desire to learn and know take a back seat to an idea that he isn't as good as the other students? I simply will not allow it.

I have said before, on graduation day with a full diploma and an entrance to a college Lucas earned, the timeline of when he achieved skills will not matter and now it's time to put my money where my mouth is. I have decided to homeschool Lucas next year. Our focus will be on a Montessori approach cultivating his love of things like geography, science, and history. We will continue to work our IAHP program with increased intensity, frequency and duration (can't wait to post  a pic of the massive 18 ft. monkey bars in my livingroom!) We will introduce music lessons, art classes and build Lucas's confidence and self concept while we watch his speech blossom.

At this point it is a one year plan, that is likely to change based on what happens. All I know, is that when Lucas does enter a classroom it will be as a peer, as a confident and self assured student, and an accomplished outlier.

Anyone in this brilliant community of parents, educators and teachers who have ideas or resources that can help me ramp up my knowledge base quickly, I would greatly appreciate it!

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