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

National Down Syndrome Awareness Month - Eve

I have been working on some projects for October, National Down Syndrome Awareness Month. I have become engrossed as of late in the history of "Down Syndrome" and far we have not come. Despite our knowledge of the extra chromosome and what it can mean, despite deinstitutionalization and integration, despite discussion of "tolerance" and "acceptance," I have found a time machine of sorts.  Dr. Langdon Down's very first published position paper to the governing medical body. 


In it, he writes that it is his belief that every class of idiot can be directly linked to an ethnic group based on their physical appearances. He notes the "Ethiopians" and "Malaysians," but reserves his medical brilliance for the group of idiots - the largest group - of Mongoloids. He describes their ability to mimic, their demeanors to be pleasant, and their skills to improve when worked on. He describes their common deficits (and relates them back to an ethnic group that clearly was not thought well of at the turn of the twentieth century).


As we enter October we will be swathed in pink because it is also Breast Cancer Awareness Month which celebrates another group of people who were discriminated against and thought to be mentally "substandard;" women. The difference is that we rose up, demanded equality and fought for it. Who will do this for our children? Who will demand equality and changing mindsets for a group of children many hope do not exist in the future?


And forgive me, those of us who rally around the "special needs" events of this month; the awareness walks - that only members of our community will attend, the special events for special people that give us so much comfort and security, and the support networks that seek to create and provide more special options designed to keep our kids special for life, what are we doing?


Why are we not inviting physicians and medical practices to lectures and seminars on things we know to improve health and development in our children? Where are the articles and blogs demanding equality for our children? Is it enough that our children be "tolerated," or "included?" 


We've not psychologically moved beyond the doors of the Asylum for Idiots. Are we so grateful that our children are tolerated and accepted that we fear opening our mouths? That we fear being wrong so as to not stand up and fight for our children's rights? 


There is outrage across the country of young people being bullied to the point of taking their own lives, and rightly so, but is the bigotry and vitriol aimed at a group of children who dare enter this world not a reason to stand up as well? 


I have copied Dr. Langdon's Groundbreaking first medical paper for you to read, it isn't that long. As you are reading the very words he chooses and the obvious prejudices of the day he references, ask yourself are things ANY different today? Do people think ANY differently today? If they did, there would be 92% more people born with Trisomy 21 every year. 


Make this awareness month count.


http://www.neonatology.org/classics/down.html

Walking the Walk

I love this photo, it really epitomizes our life with three boys! Believe me I have tons of these as they take over my photo booth app!

I've been away for a bit trying to get into the groove of this new school year. Noah's in fifth grade and so many new things coming his way, JV baseball, soccer and student council speeches, all of these on top of maintaining grades and managing the increased expectations around the house. Ryan (with whom I can relate all too well!) has to adapt to the increased demands of second grade, it's no longer enough to be able to read, but apparently now you have to go slow enough to actually know what you read. This is very difficult when you have 74 different ideas all competing for time - again, I know exactly where he's coming from! And of course, trying like crazy to get all of Lucas's programs done between the hours of 8:30 and 2:30, so as soon as the boys walk in the door I'm theirs.

Through all of this I can't deny that I move through experiences with Noah and Ryan with an eye toward Lucas. How will he manage a heavy backpack full of books? Will he be able to play baseball and soccer? How in the world will I have enough energy to do what must be done? If I don't, how do I explain to my boys that Lucas indeed was on the right path, but I was too tired? The nice thing about being busy is that you have very limited time to dwell on these thoughts, but they poke in none-the-less.

On top of these questions, several moms I have come to respect and admire on this journey seemed to be having a crisis of faith as well. Two friends have had to deal with hospitalizations of their little ones because of viral infections that led to severe breathing problems. One mom whose daughter is older was questioning whether she should "adapt" her dreams for her daughter, and another is questioning whether to try the educational route she believes in her heart to be possible if it will end up with her son being moved to a different school anyway if it doesn't work.

I have no no great insights to lessen the burden on these moms, I can only say that I truly know the weight of these things on their heart and soul. It is that very weight, and fear of it, that gets me crawling the last 30 meters, or dragging out the cutting board and vegetables when I feel like ordering out, or forgetting about the last reading session of the day because I can barely keep my eyes open. It is also what gives me some clarity.

Until Lucas proves he can't, I have to assume he can. I have to let him go to regular school and give him the chance to carry the backpack, try out for the team if he wants, and run for student council. I have to let him follow the path I believe possible regardless of what might or might not happen. I have to let him have a shot at forming friendships and relationships wherever he goes to school and if we have to make changes somewhere down the road, I have to believe he will do it again in a new environment. I can't freak out when a parent has the poor judgement to send her kid to school whooping (Seriously!), the bottom line is that our world is filled with things to which Lucas will be exposed. I can't worry about the next time he gets sick, because inevitably, we all get sick. I have to take solace in the fact that he is very healthy and if he succumbs to an infection, it will not be as devastating to his system because it is strong.

I am a bit of a control freak (I'm sure you didn't know) so when Ryan is reading something for the third time at the speed of light, I get frustrated trying to get him to slow down, I think about the next couple of grades and how demanding they are and wonder how in the world I'll get him to slow down enough to get through. I find myself getting annoyed with Noah because he takes on so much that it leaves little opportunity for set schedules, I find myself slipping into the bad habit of threatening loss of a baseball game or soccer game if this craziness continues..or worse yelling that we're late again at the top of my lungs. I wonder what will happen to him if he doesn't learn to say no and realize he has limits.

Maybe next year I should just keep him out of the extras so there's no choice but to focus on homework. Maybe I could not allow Ryan to do any of the other 74 things he wants because I'm afraid he wont do well in school next year. Then it hit me, that's ridiculous. I can't keep them from trying, even if it doesn't end well. I can't tell Noah not to run for student government because it might boil down to a popularity contest and if he doesn't win he will be upset. I can't control Ryan's every move to help keep the 74 other ideas from interfering with his reading.

Why is it any different with Lucas?

What's the worst thing that can happen? I give him my love, support, and encouragement and there may be obstacles - or walls - we need to work around or change direction, how is that any different from any other child?

I think the only person I need to try and manage is me, I need to realize that each son of mine is going to grow up and have a wonderful life - a life of their choosing. After all, Noah my decide to run for President someday, Ryan might be a wildly creative author, and Lucas, well - we'll just have to see which one of his gifts he'll decide to pursue.