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

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.

Lucas and His Inventors

http://www.youtube.com/watch?v=vB0derpkMoQ

I just wanted to share a short video. Lucas started a new knowledge program, inventors, 4 days ago in earnest. Today he readily identifies them, reads their names and inventions well enough to match them without any verbal prompts, and as you can see in the video, he is very aware when one is not asked and who exactly it is!

There are so many hopes being raised by the new cognitive enhancing drug trials, and I truly hope they may provide benefit to those who choose to use them. I believe that given what we know about poor dendritic formation (and neuronal death), the atrophied (or dystrophied) appearance of the hippocampus, and phenotypical symptomology of poor memory, difficulty learning, and poor generalization of skills is true, and it develops over time...from birth.

If a child has developed cognitively, without intervention, until 8 or 9 years of age - I simply do not know how a medication can undo what has been done, how a drug can re-develop neurogenesis. I can fathom future potential being affected, but what about the foundational skills that have all been formed atypically?

I know it is very simplistic, but we have been doing "storage-retrieval-generalization" activities daily with Lucas since he was an infant. That combined with proper antioxidants and neurologically supportive..natural supplements have brought us to this point in time, which is all I am able to talk about.

At age four, I see Lucas's ability to learn brand new concepts, remember, and generalize them, becoming quicker, more efficient and more accurate. He remembers minute details, is able to read names and new words after 1-2 exposures. For this I have no explanation other than what the Institutes have been saying for decades.

The brain grows by use. The higher the frequency, intensity and duration, the better the results.

I can not say for certain exactly what factors have come together for Lucas to learn at this rate, but I can say for sure that the medical community who dismisses our efforts as futile and takes the position that "Lucas may have developed that way regardless" are blinded by their own agendas. If we had lowered our expectations for Lucas and submerged him in environments which accept certain limitations as fact, he most certainly would not be able to do what he does today ..or has the potential to do tomorrow.

Curcumin

"Recent studies have demonstrated that curcumin has a wide range of beneficial pharmacological effects, including anti-inflammatory [3], antioxidant [4], antiviral [5], antiangiogenic and antitumori- genic [1] effects."

http://www.gotdownsyndrome.net/Jiao_2006_FRBM.pdf

Curcumin is the natural yellow product extracted from the Indian herb turmeric. It is currently used as part of many different protocols for our children that makes it's pure benefits unclear (in my opinion) because it is combined with other non-natural components such as psychotropic drugs.

Curcumin has properties of an iron chelator which is huge in the population of our children who tend to have high iron loads, as Lucas does. Things like cancer and tumor growth need a good supply of iron, it is their feeding source. In fact, the attached article demonstrates the ability to track development of cancerous tumors and other diseases by monitorring iron loads over time. Allowing excess unbound iron in the system will lead to devastating results. 

Curcumin impairs tumor and cancerous cell growth - both of which need iron to grow, in addition it is an antioxidant and free radical scavenger.

Are any of you using curcumin as a supplement? What reasons did you decide to do so?

A Summer Rose

A last minute decision to run an errand - on an unusual day for errand running - led me to a beautiful Summer Rose that I otherwise would have missed. I know it's blossom will be spectacular simply because of the love with which it was being cultivated. This journey has taught me to keep my eyes open for miracles, they are everywhere.

School is Starting (Along with cold and flu season)

Tomorrow is a very exciting day, Lucas has his preschool conference with his teacher and gets to see his room so he's already to start on Tuesday. Noah and Ryan, although they will tell you they are not, can't wait to go back and see everyone they have been missing through the summer. You know - telling stories, hi-fiving, sharing pencils, hanging out in the locker rooms, around the drinking fountain - yeah, you know where I am going with this! There's a reason tissues and antibacterial wipes are on the school supply lists.

Last year was our first full year following our anti-illness plan with stellar results. All the boys made it through unscathed - including Lucas. (Ironically I was the only one who got really sick right around Christmas time - it was fabulous.) Although I am certainly not in a position to recommend any course of treatment, I found that providing the whole family with increased vitamin D, good probiotics, elderberries (powerful antivirals - I boil them down in a touch of water and stir them into yogurt!), natural multivitamins, bioplasm cell salts and krill oil kept the boys on track.

The other component to our strategy was monthly visits to our pediatric chiropractor. A few energy releases later and the kids were clearing any congestion that may have been present. My oldest son woke up with a pretty bad ear infection in January, after seeing our chiropractor the first day he couldn't believe how pain-free he was in the car on the way home. That night he slept soundly, and that was the end of it.

The real evidence for me was the boys bringing it up today - "Hey mom, when are we going to start our plan?" We have all set the goal for a second consecutive year with no illness. None of the boys have been on antibiotics for years, I can't even remember when.

I even practice the old wives tales, I figure if chicken soup helps a cold, perhaps it can help prevent one. Our family eats a variety of organic soups 4-5 days of the week in the winter - mostly because I can make it early in the morning and it's ready whenever someone needs to eat around homework, sports, and meetings. I have become very crafty at adding nutritionally dense ingredients with little resistance from the kiddies - mostly because they have no idea!

My question for you is what strategies do you employ? What "resolutions" do you have for this new school year, and what is your action plan?

I can't wait to hit the ground running - it's going to be a good year!

That Time a Year Again - Please Read - Please Consider!!!!!

http://www.toysrus.com/shop/index.jsp?categoryId=3261680

The new edition of Toys R Us's "Differently Abled Catalog" Is out. Wow, shockingly a child with Down Syndrome is featured on the cover. I can't even blog, as a mother, an occupational therapist, and an equal rights advocate I am outraged. WHY do so many parents think this is good???

The following is a formal post I made, it sums it up. I am seriously considering the impact of involving the media. This is discrimination in it's highest form and the very people responsible think they are making great humanitarian efforts and perpetuating yet another label on our kids as well as promoting a segregationist mentality among the very people - our children's typical peers - we are struggling to achieve equality and acceptance with.

Post:

I am sorry, but as a mother of a child with Down Syndrome and and Occupational Therapist, I find this catalog extremely offensive and inappropriate. I have looked through them since their inception looking for toys which have been adapted for children with special needs and are therefore worthy of a separate catalog. I have found none. The exact same toys that appear in the usual catalogs are there with beautiful children who have yet another label pinned on them and publicized - by a toy store - "differently abled." Are not all children in fact differently abled? Why not include the icons telling what skills each toy works on (the reason we give any toy to any child) in one big catalog and include models representative of all children? How can we stand for a toy store imposing another label on our children? How does that fit in with our mission here? What message does this catalog send to the families and parents of our children's peers who we are struggling to gain acceptance and equality with? Just because "differently abled" sounds nicer than the "R" word, the outcome is the same. Separate and not equal.

Altered Cerebella

Just an interesting thought on an article a friend shared on fb:
http://www.eurekalert.org/pub_releases/2011-08/uocd-rfa082411.php

It states that a researcher found that the brains of children with Down Syndrome have "altered cerebella." The cerebellum is primarily responsible for balance and coordination which are obviously two things with which our children have difficulty. The researcher goes on to state that he studied the eye movements of the children and discovered there is an incoordination in the eye movements as well. He ultimately concluded that there was a disturbance in the "optikinetic" link, but then somehow decided this was related to early Alzheimer markers and a drug trial for Alzheimer medication.

In all of the research the Institutes have done, they stress over again how all children with a brain injury have difficulty with their visual pathways, most notably near point convergence which develops at the midbrain level somewhere around 5 months when the baby begins to crawl and creep; hence our focus on creeping, crawling and cross patterning. If the visual pathway can not accurately assess distance, accomodation, convergent focus etc., how might that faulty information affect the development of the cerebellum? Structure from function?

Anecdotally, the main area of major response to our consistent patterning over the past two months has been coordination and balance. Again, I think these research findings are important, and I am certainly glad they are being done, but how in the world would a drug to slow the advance of alzheimer's affect positive changes in the brains of our children?

Nutritionally Based Thyroid Approach - MUST READ and Forward

Many have asked about forwarding the information I come across, this is by far the best article I have found to forward to practitioners. It outright asks the question why we would supplement thyroid function with a synthetic hormone (synthroid) for life which can pose risks, rather than treat the thyroid through nutritional supplementation that is preventative, effective and poses no long term risk.

Fantastic article!
http://www.healthresearch.com/downsyndromethyroid.htm

Information Regurgitation

As I am diving into metabolic physiology, I thought it may be helpful to pass along information as I learn it.  Turns out, there is a lot of information, but I came across some very interesting correlations.

The Relationship between Thyroid and Mitochondria
This relationship is very interesting and concerning. It seems that The thyroid function is dependent on the efficiency of the mitochondria and the efficiency of the mitochondria is dependent of the health of the thyroid!

Basically:
-Mitochondrial Function (Phosphorylation) is dependent on two processes
1. The citric acid cycle (anaerobic - no oxygen needed)
2. Electron Transport chain (aerobic - oxygen dependent)

-The efficiency of these two cycles is regulation by RESPIRATION

-Respiration is determined by the Basal Metabolic Rate

-The Basal Metabolic Rate is regulated by the THYROID.

If you wish to read the full text:
http://www.ceri.com/mito2.htm

I can't help thinking about all the things I have been questioning about our kids. First of all, our kids tend to have a shallow breathing pattern combined with the phenotypical low tolerance to activity. Even the open mouth breathing, aside from congestion issues, can be a mechanism to increase oxygen intake. In addition, when we began studying Lucas's blood, his levels would dramatically drop as soon as we introduced a physically demanding activity. I mentioned in a previous post that I thought it was interesting that as soon as his Bun/creatine ration went up (a measure of how our kids' muscles eliminate waste), the thyroid level was off. When we provided nutrients in converted forms to take the stress off the mitochondria, the thyroid level returned to normal.

The above article makes the statement that it is a distinct possibility a positive feedback loop exists that healthy function of the thyroid is dependent on efficiency of the mitochondria.

Further- The following abstract
http://www.ncbi.nlm.nih.gov/pubmed/16366737

suggests poor mitochondrial function is responsible for neurodegeneration. (How long have we heard our kids' brains degenerate and fail to form dendritic and synaptic connections?) Further, it is thought that by introducing certain nutrients and antioxidants, neuroREgeneration is possible.

Strikingly, the list of vitamins, nutrients and antioxidants are similar in both theories:
B Group vitamins
Vit. E
Vit. K
ALA
CoQ10 (instead of the common ubiquinone we had to give the converted ubiquinol to make it easier for Lucas's mitochondria to use)
Acetyl-L-Carnitine
Iodine and Selenium

Many of these are in the commercial vitamin therapies for T21 (Nutrivene and Nutrichem).

When Lucas was 6 weeks old, my husband and I traveled to Baltimore to meet with a doctor who researched some of these issues. His opinion was that parents who wait and see will find the predictable problems, introducing this approach then will not yield the results it would have if the child's neurological and metabolic systems were allowed to develop with the supports. That was good advice - I have no way of knowing if it was the metabolic supports or if Lucas would have developed this way without them.

What I do know is that no one in my house can beat him in State and Capital memory! He soundly beat me 11 matches to 2. (Nevermind I am in love with the way he says Lanalulu!)

Naturopathy / Orthomolecular Medicine

If you have followed my blog in the past you know that our path was really defined by a brilliant doctor we were fortunate enough to find, Dr. Mary. She was a developmental pediatrician who almost lost her life to an illness many years ago and healed herself naturally. Because of this, she redefined the way she approached her patients - metabolic balance, natural supplementation and diet instead of chronic illness, herbal and antioxidant supplementation for neurological health and optimal development are a few of the things Dr. Mary taught us. Ironically, insurance wont reimburse a dime for her "alternative treatment" but has no problem paying for maintenance antibiotic therapy, hospitalizations, and conventional treatments that lead to conventional results, but that is another topic for another day.

Today I am devastated because our physician has become very ill with the very problem that almost took her life, so ill in fact that she is considering closing her practice. First and foremost I am deeply concerned for a woman who has spent her life finding ways - real ways - to help our children be well, and pray she finds healing herself. There are many we've met in our journey but none with the true compassion and dedication of Dr. Mary.

I need to find a way to learn and continue our journey until Dr. Mary becomes well. I've learned so much in the past few years, but can't bank my son's future on what I might not know. Finding a naturopath is easy enough, but finding one who is deeply aware of the metabolic differences and consequences of gene mutations of children with T21 is another story. There are many physicians who practice orthomolecular medicine and do work with our kids, but they are usually located elsewhere, have a waiting list, and certainly do not offer the amazing relationship I have with Dr. Mary. I would come across a piece of research, forward it to her, and before I knew it she was calling me or e-mailing me with ideas of how it fit within Lucas's plan. I know, I am asking for a lot.

I need some information fast. First, from my brilliant friends who are finding their way on this path naturally, what types of professionals, if any, are helping you? Does anyone have any experience with an orthomolecular physician? If you are doing blood studies are you asking for scripts or are your practitioners guiding the process?

I am going to begin learning all the things I can based on what I know about Lucas but I can't possibly know every gene mutation and it's metabolic consequence. For the first time since Lucas's birth I am a little fearful, and need information.

Any ideas, suggestions, or experiences would help

Winding Down...or Up?

We spent the day at the County Fair yesterday, it marked the last loved tradition of the summer -my mom always said when the fair rolled into town summer was on it's way out. As I watched my kids spin, drop and roll themselves into oblivion and have a treat or two that is forbidden the other 364 days of the year, a wave washed over me, was it nostalgia? Saddness? Usually this would be the case, but not this year.

This year, I felt excited.

I am excited not only for Noah and Ryan to head back to school and pick up where they left off - they had a wonderful year in school, for Fall sports and predictable schedules, but I am as equally eager to see what Lucas has up his sleeve.

Over the summer I have seen massive changes in him, the patterning - despite what critics (my former self being one of them) may say of the practice - has dramatically changed the way Lucas moves. In two months he went from an immature running pattern to beautiful crosspattern with a little "hop" in his step, his balance went from fair to good, his creeping and crawling are faster, more efficient and more symmetrical...and those are just the observable traits.  It is the less measurable qualities that have equally impressed me like successful risk taking, initiating physical play (that's a nice way of saying tackling his brothers to the ground and wrestling!), making his desires clear, both verbally and nonverbally, and successful introduction of responsibility tasks around the house. Ultimately, yesterday when we did not pattern, Lucas asked many times "Do Monkey?" (his name for patterning).

So, as I am preparing for Lucas's 4th birthday - calling Dr. Mary to get a script for our quarterly blood study, buying some new bits of intelligence (can't wait to introduce dinosaurs, authors and inventors), making new reading materials, and getting excited about the new addition to my house - Lucas's brachiation ladder his daddy is making for his birthday present and starting the brach. program- I am feeling as though I am standing on the brink of an exciting new chapter.

Better yet, I am more excited than ever to see the massive accomplishments my whole family will achieve on the next leg of our journey - together!

 (OK and maybe some haircuts!)

Stop Disability Slurs

I am excited to be a new official advocate for Stop Disability Slurs. If you haven't viewed the fb page, I have included the link. Together we can make a difference in the way the world treats our children. This is a great place to keep up to date on societal and media issues as well as a place to join our ideas for change.

I will be including updates on this blog as well as well.

https://www.facebook.com/stopdisabilityslurs

Why we Can't Have a One-Track Mind

It feels as though I have been caught between two worlds as of late. As any follower of this blog knows my mission has been to redefine the way we look at and treat our children with T21. My sole focus has been on breaking down long held misconceptions (by the medical and education communities) about our children's ability to develop and learn and find ways to intervene before health issues and delay evidence themselves. Many of you are doing the same thing and having great success, but I think our single-mindednes has let something drop from our radar.

I have always been of the opinion that focusing on Lucas health and development will ensure his participation in the "typical" world and thus far it has. In fact, he does many things his typical peers can not. When we began the IAHP program I even struggled with the idea of pulling his out of preschool and purely working the program but eventually decided that two hours a day for two days a week was necessary, not for socialization and exposure of my son, but for socialization and exposure for the children and families who are his peers. It is not enough for me to know what my son is capable of, I accept and love him regardless. The world in which he must someday find his way needs to know.

Lately I have found an inspiring grass-roots effort called Stop Disability Slurs | Do You Have the Courage? http://t.co/EFaoKvDThe focus of this group is to stop the discrimination and segregation of our children
starting with the way they are portrayed in the media and in society at large. How many times have we as parents been watching a movie and heard the word "retard" and have that feeling in our stomachs, knowing we have beautiful, brilliant children at home who can do things the children of those throwing the word around can not? Knowing our children who are sensitive and compassionate to everyone around them are being targeted as a punch line? 

Now, think back to before your child was born. Did you think twice about the word when you heard someone say it? In today's world of "political correctness" many in society who do not have a child with T21 think that is what this is about. It is not. Every movie, every book, every TV show, ad, comedy routine, and dinner party that casually drops the word...or worse yet uses it as a rouse to get laughs, degrades our children. And those who don't know better, think that having such a child is a tragedy. 

Back to our children. If we exclude them from all typical environments in our quest to create ultimate learning environments, what will happen when they magically show up in the class in Kindergarten or first grade? Our kids will be fine, they will do what we know they can do...read, reach out to make friends, want to join in and treat others with respect. What about the other kids in the class - and their families? What will the reaction be when we call for an after school play date? or a sleepover when they're older? 

If our focus does not include societal change, we've done nothing. Previous posts have made mention of this, the one called "Call to Action" was by far on of the most popular posts I've made, but it seems as though we are at a cross-roads. The ante has been upped. In six weeks time comedic routines, "enlightened" magazines and movies have decided the word "retard" no longer packs the punch it once did. "Down Syndrome" has been turned into and adjective, a slur and an unflattering fashion term. Little by little our children being pushed farther and farther out of society, both figuratively and literally (see post on eugenics.)

Our children are beautiful, their faces need to be seen. Our children are brilliant, their skills need to be seen. Our children's generation will impact society, their compassion and fairness needs to be seen. Just as we must NEVER lower our expectations for our children, we must RAISE society's expectations of them. 

Please join this effort. Our desire to change our children's ability to succeed in the world, and the necessity to change the world for our children are not mutually exclusive goals. One without the other is not success. 

Another man's blog

I copied the entire entry because it deserves to be read, to be said, to be demanded. Kudos to this new hero of mine.

August 9, 2011

Just a Word: The Change-Up Edition

Well. Let it never be said that the entertainment world isn't committed to providing material to blog about.

From "The Change-Up", from Universal Pictures

Mitch Planko (Ryan Reynolds), about his friend's twin babies: "Why aren't they talking? Are they retarded? This one looks a little Downsy."

Let's dispense, for the moment, with the usual debate about freedom of speech or how comedy supposedly works or whether or not anyone needs to lighten up or pull a stick out of their butt. Instead, let's write a story. We can even pretend it's fiction.

Imagine a parent with a child who has Down syndrome. I actually have one in mind, a strong and positive writer whom I've become friends with over the past few years. But you probably have your own friends or acquaintances you can imagine.

So let's say it's a mom, one who spends her days, her years, taking care of a child, a very special child in every sense of the word. She loves this child the way most special needs parents love our children, which is to say, with equal parts gentleness and ferocity. She understands what the lesser of her fellow citizens of this rough world thinks of her kid when they see the evidence of disability stamped on a child's face but don't bother to look beyond. Perhaps she knows better than most how this attitude diminishes the shallow observer, not her child. Maybe she's found that peace.

Let's imagine that this mom likes comedies, and not just polite ones, either. Like most special needs parents, she probably engages in quite a bit of dark humor herself, the jokes and remarks made to her spouse or other special needs parents and no one else. She appreciates edgy humor, and she liked The Hangover, so when a new movie by the same writer comes out, she decides to take a few hours out of her weekend and go see it.

Perhaps her husband watches her child for her while she's at the movie theater. It would be nice if they could go together, but that's a luxury that's not afforded to every special needs family. If she's single (as so many special needs parents are; about 75% get divorced, according to a recent study), she's had to find a babysitter. This simple act for a typical family is one fraught with anxiety for the special needs parent. Qualified babysitters are hard to find; trust is even more difficult to build. Perhaps a member of her family will watch her child, but that's not a given, either. Many special needs parents have family members who don't get it, who have declined to watch our kids or who have made statements that we'd expect from fussy old ladies at the grocery store. (For me, it's always the old ladies, and it's always at the store.) So a family babysitter isn't a given, either.

But however it happens, our imaginary mom finds a way to go see The Change-Up. She's there, sitting in the dark, laughing at the movie, enjoying herself and pushing down the guilt, that feeling of abandonment that we feel when we dare to spend time doing something for ourselves. Perfectly reasonable, this time away, yet it's hard not to feel as if we've left our child unprotected somehow.

That feeling of leaving her child undefended suddenly swells when she hears it. "This one looks a little Downsy." Our imaginary mom is suddenly confronted with a room full of people, laughing right along with famous faces on the screen, in a multi-million dollar production worked on by thousands of people, approved by studio executives, writers, actors. All those cinema professionals, and none of them, NOT ONE, ever said "You know, we're making fun of purely innocent, absolutely blameless people here. We're making a shitty joke about people with disabilities, people who are brothers and sisters and sons and daughters of the moviegoers who are going to pay money to see this film. That strikes me as a dick move. Maybe we shouldn't do this."

Because this simple recognition of the absence of basic human dignity has not occurred to any of the decision-makers of this giant Hollywood production, our imagined mother sits alone in the dark, and she understands all over again, as if she could ever really forget, that a large segment of society, of the people she walks with and works with and attends church with right alongside her child, this chunk of society finds humor in her child's disability. They think her family's pain is appropriate as a punchline. This mom was right here with them, and does that make her complicit? She thinks maybe it does. Maybe she gets up and leaves the theater in the middle of the movie. Maybe she goes home to her child, feeling more than ever that her place is here, not out there with this great invisible THEM, the ones who will always place her and her child and her family apart.

But if people laughed, I suppose it works out okay when you do the studio executive math.

Again, I'm not asking you not to engage in this kind of humor. It's your soul, after all. You're the one who has to figure out what you're willing to do for a laugh, to fit in with the cool kids, and still sleep at night. But here's what I would like for you to do, if you're asking, which you're probably not.

If I ask you to close your eyes and imagine the kind of person who would casually use the word "nigger" to describe another human being, there might be some variation of the character that any one of you would build in your imagination, but I seriously doubt it would be someone you'd admire. I don't think you'd create the mental image of a person you'd trust your kids with, and I certainly don't think you'd imagine yourself.

When the greater part of society reaches the point where that exercise of the imagination would have the same result with the word "retard", we'll be on our way. That's what I'd like. It really is exactly that simple.

And "downsy"? That's vile. If you laughed at that, please go live in a hut somewhere, far far away from actual human people.