Link to Follow

I just wanted to pass along a link to another blog that is very worth following...there are more of us than we know!
http://downsyndromeupupupandaway.blogspot.com

Call to Action

As with every other part of our journey, there is a constant pull of conventional ideas. I was approached by a friend of mine who wanted to know if I was signing Lucas up for a popular program in the area for teaching ice skating to children with special needs, apparently she is an instructor. I said, without thinking, that I had already made plans for him to do the community learn to skate program my other boys had done. The conversation ended shortly thereafter, but it left me thinking, did she see something in Lucas that would make him inappropriate for the community class? He has the proper gross motor skills, attention span and energy of a typical three and a half year old, nothing visibly would rule him out. As far as his ability to understand, I truly think it is far better than my other boys at his age, just because we have focused on it for so long. Then suddenly I figured it out.

"Down Syndrome" is nothing more than a label, an inaccurate, segregating, discriminating, demeaning label with no footing in science, biology or medicine. Because the existence of an extra chromosome produced some assumed eventualities over 100 years ago, a doctor (who thought the condition was a result of incomplete development in utero and therefore resulted in a "mongoloid" child - remember those from mongolia were not well regarded at the turn of the century), he decided to take these bright children and give them a syndrome named after himself who admittedly knew nothing about it. Now, some 115 years later, we allow this label to define our children. This outdated label is just as destructive as any racial slur or derogatory ethnic name, yet it is so common everyone thinks it is an actual diagnosis.

The fact that my son understands and does things far beyond his chronological age is lost on this friend of mine who only knows the label. If this is true at three and a half, what will it be at 13? 23? 33? I can not wait - and I suspect you can not either - to see what unfolds. Action must be taken and a new awareness spread. Since I began this journey I have met a small number of parents around the world who are having giant success intervening before delay occurs. There is a movement, and I am pretty sure anyone who reads this is part of it - that is how we've found each other. We have witnessed the uprising of the parents of children with autism, who time and time again fought traditional thought with proof they had made their children well. I'm sure that community of parents will tell you their methods are still far from commonly accepted, but together their voices are being heard, and we have all had our perceptions changed of children with autism because of that message.

At the risk of drawing ire from the very people I wish to inspire, may I suggest it is time to stop propping our children up as the poster kids for disability? When a company wishes to sell a class, or a book, or an item to parents of kids with special needs, do they typically choose a child with autism? Of course not, because children with autism look like every other child. Even children with physical disabilities are not always chosen first because most people understand that a physical disability does not mean the child has an intellectual one as well. But they love our children. Our children look special, and when the public sees their features on a product, they know exactly who it is for, and more importantly, who it is not for.

I have a better word for that, it's called discrimination. It is no different that segregating any group of people based on stereotype. I'm tired of hearing the "but kids with Down Syndrome are_____, "fill in the blank; special, sweet, friendly, loving, stubborn, delayed, on and on. When we as parents allow our kids to be propped up as the symbol of disability, the symbol of those who can never hope to compete in any arena other than a "special" one, we make it okay. It is not okay. We don't get up at the crack of dawn, drain our brains, bodies, souls, and bank accounts because we think it's okay. My child will succeed in the same world as his brothers, he will not just "get along" he will lead.

That is why I am writing this - to you, other parents who feel the successes and the intuition that the past 115 years got it wrong and we are positioned at precisely the correct time to make it right. Our children can achieve unbelievable things and if they enter a world where they are prejudged, we've done nothing.

How can we be heard? We educate by example everyday, but how do we organize our voices? As stretched as my husband and I are with all we've committed to Lucas and our other boys, it is becoming apparent that it wont be enough. It is not enough for Lucas to be included, he must be seen as an equal. The parents in the autism awareness campaigns had one huge advantage, they banded together. Please pass this to any groups you may be a part of, feel free to contact me directly or via the comments at the end of the blog with ideas or opportunities. The time is now.

I can't help but think about all the stories this time of year about a young man with T21 who was crowned prom king (Do they publish stories of all prom kings?) or dragged around filthy towels for the basketball team all four years of high school, and then at the final game of the season when the team is up by 30 points, they put him in for one play - after they arranged with the other team that they would not oppose him. My heart breaks for that young man, for his parents and for my son. Worse yet, the students who organized the play did it genuinely and charitably. Charity is for those who need it. Our children will not.

Where do we go from here?

Laurette Janak

I Copied the following exchange in full because putting comments in context on this subject is critical. Let me just say in my corner of the universe, there is a warrior named Laurette Janak. She is a brilliant advocate for her daughter (and all of our children). She is more knowledgeable than most physicians and has worked with major companies on Targeted Nutrition Interventions and metabolic health issues. The following was an opinion expressed by Laurette in a forum dedicated to the alarming rise in autism. Her opinion was not posted by the moderator. I personally think  whether your child with T21 has autism or not (and alarmingly 18% do!), it is a most important read.

We are barraged by information in the media on topics of vaccines, nutrition, and children's health. As I have found time and time again, the coverage is typically based on a very superficial view of the subject. The following is truly important to know. I would encourage you to Google Laurette Janak - she has unearthed critical pieces to our children's health. 

Comment to Larry Kirwan in Irish Echo Online

By Laurette Janak

On May 18^th an article appeared in the Irish Echo Online titled: “The troubling rise in Autism” by Larry Kirwan (HERE). Larry relays his story of having a sister with Down syndrome stating that at least they knew the reason for her having this disorder; genetics. The article then goes on to question the rise in autism. Knowing that children with Down syndrome have a vastly increased occurrence of autism, I thought I might be able to contribute some insight into  “The troubling rise in Autism”.  Thus, I took the time to compose a comment and one day later on May 19^th at 8:56 AM EST, I submitted my comment. Today is May 23rd and my comment is still awaiting moderation. I certainly see the need to moderate comments to eliminate blatantly incorrect information, rudeness or superfluous information that adds nothing to the topic of discussion, however; my facts are derived directly from published medical literature and I definitely was not being rude.

I looked up the author, Larry Kirwan, to see what association he might have that brings him to the topic of autism in the first place. All I could find was that he appeared to have been an entertainer for an Autism Speaks fundraiser. So what reason could Larry have for not posting my comment? I hate to feel like I wasted my time composing comments that I actually thought might be helpful when investigating one of the possible contributors to “The troubling rise in Autism”.  Maybe the audience he writes for is not interested in such clues?

So for those of you who are genuinely interested in “The troubling rise in Autism” here is what I posted to Larry. You have my permission to share this far and wide with anyone interested in shedding light on autism from a different perspective.

      Laurette Janak Your comment is awaiting moderation.

      May 19, 2011 at 8:56 am

      
Larry,

              Thank you for your article on the troubling rise in autism. You state that, “it’s time we faced up to the fact that we may share responsibility for this upsurge in autism”. I couldn’t agree more and would like to add a few pieces to your mention of Down syndrome (DS) that supports your “shared responsibility” notion. A current study by DiGuiseppi et a. 2010 has put the comorbidity of DS and ASD at an alarming 18.2%. Brain MRIs of children with DS were performed by Carter et al. 2008 and it was determined that the MRIs could distinguish between those children with just DS and those that had a comorbid autism diagnosis. Thus, it is not just a case of the symptoms of

autism being part of what is normally seen in DS. What could be accounting for this increased susceptibility in this segment of the population, which as you know, is a very loving and social group of children? In November 2007, the U. S. government conceded a vaccine-autism case in the Court of Federal Claims saying that vaccinations aggravated an underlying mitochondrial disorder resulting in features of autism. Are you aware that the literature documents mitochondrial dysfunction in children with DS, which begins even before they are born? You said that the role of inoculations has been “ruled out” yet I can find no study on how such vaccinations may impact children with DS all of whom have mitochondrial dysfunction. The literature is very clear in showing that children with DS have immune abnormalities yet we know relatively little about how this might impact their response to vaccination other than the documented fact that they fail to respond with protective titers to a number of vaccines. It is well established that children with DS suffer from increased oxidative stress as a result of their extra copies of genes associated with having a diagnosis of DS. One of the consequences of this excessive oxidative stress is a low level of a molecule called glutathione. It is precisely this molecule, which has long been known to offer protection from the toxicity of mercury. As you are probably aware, mercury (thimerosal) has been a component in many vaccines and continues to be in the flu vaccine. The work of Ueha-Ishibashit et al. 2004 showed that thimerosal decreases glutathione and that the toxicity of thimerosal was, “greatly augmented when the cells suffered oxidative stress”. With respect to oxidative stress, the paper by Ueha-Ishibashit mirrors what is occurring in DS children. Furthermore, in an animal model of DS (Stabel-Burow et al. 1997) it has been shown that lowering glutathione below a certain threshold, “contributes to cell loss and neurodegneration in Down syndrome.” In non-scientific terms these studies indicate that DS cells would be more prone to the toxicity of thimerosal. As such, one cannot rule out the possibility that this genetically different set of children may have autism triggered upon exposure to thirmerosal. If you are inclined to say that thimerosal has been removed from most childhood vaccines, then please know that the aluminum used as an adjuvant in many currently used vaccines also depletes glutathione therefore, is not exempt from the possibility of neurodegenration in this population of children. There are other conditions that warrant investigation in susceptible subgroups of children but time and space do not permit me to go into these here. By ignoring and failing to investigate entire subgroups of the population, I completely agree with you that, “it is time we faced up to the fact that we share responsibility for this upsurge in autism.”

      Laurette Janak (May 19, 2011)

Laurette Janak is mother of a child with Down Syndrom and ASD and a tireless advocate for children's health.

Here she is...living, breathing, beautiful proof!!!!

There is nothing I can say except work hard today for many unbelievably beautiful tomorrows! Cheers to you all!!!!! (Especially my Warrior Sister!)

http://www.veras.org.br/video-ana-carol.asp?Area=fotos

Research Article VERY Interesting, or is it?

Wow, 2 posts in one day!

Experiment sheds new light on Down syndrome www.med.ubc.ca

This research article tested several adults with T21 and several without. Simply put, they had each person press a button with their right index finder while a functional scan of their brain was being done. In all of the non T21 world, we press a button with our Right index finger and the corresponding control center in the left side of the brain lights up. In people with T21, all different parts of their brains lit up representing disorganized brain communication.

First of all I have theories as to why this is, first as those of us who refuse to believe the convention treatment methods have long contended, an extra chromosome means the brain needs more antioxidants, more stimulation, more opportunity, more everything to...wait for it....ORGANIZE! Secondly, the brain is magnificently efficient, so if brain A needs to move the finger but there is damage in the way, it will find a different route. Brain B will find it's own path around the damage, etc.  This results in ten different brains lighting up ten different pathways to move the Right index finger.

The biggest thing I've learned from the Institutes is that all traditional methods of treating fine motor problems with handwriting practice, poor balance with practicing balance (poorly), speech apraxia with an hours worth of "say "duck," "d,d,d - uck," say "duck" (No offense to my many speech therapy friends but, seriously you wonder why the kid has behavior problems in sessions?) is useless. You will have very poor outcomes (as is sadly well documented in our kids) by focusing on symptoms. Whether it be a car accident, drowning, or chromosomal abnormality the damage in in the brain. This contention we have that we can change the brain by having a child do something over and over again is insane. They will just do it over and over again poorly, and guess what organization gets reinforced?

Increasing hemispheric communication through A LOT of complex visual stimulation (reading very, very young), A LOT of fact storage and retrieval, through A LOT of auditory stimulation (Tomatis therapy, high violin content music, contrast silence and noise, etc), through A LOT of vestibular stimulation (swinging, hanging, PASSIVE patterning), Through A LOT of metabolic support such as increased mitochondrial health and proportionately increased antioxidants in converted form (see earlier note about inefficient mitochondrial conversion of things like folic acid, CoQ10, etc) that directly impact the brain's ability to form dendrites and communicate - you are treating the brain. When your 5 year old is doing gymnastics and speaking several languages, do you really care what pathways in his brain is lighting up? This reasearch, although positive from the standpoint of medical interest, is - as a brilliant friend of mine says - "Nero fiddling while Rome Burns."

My A-Ha Moment

I have been spending a lot of time lately, not only with Lucas on his program, but putting materials together for him. His reading and knowledge programs take us from Pyotor Llyich Tchaikovsky, to Western Lowland Gorillas, to the Presidents of the US, major organs of the body and now, famous artists, to name just a few. I am constantly amazed by his hunger for this information, how he enjoys these programs, and beyond that, the longer we are doing it, the quicker he learns....which means I need a lot more material quicker!

I was at the store today while Lucas was at pre-school, and there was a mom there with her "normal" little boy who must have been close to kindergarten age. Within the first few moments I knew the little boy's first, middle and last name, because his mom said it about 5 times. He already had a cast on his left forearm, yet undeterred was trying to climb up a display. After several reminders not to do that, the little boy threw a tantrum and started yelling while he picked up some items that were on the floor and started throwing them about.

After I had completed my shopping, I found myself behind this Mother-son duo at the check out. There were lighted signs over the register to indicate what number isle it was, and the little boy looked up and said "Mom, that's a 5." You seriously would have thought the kid cured cancer, his mother was beside herself with joy telling him what a "genius" he was because he in fact identified the number 5.

I began to get lost in the lists of things I was told to expect from my son who was not "normal," and  if given the choice many would not want. Behavior problems, difficulty following directions, slow learning, and poor memory were just a few. I began to snicker, not because this mom was having a hard time with her little boy, but because my fear (back then) of always looking at other "normal" children and comparing Lucas had become a reality. I do look, and I do compare, and my son is not only keeping up with his well peers, but he is light years beyond them in many ways.

It occurred to me that this little boy's antics were created from a burning desire to learn and do, but his experiences were limited by his mom who was just thrilled to see he'd learned the number 5. How true for us - how absolutely, positively destructive our insecurities are when they hold us back from introducing things our children are starving to know.

As I got Lucas out of the tub a few nights ago, our "forearm connected to the elbow, elbow connected to the arm bone...etc) song morphed into a fascinating game of show me your humerus, where's your tibia, Lucas...show me your metacarpal phalangeal joint. Lucas got them all right..and more, and giggles because the words were funny....and as he sat there acing the content of my first college anatomy course it occurred to me that "keeping up with" hasn't been our goal for a very long time.

A New Adventure

One of the very first books I read after Lucas was born was "What to do About Your Brain Injured Child" by Glenn Doman of The Institutes for the Achievement of Human Potential. I have been so grateful for that book over the past three years, because it allowed me to see things from a different perspective. It reinforced the things I secretly believed and has been a source of information and inspiration for everything we have done with Lucas.

When Lucas was born, I had a 5 and 3 year old at home, I didn't think I could go to the course and apply it purely from a time stand point. Instead I chose what I believed to be the most important aspects of the program. I immediately read all of the books on how to teach your baby to read, do math, and learn encyclopedic knowledge. I believed the cognitive stimulation was of primary importance. As for the physical, I put my OT hat on and modified and adapted everyday's activities. Lucas spent his day "playing" with those who loved him the most. Who knows whether it was the specifically designed activities he was completing or the simple fact he was believed in and adored, but he thrived and succeeded at things I would have never believed possible.

Our journey has brought people into our lives that I can't imagine being without. Just about a year ago I found Kristen Morrison from Naturally Better Kids in Australia while I was looking for more information on natural approaches to health and wellness for Lucas. About a month ago we finally met in NY City - the Morrisons on their way to the Institutes, and us knowing we were beginning a new chapter in our story. As we walked through Central Park and the streets of NY with our boys running and playing as though they've been friends for years and the day flying by far too quickly, I realized everything was coming full circle. The very book that changed the course of our lives three years before,  the Institutes that I've considered hundreds of times, and now dear friends who have a wonderfully gifted son, were all coming together...there was no reason I could think of to delay going there myself.

Perhaps it's just the right time or maybe it's the admiration I have for people who are willing to spend a small fortune, fly to the other end of the world and literally dismiss every excuse as pale in comparison to an opportunity for their son. The program is time consuming and demanding, but I couldn't help but remember all those years I spent 50-60 hours a week treating patients, I thought nothing of cramming in 20 treatments a day - the time is now. I realized my reasons for not doing it sooner wasn't that I was afraid my son couldn't do it, I was afraid I couldn't.

I am leaving for the Institutes next Sunday and when I come back, we'll figure it out together!