The Crossroad?

At the Biomed's office today, I learned many things I didn't know. This information along with older research I had questioned all came together, and now I need your input.

First the info:

1. Bedwetting is different than continence during the day. It is regulated by a hormone secreted by the pituitary gland and only when the gland has produced a sufficient level can night time continence occur.

2. Sociability, including passivity, "quiet nature" etc., is regulated by a hormone secreted in the posterior part of the pituitary gland.

3. Thyroid function is controlled by a hormone secreted by the anterior part of the pituitary gland.

(See where I'm going with this yet?....Wait, there's more)

4. Regulation of height and weight.....pituitary gland

Do problems with the above listed functions sound like anyone we know?

The pituitary gland sits atop the hard palate of the mouth in the sell turcica. (Does anyone we know have a small mouth and a high or narrow palate?)

OK...

Dr. Weston Price's groundbreaking research which studied Native peoples who ate a nutrient dense diet revealed among other things, they had superior structure. These peoples were tall, physically superior (and beautiful), had large bone structures, and were of superior health and intelligence. The majority of his research focused on diet and how the Native american peoples ate. It wasn't until the Europeans with their wealth brought refined flours and processed foods to the Americas that structures began to change. Shorter stature, heavier, smaller bone structure, etc.

Dr. Price went on to study fascinating things, but none more so than the hard palates of people with Down Syndrome. If you click on the following link, you can read a fascinating article, and right in the middle of it you will find a 6-month photo collection of a young man who has extremely typical features of Down Syndrome and was treated with an orthodontic expander. The visual change itself is astonishing, but beside that, the young man grew and experienced a significant increase in measurable intelligence to name just a few.

http://www.westonaprice.org/dentistry/from-attention-deficit-to-sleep-apnea

Some other issues Dr. Price attributed to a small hard palate with a narrow or high vault was sleep apnea, chronic respiratory infections, and decreased intelligence.

Sound like anyone we know?

So, prior to connecting all of these dots, I had read about and was impressed with the idea of a dental expander. It falls under the category of extremely little risk for potentially high reward which exactly the kind of thing I like.  The thing was, I kept thinking about the way it would affect speech production,
and then of course there is the compliance issue, all of these things made me think we should wait until he was older.

Today, I've had an epiphany. My middle son Ryan is currently undergoing dental expansion for the usual orthodontic reasons...his mouth is too small for his adult teeth to come in properly. His first expander will be in for 34 days. 34 turns. The outcome? over .5"!!!

Could I deal with a nightly battle for 34 nights... could I accept poor articulation while the expander is in, all tolled about 2 months...all for a significant amount of room for the pituitary gland to function properly? You bet.

I am not interested in waiting until adult teeth come in, especially since expanding now will increase the likelihood they will come in appropriately. Why not do it now?

If you have any insight, experience, or ideas, I would love to hear them. This is the part of the journey that is most exciting. A few seemingly unconnected symptoms, one conversation that ties all of them to one origin, and a plan (and of course an orthodontist willing to go along with it, which I happen to have!)

Guess Who's Turning 5?

How in the World has it been 5 Years?

Lucas's official birthday is August 30th, but who are we kidding, the celebration has already started?!

Five years ago I had a brand new baby and way more questions than I had answers. I remember thinking that if I could only fast forward a few years and get confirmation that we were on the right path I could relax...just a little. 

Today I feel like we have indeed fast-forwarded, of course not in a straight path...more of a winding maze that has taken us through many traditional and "alternative" approaches in areas of health, development, and education.

We've embraced people across the globe that have inspired us and become our family, indeed this journey has brought people into our lives that we certainly could never live without. 

Today, I no longer worry about the "if's" I concern myself with the "how's." I know my son will achieve great things - it began 5 years ago, and we're just getting started! 

"Ooooh Daddy! Boat!!" was Lucas's comment when Sean bought our wave runner. Of course I couldn't help myself, I responded "Yes Lucas, HAPPY BIRTHDAY!" 

Because you know, it's reasonable for a 5 year old to think they got a "boat" for their birthday. 

So, three and a half years ago when we started making hundreds of reading cards to stimulate the visual pathway for word recognition, I admittedly wondered if it was an exercise in futility. As Lucas got older and could read the sight words, I worried that it was his exceptional visual memory and that it wouldn't necessarily translate to "real reading." Somewhere in the past few months, Lucas has begun to "sound out" unfamiliar words even though I had never taught phonetics. I guess IAHP was right, give enough exposure to words and kids will intuit the rules. Lucas loves to read, and I love to listen to him!

Children with Down Syndrome have low tolerance to activity, poor cross-pattern integration, postural insecurity, decreased strength, decreased endurance, and are averse to risk taking. 

Truth be told, this is the biggest problem we have right now, Lucas loves to risk-take, including running, climbing, jumping - A LOT, anywhere...grocery store, in the water, in the street, etc. Working on judgement is definitely a task for this year.

I used to worry about the fact that Noah was 6 years older than Lucas, what kind of a relationship would they have? Would Noah resent having a brother with DS? Would having a child with DS burden our family and his brothers?

How would our family be changed by this child? Is it going to be a hard road? A burden?

What will our "new normal" (as the "special needs" literature likes to call it) look like?

We have spent countless hours contemplating all of this over the past 5 years.

But it was all for naught. Quite simply, Lucas completed us, not because he brings some super "special" quality to us, or because having a child with DS changed us, but rather because he is Lucas...one of the three most extraordinary 5 year olds I have ever known and I can't imagine my life without him!

Happy Birthday Lucas!

All My Love,

Mom

He Who Teaches Me

I've done quite a bit of thinking over the past week. My last blog was a result of a lot frustration - it wasn't because of my son, it was really about having to face people exactly like my former self. People who believe they can predict the future based on the past, those who were educated and trained in environments where the best they can offer is an address to delay, and professionals who think parents embellish what their child can do to buffer their own egos. 

If I could only show those people at the table, all new and expectant moms on this journey, and all of society what my son has achieved in 4 short years, they might begin to understand. I wouldn't talk about developmental skills, physical abilities, or even cognitive achievements (as impressive as they are), rather I would start by explaining how this small boy whom I was told would ask so much, has singlehandedly changed the course of our lives. 

Lucas should be named honorary Life Coach because he has created change in every area of our life. We all eat well - it's hard to go through a drive through when you know the stuff in the food could literally hurt Lucas's brain and body. I'm learning to like running - because I like being alongside Lucas when he runs. It's kind of hard to sit on your ass complaining about how difficult it is when Lucas never says no, even when it's raining and I want him to. It's hard not to be inspired by a 4 year old who doesn't know he isn't supposed to be healthy or strong enough to do the things he does. It's hard not to be awestruck when Noah starts lacing up his sneakers just to go with us in the evening.

It's hard to find an adequate excuse for not finishing things, when I spend my days watching Lucas work until he does. You find yourself thinking twice about judging another person, or saying something you can never take back because Lucas's main concern is ensuring everyone is happy. 


It's impossible to let fear get in the way when I watch Lucas fearlessly make new friends at the park, or introduce himself, or participate groups. You find little tolerance for the people who would try to bring Lucas down - the pessimists, the cynics - those who tell you to look for plateaus, look for behavior problems, and look for challenges - they don't see what Lucas is trying to show them.

You learn quickly not to care what others think when it comes to the one person who trusts you most. You find your voice and are not afraid to use it.

Some may look in and think our days are hard, that being at home and "working" with Lucas is a labor. The truth is, there isn't anyone I would rather laugh, bike, run, play games, crawl around, sing, and learn with. It's laughable to hear people say Lucas's ability to learn will be limited when I have been forced to learn thousands of things I never knew just to keep up with him!

I am Lucas's mother first and foremost but I enjoy or days more than anything. I marvel at how much Lucas does, how much fun we have, and how I instinctively know how to teach him.


I know for certain he motivates me more than I could ever motivate him and the one person who I was told would make life less perfect is the exact one needed to fix everything that was wrong before he became part of it.

I am certain all the hockey greats wear their helmets for a potty break!

Those Who Would Like to Teach My Son

Above Photo of brilliant child! :)

It has taken me two days to write this blog. I still can't believe what transpired at the CSE meeting for Lucas. At least I am to the point where I can find the humor in it. The wine has helped.

Here in NYS, a child needing services is followed by the county's Early Intervention Program from birth - age 3. At that time, the services transition to The Committee on Preschool Education (CPSE) and the county shifts the responsibility of services to the home school district. When the child turns 5, services shift again to the home school and CSE takes over. The child must start kindergarten in order to receive therapy services and if the parents decide the child is not ready, they must then drive the child back and forth to the school to receive them. This is where we find ourselves as Lucas turns 5 in August.


I have already sat through the last CPSE meeting where the therapists who have worked with Lucas reported that his progress is outstanding. Physical therapy has been coming only on a monthly basis to consult with us and is shocked at the progress each month because of our physical program (despite the lack of direct PT services). Our OT, having found Lucas's adaptive and fine motor skills to be age appropriate - an in many cases above age appropriate - focuses on a handwriting program that utilizes his wonderful reading and spelling skills. Speech therapy has been coming out twice a week and has also morphed according to Lucas's unique set of skills. The Speech therapist gives Lucas "Reading Homework" which is books that he is to read, talk about and "report" to her at the next session. 


Everyone of these sessions is tailored exactly to who Lucas is and if their report of his skills went to committee without the diagnosis listed, they would probably decide to test him to figure out exactly where he fit because his academic skills are well beyond a kindergarten level. 


With all of this in mind, I headed into the CSE meeting on Monday. Naively believing there was no discussion to be had because I am not sending Lucas to kindergarten, we will be continuing our program and if his speech is not at peer level next year I will apply to the district to homeschool. I thought the meeting was a formality. 


The people who "know better" apparently thought differently.


I went to the meeting with the latest round of reports from the therapists, and more importantly myself, to give an accurate picture of Lucas's development to the group which consisted of a psychologist, special education teacher, PT, OT, ST, school principal, and the school district coordinator of services. None of which have ever met Lucas. 


Cue Amusement.


When I finished talking (and they apparently were done humoring me), the projector screen lit up an on it was Lucas's IEP (Individualized Education Plan) for next year.  I knew they had to put one together - this is the part where I could use the wine. 


 The Special Education teacher began by saying he would be placed in a supported classroom where there is a greater staff to student ratio. I cut her off - "Why?" I asked. "Because that is the classroom that is most supportive of children with learning disabilities," she said annoyed to have been interrupted. Silence.  "What learning disability?" I pressed. Silence. Paper shuffling. "Are you assuming he has a learning disability because of his diagnosis?" I insisted. Silence. 


The psychologist came to her rescue, "No of course not, this is simply the classroom that has built in aides to assist with transitions and management of routine." Cut her off -"Why would Lucas need that?" I asked, "Did you not read the report from the preschool he had attended that said he did all of those things independently?" Silence. Paper shuffling.


I smiled, "It doesn't matter, he isn't going to kindergarten next year anyway." 


The point at which I began to really wonder who exactly had the learning disability was when the coordinator said, we should really have had the school nurse be part of this committee. Beyond annoyed, I cut her off too, "Why? I just reported that Lucas has not been sick in over 2 years." (Minus the nasty stomach flu that killed us all but she didn't need to know about that!) 


"Because of his respiratory problems," she said - "You just reported that you work on them daily."


"No, (you freaking idiot) I don't work to remedy a problem, I work to build respiratory excellence, that is why he runs, that is why he is never sick, that is why he learns easily." I snapped.


Paper Shuffling - and the dawn.


The Special Education Teacher (?) was not about to let it go.  "Mrs. Spiesz, according to the standardized test results I have in my hand, your son has a significant learning disability, severe communication problems, and is not yet even able to run."


-sidebar- VERY PISSED OFF NOW - because apparently I am a liar.


"What evaluation are you looking at?" I demanded. And then it dawned on me.


The regulations state that each child receiving services must be evaluated every three years. His first set of evaluations were done before he aged out of EI - WHEN HE WAS 2!!!!! He isn't due for the next evaluation until after he turns 5.


Not caring I now started to laugh. In the meeting. Out loud. "You all sat down and wrote an educational plan for kindergarten based on a standardized evaluation from when he was 2?"


Dead Silence now.


The answer was yes they did. They did not contact his therapists, they disregarded the CPSE reviews because those were not "standardized" and chose the most appropriate method of planning was to use tests done when Lucas was 2. Plus that allowed them to give him an IEP and put him in the supported classroom where Lucas would bring in some cash from New York State.


I'm pretty sure I wouldn't send a dog to them to be trained, let alone my brilliant son who loves to learn and be independent.


I can't help but feel for other parents too, many of which believe their child's best chance is to be taught by people who know better than they how to teach their child. These people are not interested in teaching Lucas. He was number 121 on their roster and had "Down Syndrome." Their plans for him were written long before they ever thought about meeting him.


The meeting did not end well either, I had done some homework and found out that the school historically attempts to "educate" children with T21 until middle school, where they of course see a "plateau" and decide a 12:1:1 classroom is best. I let them know I was aware of their outcomes and had loftier goals for Lucas. I am not surprised children "plateau" in this system. I am not surprised that children who "graduate" from this system end up achieving far less than their full potential. 

Acetyl L-Carnitine, Iodarol, and and Exciting New Study

I Love this Picture!!!

Acetyl L-Carninitne is an amino acid that has neuroprotective properties. It is part of the vitamin therapy blend we have used for Lucas, but it wasn't until today that I learned this amino acid has some impressive research behind it - and the measly 12.5 mg in the vitamin therapy blend is woefully inadequate.

Acetyl L-Carnitine effectively does 3 things: breaks the blood brain barrier to positively affect levels of acetylcholine (essential neurotransmitter), keeps the mitochondria functioning optimally, and last but certainly not least, actually regenerates neurons damaged from free radicals and oxidative stress.

There is a ton of research going on - even in traditional places of science such as the University of California at Berkeley - that is showing because this amino acid is so effective at reducing oxidative stress and transporting fatty acids to the mitochondria, it can slow and even reverse signs of the aging brain. Further, it has been found to delay onset and slow progression of Alzheimer's.

Ironically, the area of the brain most closely studied for it's response to Acetyl L-Carnitine is the hippocampus - the part of the brain responsible for learning and memory, the part of the brain that atrophies from Alzheimer's, and the part of the brain notoriously inadequate in children with DS.

If you google Acetyl L-Carnitine and Alzheimers (or Down Syndrome) you will find many articles and studies promoting the neuro benefit of this amino acid along with theories that are truly hopeful and natural.

I also wish to pass along a study I was made aware of today, Published December 12, 2011.

The title is : Effect of  Vitamin / Mineral Supplements on children and Adults with Autism
To my knowledge (please correct me if I am wrong, I gather as many as I can find) this is the first randomized, double-blind, placebo-controlled study which shows statistical significance at the P<.05 level. Areas measured were: Hyperactivity, Tantrumming, Overall function, Receptive Language, and Parent Global Impressions.

It is extremely exciting to have to the highly sought after double-blind study show statistical significance, but it is equally as frustrating to know that all of the research that has gone into these protocols was done for the Down Syndrome Community. When you look at things like methylation, sulfation, detoxification, it doesn't matter whether the ineffectiveness is a result of a chromosomal abnormality or not, the needs must be identified and met.

PDF of full article: http://www.biomedcentral.com/content/pdf/1471-2431-11-111.pdf

Iodarol is a naturally occurring iodine supplement. Traditionally, TSH has been the deciding factor in treating the thyroid in our children. I have written before that many schools of thought have different thresh holds for introducing treatment. Traditional medicine may wait until the TSH is near 10. Naturopathic practitioners will take a more conservative stance and treat over 5. Current Research indicates that ANY TSH level over 2.5 must be treated in our children. Lucas began Armour Thyroid (the natural dessicated hormone) several months ago and his TSH is a very normal 1.5. Upon further blood analysis there is still a fair amount of thyroid inflammation. This would have gone undetected had we not specifically looked for it, and the answer is simply iodine. I was certainly surprised to know that TSH, T4, Free T4 and T3 can all be within range, but symptoms still present because of inflammation. This is the one area I wish I could do over. I would certainly have treated Lucas's thyroid from birth - I wonder how much farther along with speech we would be!

Must Read Blog Post from Valerie Strohl

Please take a few minutes away from the real change you are creating for your children to read this post. Please pass it on to as many as you can. This is the reality - it is perfectly written and dead on accurate.

http://www.unitedmedianow.com/news/maternit21-and-other-lies-about-down-syndrome/

Mission Possible

For the first time people from around the world who have rejected conventional treatments, theories, and delay-based models of education and wellness for children with Down Syndrome are coming together. Humbled to have been asked to speak, I join visionaries in the fields of nutrition, biomedical research, naturopathy, and groundbreaking protocols.

I will join parents, neurodevelopmentalists, researchers, physicians, authors, and nutritionists.

For 4 years I have been working to find like-minded people. I have found some in North America, Australia, South America, Europe and South Africa. These groups all have contacts who - up until now - quietly went about their business of making their children well. Our voices are now unified for the first time. We all have our stories and theories, research and protocols, but it all began the same way -

with a gut feeling we were right and everyone else was wrong.

With a determination fueled by love to find a way for our child to accomplish the unheard of, we have found a way to stunning successes. Now it is time to shout our findings loud enough for all to hear and advance our most urgent agenda.

I can't even imagine the outcome of this conference and the next steps that will be born. I think about the parents in the Autism community who gathered their voices and won over critics with proof they could make their children well. I think about the researchers half a decade ago like Dr. Henry Turkell who were discounted by the mainstream as "snake oil salesman." I think about the beautiful lost souls who spent lifetimes in institutions because they were believed hopeless, and I think about the fact that 94% of people in our society do not want a child like mine. 

For all of those people, we are coming together. For all those reasons and many more we will initiate real change. 

Personally, this experience gives me the amazing opportunity to work on keeping my promise to Lucas-

To simply change the world.