Good Health....Therapeutic Play.....Changing Perspectives....Creating Change

Good Health..Therapeutic Play..Changing Perspectives..Creating Change..Good Nutrition..Early Literacy..Well Children..Achievement

Monday, August 29, 2011

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.

Thursday, August 25, 2011

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?

Tuesday, August 23, 2011

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



Monday, August 22, 2011

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!)

Saturday, August 20, 2011

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

Thursday, August 18, 2011

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

Sunday, August 14, 2011

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. 

Tuesday, August 9, 2011

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.

Friday, August 5, 2011

DNA and Genetics

I have always been fascinated by theories of epigenetics and DNA malleability. In part it is the reason I feel our natural approaches such as metabolic supplementation, IAHP programs like passive / sensory patterning, and determination to involve our children with "typical" experiences are more than just "interventions," they actually have real impact on DNA and genetic expression itself.

The following article, although a bit lengthy and dry, points out many things to consider when "treating" our kids. 90% of our DNA (and related material) goes unused as "junk." We rely on 10% at best and when Western Medicine studies DNA and gene expressions, they look at it through a physical lens. Things like gene removal and splicing are what our part of the world sees as future hope. Yet Eastern medicine's approach of things like meditation, positive affirmations, environmental manipulations, etc., are being proven to actually change the DNA without ever lifting a lazer.

We all know the challenges people with T21 face are all rooted in chromosomal and gene mutations, and previously assumed "hardwired" DNA. Yet we have all witnessed the most conclusive research study ever result in clear evidence, namely deinstitutionalization. Prior to the closing of institutions, things like self injurious behavior, self stimulation, profound levels of cognitive loss, and complete lack of ability to care for one's self were assumed to be "givens" because of the extra chromosome and it's influence on ability.

When I went to the Institutes, I was impressed by the fact that neurologically speaking, a hard night of drinking could result in a brain cell loss of about 10,000 cells, (college comes back to haunt!) whereas a stroke or major head injury could result in millions. On the surface, this is shocking, but when you consider the brain has billions and billions of cells and the amazing plastic ability to pick up the slack of lost cells, our approach makes sense from a neurological point of view.  How much more important for our children - above all others - whose injuries are a result of their very DNA, to take this approach to their very genetics.

Things like raised expectations, changing mindsets and speech from "special" and "delayed," and offering typical environments and opportunities to learn has the potential to affect many things, their genetics being first and foremost.

http://wakeup-world.com/2011/07/12/scientist-prove-dna-can-be-reprogrammed-by-words-frequencies/

Wednesday, August 3, 2011

Ready to Parent, Just Not This Child

A medical review from 2002 of elective abortions in the UK and the US found that around 92 percent of all foetuses diagnosed with Down’s syndrome were aborted. In Denmark, medical experts estimate the rate of abortions to be even higher. If the current trend continues, it is predicted that the last Down’s syndrome baby in Denmark could be born in 2030.

This past week I have been astounded by several articles coming across my screen about children with T21. One article reported New Zealand's expressed purpose of mandating pre-nantal screening with hopes that more moms-to-be will terminate. The above quote out of Denmark openly discusses eradicating people with T21 with the same hope we once had about wiping out polio. Perhaps more enraging than the actual articles are the comments that follow. Somehow, this issue is seen as a "Pro-life vs. Pro-choice" issue. 

Am I the only one who sees a difference between a person for whatever reason deciding they are not ready to be a parent and someone who purposely wanted to be a parent just not to the child they got?

Am I the only one sickened by masses of people outraged that ocean life died after the oil spills (because they were victims of cruelty they were helpless to protect themselves against), or the fanaticism about protecting endangered species but show no concern over wiping out a faction of the human race? 

At one time or another in human history we all have been devalued based on our color, gender, sexual orientation, ethnicity, etc. The difference is that we rose up and fought ... discrimination based on color is sickening, women can vote, gay people are finally tasting equality, and Hitler was a pig. 

People with Down Syndrome are not going to rise up and fight, they have already been dwindled in population to the point where their mere existence does not warrant serious money in research. They have even been devalued in the eyes of their very mothers, the ones who have been robbed of the opportunity to parent such a child, by doctors, specialists, and society who tell her the child will suffer, be a burden to her and her children, and be socially unacceptable. 

Truthfully it matters not to me who is offended by this, but turning the issue of wiping out a portion of the human race based on their undesirable extra chromosome into a "choice" issue is insulting and cowardly. The fact that a child is loved and wanted until the prenatal test results come back at which point mom wants a "do-over" is not only morally bankrupt but says far more about our society than it does our children.

For those who terminate because "they are not strong enough," your child would have made you stronger. For those of you who don't want your child to "suffer," any child could be born with a health issue, and outside of those I don't know any people - children or adults - with Down Syndrome who suffer. They actually enjoy life with an insight we can only catch a glimpse of when they are consoling us, or caring about someone else, or endlessly trying to achieve something, or selflessly trying to make others happy. 

Society thinks using words like "retard" boils down to political correctness as it judges people by their weight, clothing choices, and educations. Society finds it sexy to save the trees, and the wildlife, and the creatures of the ocean. 

What of these children who did nothing but exist because you desired them and will be wiped out because you are disgusted by them?

So too am I tired of the argument that these children are a leech to public money. Really? There are many who best hope governments do not use this issue as a litmus test for who should be allowed to be born. As a therapist I say unequivocally as a population, people with T21 are among the best contributors to society, they not only work but desire to work, to contribute, to be accepted. 

Where is the "movement?" Where is the concern? Where is the outrage of the eugenic movement across the world? Or is it easier to neatly cover this issue up with the blanket of "choice?"