Eleven Years Later

Eleven years ago I was forced to redefine the reality for what having a child with Down Syndrome would mean. I created this blog and a group on FB (DSAP) selfishly, because no one else shared my vision. I thought, just maybe, there were other people out there in the world who thought like me. Maybe I was delusional, but at least I would have company. 

I was contacted by mothers who were lost in a sea of voices trying to limit their children, and it seemed as if swimming against the tide would indeed drown us all. Skype conversations at 2 am, impromptu drives to NYC to meet a family traveling from Australia, more all-nighters than we spent in college reading and deciphering research articles, and endless conversations...not lamenting how things should be, but making plans on how to make them reality. Yesterday, on my birthday, I took stock. 

One mother interviewed me for a publication she is writing. She is also a PhD level functional nutritionist. Her child, who is non verbal and has a diagnosis of DS and autism, is learning pre-algebra with his mother. The school wanted to teach him the ABC's. Apparently, unless a child can prove he knows something, no respect in given to his intellect.

Another mother, who was a traditional physician, is now a visionary in progressive medicine for our children's unique needs. It is a mission of hers to educate us all to demand answers, and that when a doctor dismisses our concerns as "That's just DS," we understanding that is what she professionally calls diagnostic overshadowing - or plainly, negligence.

Another mother proudly shared her new e-book series teaching reading comprehension to our children, the way they truly need to learn...and many more who are homeschooling their children to levels that were previously unheard. 

Two moms in particular blow me away with their dedication to medical, neurological, and genetic research. The articles they share, and then in turn push for further research and application, most of us can barely understand. 

Most inspiring are the mothers who have children with complex needs. These moms who have been asking and pushing and working for years without answers. They are heroes, because despite every avenue that led to a dead end, they course corrected, charted a new path and forge on. Their children are truly blessed. And we, as a community, are behind them. 

These are just some examples of moms that were nearly broken, and simply decided enough was enough. We took our instincts, educations, and powerful love, and created a new reality. We could have been wrong. We weren't. Eleven years ago I wondered if changing the world for Lucas was too lofty a goal. Today, I am seeing it happen. Our children with complex stories and abilities waiting to be revealed are that much closer to realizing them and others are becoming well, learning, and blowing past even our sky high expectations.

The vision for the next 10 years is clear. We will take the burdens of the over-taxed educational system...a system which can only operate from a problem-based approach and fulfill only the basic element of inclusion; that being physical inclusion. We will create systems, and processes, and knowledge bases, and literature, and programs, and services, to teach our children from a strength-based approach, one that is focused on true learning, and demand all three critical pieces of inclusion...Physical, Emotional, and Intellectual. 

We will continue to dismiss the attitude of traditional medicine that we must accept poor health and development from our children. We will write, speak, and demonstrate the life altering approaches of functional nutrition, epigenetics, appropriate physical challenges, and ways to address the unique needs of each child with an extra 21st chromosome. 

Above all, we will demand a change in attitude. 

We will dismiss the idea that because our children may not be able to prove what they know in a standardized and structured way, it is assumed they don't understand.We refuse to let the educational system withhold true educational opportunities waiting for our children to prove basic skills. We refuse to to see Inclusion as a method, one in which the pattern of the young child starting off fully included, only to give way to the middle schooler is secluded in a more restrictive classroom plays out over and over again because they have fallen behind. Rather, we will view inclusion as the goal, one in which learning environments are tailored to children throughout based on their strengths instead of their perceived weaknesses with the ultimate goal being true and full inclusion. 

You have inspired me and challenged me beyond words. Most importantly, our children are responding in amazing ways and are beginning to teach us. They are becoming partners in this search for answers.

We have issues left to solve and questions left to answer, and we will because after 11 years we are just getting started.

The Wrong Message

 I have taken quite a hiatus from blogging. 

Lucas and I have been busy! 

I am thrilled that many of you are now members of DSAP, we are closing in on 2,000 members internationally and I am in awe of you. Your dedication, progressive thought, tireless questioning, and  defiant expectations are my inspiration!

That is why I could not let this pass without reaching out to all of you.

There is a young athlete (does it even matter that he has T21?) who, by all accounts I've read,  is exceptional at basketball. He plays with tenacity and dedication, hard work and sportsmanship. The team he plays for however, is not the Varsity team. His mom and 46,000 other people who have signed a Change.org petition, believe he should have the right to wear that jacket.

http://www.sportingnews.com/ncaa-basketball/story/2015-03-27/student-special-needs-varsity-letter-jacket-wichita-high-school-east-blue-aces-michael-kelley

This is not an issue about basketball, a school district, or even T21.

This issue is about equality.

If the student didn't have T21, would anyone say he should get to wear a Varsity jacket when he didn't play for the team? 

By giving our children privileges they did not earn we are simply saying.."Here you go, I know you could never do this on your own."  Seriously? 

My oldest son is a goaltender in a travel hockey organization. Every year he must re-earn the right to play for that team. As much as my heart would break for him, if another athlete came to tryouts and was better, Noah should be cut from the team. That's life. 

We can not stand and demand equal treatment in some areas and demand special treatment in others. 

We must choose.

There are so many other ways to recognize this athlete. What about working with the sports department and designing a club jacket for his team that all the members could wear with pride? What about writing articles to newspapers and shamelessly bragging on social media about his accomplishments? What about working with the athletic director to have trophies and a time slot at the end of year Sports banquet?

I don't understand why it is acceptable to give our children something they didn't earn. I fear it's because the vast majority of people think it's somehow charitable or empathetic to "give" a sense of accomplishment to our children. Or worse, that that is the only way they could ever "compete." 

John Marrs is one of my favorite people (along with his awesome mom). Anyone who follows her blog knows the story, and if you are unfamiliar, just Google him. He was inducted to the National Honor Society alongside his peers. I can only imagine what it took for that young man to achieve such an honor..the tireless hours of studying, the extra effort, the above and beyond-ness of every academic task. And he did it. (My heart pumps with pride just thinking about it!)

http://myplace.frontier.com/~ezlopin/johnmarrs/index.html

But, don't many students do those things? Should all of our children be inducted in the National Honor Society because they gave everything they had but still came up short? And if you are tempted to answer "yes" for students with T21, what about students without? Schools are filled with good students who go above and beyond, working as hard as they can...but guess what? There is a grade cut off. Make it you're in, fall short, you're not.

There needs to be a conversation, and NOT with society at large...it needs to be amongst ourselves. What do we want for our children? Do we want them to be seen as valued and integral members of society? Or do we wish to foster resentment between them and their peers? Do we want our children recognized for their strengths...and yes, every single one of our children have strengths that are exceptional.

Do we want them to be seen as a collective group that can't achieve things on their own?

I am dismayed at the fact 46,000 people think so.

True celebration of 3/21

World Down Syndrome Day

It's been a while since I last posted and of course couldn't let the near-approaching occasion of World Down Syndrome Day (3/21) pass without comment. (I promise I will not complain against the use of the outdated stereotypical label again this year!)

I just watched the news broadcast of some hometown athletes returning from Sochi with gold medals in the paraolympics. I also have been made aware by my 86 year old Dancing-With-The-Stars-loving mother that one of the women competing has bilateral lower extremity prosthetics - and is a snowboarder.

This leads me to wonder, what were these people told to expect when they were either born without legs, or lost the use of them? No doubt there was sadness at such an accident, but when the shock wore off, what were they told to expect? Were they told not to worry, an olympic medal could be in their future? Where they told they would someday be able to competitively ballroom dance?

I'd like to think so, and maybe they were. More likely, they were given cautiously optimistic outcomes. Most likely, it was their family who refused to believe these things were not possible and working under that assumption, set out to provide a lifetime full of opportunity.

So,  this year Lucas and I would like to celebrate his extra 21st chromosome by sharing with you his top 21 accomplishments since last "World Down Syndrome Day." (And it was hard to narrow it down to only 21!)

1. Lucas learned to skate, and is now talking about...I have no idea what I will do with 3 of them in hockey, but I'm sure I can figure it out!

2. Lucas graduated from preschool...

3. ...and started home-school.

4. Lucas started home school as a kindergartner but soon blew through curriculum - already knowing geography it was easy to start narrowing it down, studying ancient Egypt, Mesopotamia, Africa, and Asia.
5. Firmly established himself as the Wheel of Fortune Champion, much to his older brother''s chagrin

6. Finished the first grade spelling book by February.
7. Has read more books on the Presidents than I even knew existed...

8. Went another calendar year without a cold.
9  Runs a 12 minute mile!
10. Has begun Latin. Ego sum et nauta et agricola.
11. Survived sledding with Ryan!

12. Finished his first ever book report.
13. ...and diorama
14   ...and Map of NY

15. Loves Science class at the Buffalo Museum of Science
16. Is quite the bubble hockey player
17. Learned how to tell time.
18. We wont even discuss this one.

19. Can write and draw and add.
20. Is second only to Ryan on the monkey bars
21. Absolutely owns my heart!

Thank You for your emails and messages, you are all an inspiration! If you are not already a member, please join us on The Down Syndrome Action Plan fb group - over 500 strong and growing with like-minded, progressive, brilliant members!

Happy 3/21!
Geralyn and Lucas

I've had Enough with Polite Discrimination

Enough. I have had enough.

I am done with the waterboy with T21 who is strong enough to lug dirty towels, loves the game enough to clean up after others play it, and show up to do his job rain or shine, be "given" the opportunity to run an unopposed play.

And then what? We all sit around applauding the charitable act of the team - which it was - who gave this kid a chance to "fit in" for one play? Are we serious?

OK, so maybe football's a brutal sport that could potentially harm the young man because of physical differences, but then what about the Home coming king bull? I'd love to know if these "charitable" students who are smiling for the cameras in their ball gowns after "charitably" voting for the boy or girl with T21 have invited them to parties when there was no news reporters in sight? Do they sit with them at lunch? Do they have conversations with them about how hard it is to "fit in" in high school with or without an extra chromosome?

Maybe they do, I would never assume to judge.

All I am asking is that you the reader, the community, and the world at large afford people with T21 the same courtesy.

Enough with "awareness." Sorry for the offense for those genuinely believeing it is good, but awareness walks, awareness days at the ball field, awareness shirts, on and on.

Other people are aware that our loved one's exist. They will tell you they think our loved ones are sweet (because aren't they all?) and lovable. What they wont tell you is that they also believe our loved ones are LIMITED!

Limited?

Put your three year old with T21 in a kindergarten level reading class. I currently know over 300 people across the globe whose child with T21 was a fluent reader before age 3.

Some typical kids struggle with literacy.

Call the news for the child with T21 who runs miles every week and have him explain how it helps him breathe deeper, speak clearer, and learn easier.

Some typical kids struggle with being sedentary and have speech problems.

Talk to a mother who has elected to homeschool her child with T21 because she knows it isn't an inability to learn, but the distraction in the environment that poses a challenge to an immature nervous system. Ask her if she believes she can fix it.

Some typical kids have processing problems.

Don't look at my son as limited until you look at your own and realize all children have strengths and needs.

And also, I have absolutely had enough with the "R" word discussion.
Guess what? I don't care if you use the word, just don't assume it applies to my son.
Assuming something about a child based on how they look isn't insight, it's discrimination.

Finally, I have had enough with people thinking it's compassionate (or in any way their ability) to "allow" a person with T21 a "special" opportunity to experience the joy of living in this world, being accepted, competing, and "fitting in."

It isn't compassionate, it's ignorance. I promise you my son - and MANY others with T21- will not only compete, but they will succeed.

And they wont ask your permission.

3 Inches of Height in 2 Months, to What do I Owe the Results?

Happy Halloween!

 Anyone who is part of my Facebook group will recognize these photos, they were worth re-sharing here, I just love them so much!

 

 Lucas has been working very hard on ice skating! He starts formal lessons December 5th, but already I have been faced with "Mom, I play hockey too?"

Of course Lucas, because having only two children in travel hockey leaves Mommy and Daddy with way too much free time on their hands.











This is Lucas post skate.


If he looks like a hockey player and smells like a hockey player......








Although Lucas's overall health has been exceptional (yes another calendar year without illness of any kind - brings the tally to 4.5 years!) and his learning incredible, I have been stymied by the question of growth.

It never made sense to me that short stature was "just Down Syndrome." Maybe, but why? Everything I had read pointed to one of three things was at the heart of the issue - Thyroid, Disgestive system function, and nutrition.

For over two years his thyroid has been very stable (all measures including thyroid antibodies). Today at the biomed she even commented that we don't want it too low, his TSH was well under 1.0.

I can honestly say in Lucas's 6 years of life he has never had an issue of a gastrointestinal nature. Most likely a combination of his diet and supplements, his digestion process is excellent.

And as far as nutrition, I should be so lucky to have the willpower to eat as cleanly and properly as Lucas. (This includes monthly bloods, analysis, and supplements).

So then why was growth still lagging?

At our August visit to the biomed, she recommended we look at Human Growth hormone levels (Which surprisingly came back WNL's) as well as optimize methylation. (

For those wanting information about the processes of methylation I would direct you to Andi Durkin's blog, DS Daytoday - it is a virtual encyclopedia of explanations and simplifications! She also has full bibliographies for further research.

Prior to today's visit I was alerted to an incredible Doctor out of Oregon who posted this article in The Down Syndrome Treatment Center of Oregon group:

Global DNA Methylation: Nutritional Correlates and Child Growth.
http://deepblue.lib.umich.edu/handle/2027.42/97956
click "download" for full dissertation

It wasn't news to me that hypomethylation was a huge problem in children with T21, but I didn't ever realize the direct correlation to growth - so I thought this information worth sharing.

In August, in addition to all of the methylation boosting we were already doing, we changed 2 things:

1. We replaced sublingual methylcobolamin with B12 injections 2x/week (Not sure who loves this more, Lucas or I)
2. We switched to MSB methyl plus from MSBv7.

Today, 2 months and 5 days after our August visit?

3 Inches of Linear Growth!
 I did see the clothes getting shorter, but there is a certain quality to this growth spurt. Lucas's hands and feet looked not only bigger, but more mature (if that makes any sense).

His running is solid and in fact he now runs a 13 minute 15 sec. mile. If anyone would like to be his new running partner let me know! :)
 He loves to ice skate and is able to do so without the pusher for short distances..ankles strong, no pronation.

His body feels solid, his thighs and arms feel muscular, and he flies down the 18' of brachiation bars with only minimal support.

This also has come at a time of most impressive intellectual change from maturity, to sentence structure, to academics (who knew Home schooling would be my very

favorite thing in the whole world? Wish I had a do-over with my other boys...their school is wonderful, but this journey with Lucas makes me miss not having it with them!)

 

Lucas and Ryan working on their individual dioramas

Lucas's Finished Product

And summary!

Not sure if this means Lucas is a genius or a smart ass. Most likely a little of both.

I wish everyone a Happy Halloween as we creatively try to keep the sugar and dyes away from the kiddos!

I Got It

Summer is definitely winding down and as usual, we are winding up. 

Lucas turns 6 on Friday. 

6. 

I can't believe it.

After six years on this journey with Lucas, I have to admit...everyone was right about one thing...Having this child irrevocably changed our lives.

Just about everything else however, they were stunningly wrong.

Lucas's sixth birthday marks 4 years without an illness. I can't believe I instinctively know how to keep him healthy and how it also applies to my other children as well. I can't believe he's never had an ear infection, never had antibiotics, and has never been constipated. I wish I could go back in time and tell myself that on the day of his birth.

Lucas's sixth birthday marks the start of his formal school years. I can't believe I not only feel confident enough to homeschool him, but that any other option feels horribly wrong. I can't believe that his IHIP (Individualized Home Instruction Plan) spans grades 1-3 and I am putting lessons plans together for things I wasn't sure he'd ever be able to learn on the day of his birth.

I can't believe he can read. Not Cat in the Hat, or Go Dog Go, but magazines, newspapers, advertisements, and text books. Every time he he reads to me I feel empowered, and a bit humbled. His reading also brings challenges - as Noah said the day the above photo was taken - "Lucas's reading is really becoming a problem!" We were trying to walk around the fair and ended up chasing Lucas all over creation because he saw a sign for a train exhibit, or ice-cream (I know dairy is a no-no, but how on earth could I refuse his request for Panda Paws with peanut butter swirl???)

And on that same note, I can't believe we were at the fair all day long and at 9:45pm we were still chasing him. (We really have to work on slow down and stay with me!) On our way out he pointed and said said "Look Mom, Boxall's I Got It!" Yep, he got it.

 

I really can't believe that this journey felt so lonely on day one and six years later has brought women into my life from around the globe that feel like family. Our facebook group is growing steadily and I find myself going there first thing in the morning to check in with everyone, and last thing at night to see how everyone's day went...what kiddo achieved what, and what new ideas these brilliant women had.

I can't believe I'm not jealous of other children's accomplishments, rather - I look at them as a to do list.

I can't believe I don't ask "what if" any more, I only ask "how." I guess that's because we've never not found the "How" yet.

I can't believe Lucas is the son that looks most like his daddy (and a lucky daddy he is!)...

or that he would have such an amazing relationship with Noah who is six years older...

I can believe however, that Ryan would be the one to teach him all sorts of "fun" things...

 

 

like "mom doesn't really mean it when she says don't play with her phone."

 

I can't believe six years has changed pretty much everything I learned and believed to be true about therapy, interventions, education and medicine.

And lastly, I can't believe I am lucky enough to be this little boy's mother and that I would be so much less if he was never given to me. I personally still have a looong way to go, but just the other day I read something that further convinced me to stay the course..

The first graduate from the University of Kentucky with T21 was interviewed. 

She didn't credit a pill, or a therapy, or a single intervention as the key to her success (although she did say she grew up taking vitamins to provide her with the things her body needed).

She stated (as has Karen Gaffney and many other adults with T21 that the world looks at as "outliers") that the keys were:

 

- Learning to read very early

-Having parents who taught her and kept her out of activities that didn't encourage her to achieve and excell

This is good news indeed, and I can believe it.

Happy Birthday Lucas!

I can't wait to see what unbelievable things this year will bring!

 

Six Months Post Expansion

Oh, they think they're sooooo funny. Did they really think there was any way I was letting them buy all the chips they put in the cart???

One of the two main reasons we had decided to aggressively pursue palate expansion was to optimize function of the pituitary gland. Anatomically, it is cradled in a skull bone that is directly affected by a narrow mouth. According to Dr. Weston Price, this compression results in the decreased ability of the gland to function properly resulting in many things we commonly see with our children.

Pretty much everything on our list has some roots here; growth, intellect, hormone production, and another that I was very interested in - Nocturnal Enuresis; bedwetting.

Continence during the day is one thing - anyone with children knows the potty training gig. We allow the child to move through a process that ultimately teaches them to identify the need to use the toilet and then void. Night-time incontinence is different, and until I started reading Price's work I simply thought it was because the child was asleep and didn't realize they needed to void.

Not so.

The hormone arginine vasopressin is naturally produced in a circadian rhythm by the hypothalamus and stored in the pituitary gland. Until the gland has produced sufficient levels of this hormone, the child's brain isn't sending the correct signals. (Just a side note, I can't help but notice all of the discussion about neurotypical kids and night time continence. I firmly believe since we've been on this path with Lucas that our western diet is creating smaller and more maladaptive bone structures. Dr. Price outlines it perfectly in his research. Might this be the key to night time continence for neuro typical kids as well? And now, that we are generally seeing kids begin with orthodontics around age 7, is there a correlation between expansion and night time continence in them as well?)

When we started the expansion process, Lucas was still in pull ups for sleeping.  We discontinued them about 3 months ago because Lucas was continent 4-5 nights during the week. As of late he was fully continent at night but would wake very early wiggling around because he had to go to the bathroom.

Last night I was startled to wake at 3 a.m. with Lucas standing next to my bed. I asked him what was wrong and he said "I have to go to the bathroom." So, in my sleep induced coma - mother of the year emerged - and I said, "OK, go." And he did. Fully emptied his bladder, (washed his hands!) and went back to bed.

Under no circumstances can I call this a coincidence. It has methodically been improving since we completed the expansion...and although our daily program has increased significantly with the addition of a respiratory excellence component, his speech is beginning to explode. All parts of speech evident in sentences that are 4-6 words in length, prepositions, articles, descriptors...all there.

There are so many approaches to our children, and when they are looked at in isolation, they would drive us insane trying to account for everything. For example- trouble with balance? PT. Trouble with speech, ST. Trouble with fm control, OT. Trouble with ADL's, OT, Behavior mod. Trouble with behavior, Psychologist. Trouble reading? Special Ed. And then, as if that isn't enough - we get even more specific - The PT believes in NDT, the OT wants the child to focus on a sensory integrative program, the Speech therapist wants oral motor expercises, Special Ed thinks the key is to slow things down (don't get me started on that one) and to focus on one thing at a time, and on and on.

As an OT and now a mother, I wholeheartedly believe this approach is missing the boat. The key is not to breakdown skills to the very smallest component and put together plans for each, The goal is to look at every area of need and figure out where they all intersect - because they do. Optimally, we can use the "Lists of what will be wrong" at some point in the future to draw those conclusions BEFORE the need becomes evident. This allows us to put real programs in place that become part of the child's day - everyday - to ensure we do not see those problems emerge.

That's what we're doing so very successfully - without therapists, without special ed - without school - and without doctors.