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Tuesday, December 19, 2017

Tis the Season!

Happy Holidays = Happy Children! We found a Christmas tree!!
Of course, we decorated one as well.
Yes it's that time of the year again. A time of giving and sharing. A time of home and family. You can feel it in the air -- and you'll catch it if you aren't careful. It's a time when not one, not two but three children give and share the gift of a virus. And they stay home. As one big happy family.

Yes, winter is here.

Albeit with the temperature at 60+ degrees Fahrenheit, it begs the question, what winter? Aside from the snow machine at the YMCA Christmas Festival, we barely need jackets.

So why are we all sick? The timing is uncanny and actually even a medical doctor would vacillate between calling this a biological bug vs. an emotional ailment. Because after six weeks of bliss, Mimi and GongGong have left us to return to New York. Lucas already had a fever, perhaps in anticipation of their departure. But both Raia and I came down with our own just as their plane touched down in New York City. Literally, within the same hour.

Raia and I were quite cognizant of the
devastating circumstances about to befall us...
...While Lucas was delirious with fever. 
Raia made it tough on the grandparents

We have been diagnosed with a grave auto-immune malady - GDS: Grandparent Deprivation Syndrome.

According to WebMD for Babies:
Symptoms include: Fever. Moaning and whining. Sugar addiction. Bad Glorious habits including falling asleep only if an adult strokes your back and snacking all day long... on sugar-related products and white bread!  
Prognosis: Weeks of forlorn and cranky children. Sugar withdrawal. Some All may develop a fever. If fever persists for several months or exceeds 120 degrees Fahrenheit, see a medical professional or run to the nearest hospital. Or buy five plane tickets.
Cure: None ... until the next grandparent visit.
After six weeks of daily grandparent love and spoiling and a splendid "Fake Christmas" day with them last week, replete with gifts, tea biscuits, an Italian Pandora and hot spiced cider, we are back to our regimen of reality.

And so we crashed. Our spirits sank while our temperatures soared. We cried and moaned. We sulked. We extended our current school break from Hanukkah, endeavoring to carry it on to Christmas and perhaps the New Year as well.

In other words, Christmas is canceled this year. AGAIN!! Recall this incident??

And we miss you desperately, Mimi and GongGong! But, no guilt. No, not from us.

Wednesday, November 1, 2017

DS Awareness Continues: Over Expressed Genes Matter!

The only thing over expressed here is cuteness!
I missed the last two days of Down Syndrome Awareness Month because, well, I have DS. And when you possess the extra chromosome you are also subjected to extra meetings and therapies and other sundry tasks that may occupy your time.

For instance, on the last day of October, I had meetings all morning at my school. I knew I was being observed during one of these meetings while my tutor tried to work with me and so I performed well. And by "well" I mean the observers were not impressed, but the Oscar committee is considering not if but how many Oscars to award me. It was an educational experience to say the least. For them. 

This brings me to one topic I have yet to touch on during DS Awareness Month and is perhaps the most elementary: What on earth is DS anyway? 

I would've assumed that this is known, but admittedly even my parents really didn't know the specifics of this until after I was born. And then, inspired by a YouTube video in which a man overheard a kid ask his father, "What's Down syndrome?" and the father, not to be mean, but out of sheer ignorance, responded: "It's an illness. It's an illness of not knowing anything," I thought I should set the record straight. Especially since I know everything. As most children do.

Simply, Trisomy 21 (T21) is the scientific name for DS explaining that there is an extra chromosome on the 21st pair. So instead of a pair it is a trio. And instead of 46 chromosomes like most people, I have 47. One happy little extra chromosome is all it is.

But this one little tiny extra chromosome causes a litany of side effects in my body from slower mental and physical development to thyroid complications, a lower immune system and certain facial characteristics that set us apart, among many.other.things. 

Those issues are not what defines DS, however. It is simply an extra chromosome, a gene that is over expressed in the person. Everything else is symptomatic.

So, if the entire basis of DS is due to over expression of this extra chromosome in one's DNA, then we can view DS as a biochemical issue. Biochemically speaking, people with DS have a harder time detoxing heavy metals from their system. Their methylation cycles are challenged. They generally have lower levels of selenium, zinc, iron, glutathione and more. All of this - and there is much more - causes a domino effect of physical issues (in addition to what was mentioned above such as thyroid and immune issues). Thus you'll find many blog posts of mine written from a hospital, while attached to oxygen. Or from an operating table. Or after traumatic trips to the ophthalmologist, ENT, cardiologist, dentist, orthodontist, endocrinologist or any other medical expert that I so desire to meet.

If you deal with DS on a biochemical level, Targeted Nutritional Intervention (TNI) may become a way of life for you - or for your parents who are helping to ease or even alleviate the challenges brought on by the extra chromosome.

As one parent who is also a scientist put it:
... The next best thing is a multifaceted therapy that inhibits these genes and works to target as many disruptions of biochemical pathways and neurotransmitters as is presently, humanly possible
Since this is exactly how TNI works, anyone with an understanding of DS biochemistry and who has studied epigenics isn’t likely to disagree. ...So what can you do? You can do your own research. You can ask “what good will ignoring gene over expression do for my child?” 
Don’t expect your MD or Naturopath to be biochemists. Most have very little, if any background in biochemistry and none in DS biochemistry, which is decidedly different from non DS. But do expect them to hear you out, to look at the research, and to keep an open mind. 
If someone tells you that there is no need to inhibit over expressed genes, find another care provider. Far too much research exists saying just the opposite to justify that mindset. As the mother and grandmother of girls with DS, I cannot understand this “do nothing” attitude. As a scientist, it makes even less sense. 
She then goes on to talk about how Alzheimer's inevitably develops in people with DS at an early age and how TNI can be used to stave off the effects.
Why should we simply sit back and let this happen? Why would we not do all we can to insure this never happens? Should we just accept that it’s inevitable when research clearly says it is not? Do we, as parents, really have the right to accept that on behalf of our children? 
One day, your children with actually be able to thank you for that. Don’t be discouraged by people who oppose you. This is your child, your family, your choice. Not theirs.
When you look at DS or T21 from this perspective, you begin to see our outward challenges for what they really are: invisible internal complexities that are assaulting our body all the time.

So we aren't dumb, slow or retarded, but we are impaired by an extra chromosome that affects every area of our bodies' functions down to the cellular level. And when you see us and all of the ability that we have, you should understand that these abilities were hard gains. But, we did it!

And that is why we celebrate every tiny accomplishment.

Sunday, October 29, 2017

Down Syndrome Awareness Month: DIGNITY Matters!

Me showing off my esteemed artwork at school

Here is the official statement from Miriam Webster:

the quality or state of being worthy, honored, or esteemed
bearing, conduct, or speech indicative of self-respect or appreciation of the formality or gravity of an occasion or situation. (Thus my auspicious blog)
nobility or elevation of character; worthiness:
dignity of sentiments.

And here is the official statement from the United States government, thus validating my dignity on a governmental level and celebrating my existence, as we should everyone's!

During Down Syndrome Awareness Month, we celebrate the significant contributions that people with Down syndrome make to their families, to their communities, and to our Nation. We also salute the family members, caregivers, medical professionals, and advocates who have dedicated themselves to ensuring that these extraordinary people enjoy lives filled with love and increasing opportunity. As a result of these remarkable efforts, people with Down syndrome are living longer, more enriching lives than ever before. 
This month, we renew our Nation’s strong commitment to promoting the health, well-being, and inherent dignity of all children and adults with Down syndrome. Through sustained advancements in education, research, and advocacy, we will further empower those with Down syndrome to pursue the American Dream of independence, pride in work, and full participation in civil society. We will also continue to increase public awareness regarding the true nature of this condition, and to dispel the stubborn myths about the degree to which it is disabling. 
Sadly, there remain too many people – both in the United States and throughout the world – that still see Down syndrome as an excuse to ignore or discard human life. This sentiment is and will always be tragically misguidedWe must always be vigilant in defending and promoting the unique and special gifts of all citizens in need.  We should not tolerate any discrimination against them, as all people have inherent dignity. 
The approximately 250,000 Americans with Down syndrome truly embody the great spirit of our Nation. They inspire joy, kindness, and wonder in our families, our workplaces, and our communities. We will always endeavor to make sure that their precious gifts are never maligned or taken for granted.

Saturday, October 28, 2017

Down Syndrome Awareness Month: SEATING Matters!

...Seating matters? you may ask. Yes, because social life, friendships, inclusion and real relationships matter.

And it's not really seating, but the point being where one is situated in a given situation.

As we continue to bring awareness in Down Syndrome Awareness Month (see yesterday's post, Language Matters), another facet of which to be aware is the emotional struggle that many parents go through as they usher their children into various social environments. Every parent wants their child to be included and loved. But sometimes it is harder for the child - and his or her peers - to relate, or to keep up.

In today's article one mother recounts her experience on the holiest day of the year for her, as she split her time praying while worrying about her daughter not fitting in with her peers playing outside.

I have no solution to present, just to become "aware" of this issue as well. Becoming aware is the first step to making a difference in a situation.

God bless Jodi Samuels, who wrote the following article, as she helps the gorgeous and talented Caila navigate life.

Why I Cried This Yom Kippur

I requested a very specific seat in shul - an aisle seat but in line with the window. I need to be able to keep an eye on Caila, who is 9 years old with Down syndrome, while she plays outside. Temira, my other daughter who is 13 and I take turns every 15 minutes to go check on Caila and so we need easy access in and out.
Every time I looked out the window my heart ached for Caila. She was standing or sitting alone looking so sad. Caila is unusually high functioning for her diagnosis and not blissfully unaware of her surroundings. She knows when she is included and when she is being left out, she tries so hard but it is sometimes hard for her to manage the dynamics in a big group, especially in an unstructured environment. She is fine one on one or in the structured tefillat yeladim (children’s group) at shul, but when all the kids are running around in a disorganized play routine it is hard for her to process and keep up. And more than anything Caila craves playing with the other kids.
Our telltale sign when she is anxious or stressed is that she picks at the skin on her lip. Yesterday, her lip was bleeding. By the time services were done I was a wreck and I was waiting for Gavin outside. As soon as I saw him I just burst into tears in front of everyone in uncontrollable sobs. Watching Caila struggle so much for the social inclusion that she craves was just too much for me.
It is also difficult for the little girls to understand and accommodate for Caila. They too are trying to fit in and survive the complicated group dynamics of young girls. When they are alone with Caila it's easier to accommodate for her. When one, particularly sensitive mom went out of her way to make sure Caila was included it really helped. She picked one girl to pair with Caila on an activity and Caila was beaming. It was the best part of the day.
I also have guilt and often wonder if it's fair to push her in inclusive environments – perhaps more special needs environments would be easier for her. But on the other hand I know that she had difficulty in special needs environments because she is so high functioning. In an afternoon program for kids with special needs she mothers the kids her age instead of really playing with them. She is ahead of her special needs peers academically so they put her with the teenage girls which is also socially not a solution. So how can we help Caila?
At school, we are very fortunate to have a wonderful assistant (sa’ayat) that helps mediate the social integration with the other children during recess and there are some amazing mothers of children in Caila’s class who have Caila over or bring their kids for playdates and sleepovers but sometimes with the busy schedules that everyone has, remembering Caila falls through the cracks. On Purim this year, Caila delivered her mishloach manot to her school friends’ homes and then waited at our apartment for her friends to bring her mishloach manot…………and only one came. She was so upset.
I know that Gavin and I were given Caila for a reason and I know that Hashem only gave her to us because we can cope with this challenge. Yesterday, I prayed with all my heart for the wisdom to know how to help Caila and the strength to keep making sure Caila achieves everything she can. It’s just some days are a little harder than others……….

Friday, October 27, 2017

Be-Awareness Month for people with Down Syndrome! Language MATTERS

Talia is well aware of my existence

And knowing that, she may also caution you to: Beware!

Beware! This is a month where I can take the concept "it's all about me" to a legal level. October has been declared Down Syndrome Awareness month. And as there are only five days left in this month, barely, I had better get cracking and write something.

Or, I should share some brilliance that has already been published. There is no one subject of which to be aware when it comes to Down syndrome but rather the many facets of individual people who possess an extra chromosome. You can be aware of my existence, and if you're reading this, you are! You can be aware of my biochemistry, and if you are you're a scientist or a doctor, or a mom who has become slightly obsessed with balancing my biochemicals. But you can also be privy to some vignettes of of lives that perhaps may be a bit different than yours.

I will begin with a hot-off-the-presses article by Beth Steinberg, one of the other Israeli Wonder Women that live here aside from Gal Gadot. Beth's article brings our awareness to language.

"Language matters," she reiterates. 

And amazingly, with politically correctness having gone wild, a word still lurks that should've been stamped out long ago. How did this one get by? Or even as Beth notes,how is it "back: repurposed, reworked, and better than ever" ??

It's one spicy and challenging article. Curious? Read on...

What “Tard” Are You Anyway? Name Calling In 2017

Whether about gender and sexuality, developmental difference or politics, “retard,” is back: repurposed, reworked, and better than ever.

Originally published here:

Are you a Libtard or a Libertardian? A Conservatard or a Neotard? A Gaytard, Fagtard or Lestard? Or maybe just a Tard, described in the Urban Dictionary as “one so retarded, they do not deserve the ‘re’.”

Squirming as you read those words? Sure you are. You’re a nice person. You don’t say the word ‘retard,’ certainly not to someone who’s actually retarded, meaning who has developmental delay, but you might use the word when you or a friend does something stupid or idiotic – you know, something that’s just ‘retarded.’ (A 2014 poll by the National Down Syndrome Society noted that 90% of responders said exactly the above sentiments as to their use and misuse of the word.)

You might certainly use the word retard about anyone who’s on the opposite side of your political and religious beliefs, right? They are such lunatics after all. Horrible people, undeserving of your regard.

In 2017, trolling someone else’s feed, name calling, and plain old online-nastiness is the nature of social discourse today, aided and abetted by the invisibility-visibility cloak of social media.

To be mean and show our smarts? It’s an inalienable-online-right, up there with bearing arms and buying bump stocks for our AK-47’s, or our Twitter feeds.

Just this past week, I was taken aback by a recent thread on Facebook ,in response to an article about President Trump, where a commenter noted, “Please, he is an idiot…retarded people have an excuse for their behavior, Trumpturd…does not!”

I sat back and thought for a moment. If a person has a known developmental delay, he or she has the right to bad behavior.

Really, who said so?

And, is that why people without disabilities continue to believe that people with disabilities are dangerous?

A 2011 poll by Akim, an Israeli service provider and advocacy organization for people with developmental delay, reported that 25% of respondents believed that people with developmental delay are violent and threatening. A follow-up poll in 2016 which measured the responses of both people with and without disabilities, showed the kind of emotional disconnect seen regarding the use of the word retard. While people without disabilities responded more positively than in previous years as to befriending (70%), and/or living near someone (90%) who has developmental delay, people with disabilities reported that they are often spoken to rudely and inappropriately, and almost 50% of those polled said they’ve been attacked and abused by others because of their cognitive differences.

Who’s exhibiting bad behavior then?

Just this morning, as I gently nudged our 20-year son with disabilities – Down syndrome and autism, both forms of developmental difference – through his morning routines, he paused to offer me a morning hug and a snatch of a song that was running through his head. A song, that much to his annoyance, we haven’t recognized after an exhaustive search through his playlist and youtube history. But I digress. After a moment’s irritation – I hadn’t had any coffee yet – at his slowing us down during the morning rush, I laughed and thought to myself, “Akiva is such a nice guy, why don’t people appreciate that more about him?”

Let me put that better. Akiva who prefers touch to language, often forgets to use language when interacting with others. If I’m there, I’ll remind him and help him facilitate conversation with others. But in those awkward first moments, especially if they don’t know him, they’ll look at me and say, “it’s okay, it’s okay,” and I say, “it’s not okay. Akiva wants to make conversation, and if you’ll work with him, he can.” And if Akiva has a moment of frustration and verbal fatigue where he might pinch or scratch, he is always asked to reckon with his behavior, as it is not nice, nor is it acceptable. His developmental differences do not allow him to be a jerk.

But back to that Facebook thread and the skewed notion of “retarded people have an excuse for their behavior,” I commented, “I’m no fan of 45 but would ask you not to compare those with developmental delay as having an excuse for bad or ‘idiotic’ behavior…Being retarded cognitively, means your development and your understanding and ability to gain certain skills, may be delayed, but that may not delay your understanding and caring of others. Retarded does not mean you’re an asshole.”

Language matters. Language matters. Language really matters.

Beth Steinberg is the Executive Director and co-founder of Shutaf, Inclusion Programs for Children with Special Needs in Jerusalem. A believer in Jewish camping, Beth is a graduate of Massad and Ramah camps, where she learned the importance of informal education programs as a platform for teaching Jewish and social values. As a parent of a child with special needs, she struggled to find workable, appropriate activities for her child. Beth believes that a well-run inclusion program can help educate and change values, creating meaningful and lasting social change.

Friday, September 15, 2017

Inclusion is for the ‘brave’ — and the stupid

My mother did it again. She got on a soapbox and ranted a bit about my "situation." Here's what she had to say, originally published at this link at the Times of Israel:

Inclusion is for the ‘brave’ — and the stupid 

As we navigate the school system here with our child with special needs, many we encounter in the education world constantly remark, “You are so brave!” 
I never associated “brave” with our decision to mainstream our child in a regular school. The law supports our decision. Research supports our decision. You mainstream or you don’t, and it is simply a decision parents make for their children, not an issue of courage. 
Brave is bungee jumping off a bridge. Brave is facing an enemy in battle. Brave is watching a loved one undergo surgery. I didn’t see the connection to our situation, but for a few moments I’d feel flattered. 
Not to be left out, I joined my siblings at their school this year.
Fully, and, apparently bravely, included.
But this supposed compliment nagged at me until I finally realized why. What they were really saying was: You must have a lot of courage to embark upon something that is destined to fail. 
You are so brave! While you must realize that your child will never be good enough and probably can’t last in mainstream education, you are taking a few years off from reality to try it out! 
You are so brave! There you go including your child with no support system and an extra financial burden while we in the system sit back and wait for you to come back to your senses! 
You are so brave! Good luck chasing down all your rights and services since no one in authority is going to lift a finger to help you get them. In fact, we may work against you! 
The attitude here toward mainstreaming really sucks. It is antiquated and pathetic. Low expectations dominate both for our “special” children’s success and our “regular” children’s acceptance of them. And these low expectations are killing our children’s advancement. 
Mainstreaming is discouraged from the highest levels. This is not reflective of a progressive, first world society. 
All of the burden falls on the shoulders of the parents, the schools and teachers willing to include a student with special needs in their class, and a few organizations, such as Beyachad, that promote inclusion. 
And those who are the system are the very ones who call us brave — because they know their own shortcomings. They know we’ve entrusted our child to their unable and unwilling hands. As my husband said, it’s not “brave,” it’s stupid. It sometimes feels like a stupid — and exhausting — decision to mainstream. 
Israel, you need to get your act together. 
Currently there are dozens of children with special needs still awaiting placement in a school for Sept. 1. Beyachad is aggressively case managing for nine “inclusion kids.” After placement these kids will need an aide — most likely someone the child has never met before, will be paid a minimum wage salary and work fewer hours than the child has school. 
I watched as representatives from a kindergarten and the Ministry of Education bullied a friend into enrolling her son in special education rather than put up this doomed fight for inclusion. They pointed out every possible problem the child would have and emphasized that there would be no support from the Ministry of Education for this child. They clearly had no hope — or desire — for success. 
How can that be? Why not solve these problems together rather than be intimidated by them? Is it laziness, incompetence, ignorance or all of the above? 
Where is the bravery on your side? 
One friend whose daughter was mainstreamed after they moved here from America said that the teacher assured her at the beginning of the year, “I am not afraid of the challenge.” 
That is bravery. That is courage. And that is honorable. 
We as parents should not have to decide to leave mainstream education because the system cannot provide the basic right of education for our child, in addition to simple services such as substitute aides, subsidized after-school programs and basic therapies. 
We should decide to stop mainstreaming when it suits our child, not when circumstances become untenable for our wellbeing. If the system really cares about our children and their education, then support the parents, support the teachers and support the child — wherever he may go!

Friday, March 24, 2017

Attaining 'Special' V.I.P. Status

A Very Important Person
(not breaking news, I realize)
photo: DG Photography (and she rocks by the way)
Disability is a touchy issue. That's why adults constantly debate the careful wording of labels they are going to use to place on us, so as not to offend while somehow conveying the idea of "different" in the kindest way possibly.

But you know what the wise ones say: "Out of the mouths of babes." Like my brother Lucas, who aside from being a pain in my butt, is a sage. Lucas, who knows no labels at this age, shattered specific labels when faced with advocacy for his older brother.

Here is how it went down:

I went with mommy to pick up Lucas and Raia from their school. Not everyone there knows me since I attend another school and so one of Lucas's classmates stalked me for about 15 minutes as we played in the school yard. I wasn't sure if he wanted something or if he was just admiring my debonair good looks. I thought for a moment that perhaps, like me, he didn't speak. But I didn't ask. His curiosity finally prompted him to say something to another classmate, while pointing in my direction, still staring.

Tiger Mom, watching all of this, had been ready to pounce. When the pointing began, a fortunate and rare wave of restraint overtook her and she decided education would be a better path than risking arrest/pummeling a 5-year-old boy. And who better to educate a 5 year old than a 5 year old?

Mommy's intervention was thus: She told the boy that I was Lucas's brother and that if he had any questions about me, he could ask Lucas. Then, rather than wait for him to ask, she sent Lucas, as an ambassador of goodwill, right on over to the boy to answer his questions.

Here's what ensued:

"Why doesn't your brother talk?"

"He doesn't talk because he doesn't talk yet."

"Why not?"

"Because Daniel is an important child. A very important child."

And thus, I shed the word "special" and was promoted to VIP status.  Which, by the way, was always the case.

Lucas, ever prescient, used the week of World Down Syndrome Day, March 21, to educate his general public about the importance of certain children. Or perhaps the timing didn't even cross his mind. Nevertheless, his simple truth and his intervention elevated my disability into a very powerful status.

Important today, world leader tomorrow!

An important child.

If adults perceived the world through the eyes of children, the world would be a much better place.

Three very important children wrestling in their parents' bed

"For the kingdom of heaven belongs to such as these.” Matthew 19:14

Monday, March 13, 2017

Pajama Party Day = Issued as a Great Salvation to Parents

School checklist:
Coat, check. Shoes, check. Pajamas?? Double check!

Sleeping at school? Not just legal
today, but encouraged!

On the first day of the third month in the year of our Lord 2017, an edict went out to all the land that school children would, for one day in the second week of the third month, be required to wear pajamas to school.

The edict went forth as a ceasefire between parents and children who, for one day, would cast aside their battle gear in the never ending war against parents clothing their children, who, in turn, were justified in their eternal battle against clothes and dressing oneself.

Across the land, cheers went forth from the children. That morning, children offered - for the first time ever - to dress themselves rather than wait for parental assistance. They sped through breakfast with nary a cry of resistance then sprinted to their rooms where they chose and donned their nightwear, even after shedding the previous night's nightwear for fresher models.

Harried parents who were known for getting their children to school late, arrived significantly earlier, much happier and extremely less stressed.

Children, giddy with the justification of their anti-clothing reasoning, floated in rebellion-free orbs from homes to cars to classrooms, even carrying - for once without argument - their very own backpacks.

In some districts the Day was known, aptly, as Pajama Day, while in others the observation of this event was known as Opposite Day in which day became night and night, day.

In all districts, there was peace and happiness for 24 hours.

Changing things up changes the world!

It was a slumber party of epic proportions! Even the adults joined in,
like my PA (or PO) Talya!

Even the fake smiles were real that day! Right, Raia?

Super heroes? Nah, just super happy!