Thanksgiving Thursday : Being Grateful for the Hardships

They say if the only prayer you ever speak is “thank you,” that will be enough! But, how often do any of us not just say, but genuinely feel deep gratitude? A friend of mine shared a video on FB recently of an old man, blind and begging on the streets of a busy city. His sign read, “I am blind. Please help.” Passersby barely noticed him, or, perhaps, specifically avoided looking at him. Finally, a sympathetic woman stopped and rewrote his sign to read, “It’s a beautiful day and I can’t see it.” Suddenly, by playing up his misfortune compared to their own good fortune, nearly everyone who passed began dropping coins in the old man’s cup. While its not necessary to dwell on others’ hardships to feel thankful, I agree that there is nothing like a challenge to make you appreciate the most basic things in life! One of my rescue dogs, Miss Molly Boxer, is losing her eyesight due to a condition called  “boxer eye.” It is a downhill battle that begins with the loss of eyesight and could eventually kill her via infection. As she willingly let’s me clean, moisturize and medicate her eyes multiple times daily, she struggles to see my face beyond the scar tissue forming over her corneas. And when she finds the right angle where she can see, even if only a little bit, she holds that position and looks deep into my eyes as if to memorize my face and commit it to memory for the time when she can no longer see. She holds my gaze directly as if to say thank you for taking her in and for doing all I can to maintain her eyesight for as long as possible. Her gratitude is palpable. I feel it deeply.  Imagine if we humans could ever be as simply and openly grateful! So, on this day that should remind us ALL to take pause and BE, FEEL and ACT palpably grateful for ALL that we have, here is my heartfelt list of things I’m thankful for. IMGP09611. I am SOOO thankful that my children are getting a decent education. It doesn’t matter that I am not in agreement with the implementation of the national Common Core standards, and, yes, we desperately need to use a different methodology to teach my kids to read, but overall, it has occurred to me that I am beyond fortunate that my children attend the local public school with their peers. It wasn’t so long ago that I would have been encouraged to commit my Beautiful Little Men to a mental institution at birth. A place where, not only would they NOT receive any education at all but, history shows us, they’d barely receive enough basic care to survive, never mind do so with any kind of dignity. Thank GOD we live in a free, democratic society where everyone is entitled to a fair and public education. What a fantastic privilege! Already, my children and  I are more educated than most of the world’s population. Lucky, lucky LUCKY us. And, in the words of my dearly departed Grandma, “Thanks be to God!” 2. I’m beyond grateful that I can SEE. I can hear. I can walk. I can breathe. I can smell and move and laugh and cry. I can feel pain and I can and do feel joy, daily. I have food and the ability to eat (lots of juicy turkey today)! Though I may be on the cusp of needing reading glasses and/or a hip replacement (JK), I am here! Alive for another day! There are many people who will not have the privilege of seeing another sunrise — some willingly and some unwillingly, some gone too soon and some at just the right time, it seems — all permanently leaving this earth. But I am ever so grateful that I and my loved ones have another shot at this thing we call LIFE! At the first signs of aging, my dear old Aunt said, “boy, this getting old thing s*cks!” To which I replied, “but it is soooooo much better than the alternative!” I am here. And, I hope to make the best of this glorious second, this amazing moment, this day, month, year and life that I have been gifted! 102013 Brian, Mike and Olivia Mass Playground3. I am grateful for Down syndrome and ADHD. With these disabilities, come extraordinary abilities, opportunities and joy! Yes, comparatively, there are worse afflictions but what does that have to do with me and my life? You see, I am absolutely certain that there’s a mama somewhere typing this exact thing about her child with what I would consider an extraordinarily more physically or mentally challenging disability right now. There is ALWAYS someone worse off AND someone better off. That has nothing to do with me! I receive so much from my children with Down syndrome and with Attention Deficit. Each is not without an upside to counter the downside. If you want to see the upside of Down syndrome, come meet my beautiful Little Men. They are the BRIGHT side of life for sure… they’re happier than most even at their crankiest! I am sure we laugh more than the average family! And, my extraordinary Old Soul is a brilliant conversationalist and beyond connected to nature and all living things in the universe. She may not be able to concentrate very well in Math, but seriously, who wants to do that anyway? (You Mathletes can put your hands down now. LOL!) 4. This is a tough one for me as I’ve struggled with body image and weight loss every day of my life… But today — and, really, every day — I am grateful for every tasty morsel of food available to me. Though it challenges me, it also means I am blessed with an abundance of food for myself and for my family, and even for my pets. I live in a society of haves. Even though I sometimes wish I had something else, something more, perhaps money to pay a personal trainer and chef like the movie stars, or money for a fancy gym membership and time to do that instead of always dealing with my challenges, my weight loss struggle means I have food. A LUXURY many people around the world do NOT have on this Thanksgiving day or any other day of their lives. Today, I pause to take a real moment to be grateful for the abundance of food on our Seder/Thanksgiving table!  We are all truly blessed! 5. I am also beyond grateful, if not sometimes a tad embarrassed by this slightly-less-decrepit-than-last-year house of mine that brings my family much more fortune than misfortune but is also not without its challenges. Built circa 1824, can you just imagine the hardships of the folks who built her (by hand, without power tools), who had to go outside to the toilet AND to cook (no indoor bathroom or kitchen), who worked from sun-up to sun-down JUST so they could eat, and who slept from physical exhaustion (not because they played too hard at the playground today) only to get up and do it all again tomorrow just to survive. Yes, I have a solid roof and walls that, although a bit drafty around the windows, are doing a great job of holding out the cold and keeping in my heat… another luxury they didn’t have in 1824. Yes, I have a bathroom (granted only one for five of us, including our 12-year-old Old Soul who has finally run our hot water heater to an early grave). But hey, our toilet flushes, it’s IN the house, and it’s not just a stinky hole in the ground with a shed around it. And, if only for today, that gasping-for-life hot water heater kicked back on after the repairman declared it DOA yesterday. For now, it’s still doing its job so there were hot showers and baths all around this morning… if not for the past three days. I’m beyond grateful and so were my family who we broke bread with today. If you know me, you know I could go on. And on. And on. And on. I have a LOT to be thankful for. But, after getting bogged down in the multitude of side dishes that had to be completed simultaneously, we should all be grateful that we had food to share today; Before we lament the last minute trip to the local supermarket for that stick of butter we were short for the stuffing, be grateful we don’t have to milk the cow then churn the butter; Before we luxuriate in the hot shower, be grateful we don’t have to boil pots of water over an open, outdoor fire just to get a luke-warm bath that the whole family has to use one after another. OMG, imagine! Yes, thank God for 2013, our limping hot water heater and hot showers too! Take a moment not just to say thank you, but to really FEEL thankful! I hope that today you consciously enjoyed the abundant gifts in your life. And, as my nephew said, “Happy Thanksgivukah everybody!”

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Thoughts on Common Core from Arne Duncan’s “White Suburban Mom”

I haven’t been blogging much… Too busy helping my children with special needs navigate the new world order of education thanks to the Common Core initiative adopted by NY state courtesy of John King et. al. But, Arne Duncan’s recent slur against us “white suburban Moms” has brought me out of my self-imposed blogging hiatus. Thanks Arne… But that’s the ONLY thanks you’ll get from the likes of me and my fellow “white suburban Moms!” Here’s what I think…

arne duncan FSecretary of Education Arne Duncan should be removed from his position along with NYS Commissioner of Education John King and, in my humble opinion, the host of other government officials who bought into this nightmare that encompasses Common Core, High Stakes Testing, Race-to-the-Top, inBloom data collection, PARCC and so much more. It’s NOT the raising of the education bar that is the problem for any of us parents or, dare I speak for them, the teachers. It’s the adoption and forced implementation via strong-arm tactics and outright monetary bribes of inappropriate, abusive, untested programs that is the problem.

In a forum of School Superintendents, Mr. Duncan was quoted as saying, “it’s fascinating to me that some of the pushback is coming from, sort of, white suburban moms who — all of a sudden — [realize] their child isn’t as brilliant as they thought they were and their school isn’t quite as good as they thought they were…” Why the superintendents in attendance didn’t stand up and boo this self-serving, inept, empty suit who not only insulted every parent in our nation — the parents these superintendents also represent — but outright insulted each and every one of them personally as well as the school districts they serve, is beyond my understanding.

Instead of hearing the concerns of parents, teachers and administrators from all over the United States, Mr. Duncan is flinging insults at white suburban mothers… insults that have ABSOLUTELY nothing to do with the concerns voiced by the parents opposed to the Common Core initiative and its tag-along initiatives. (By the way, Mr. Duncan’s pet project “Race-to-the-Top” is one of the detrimental [my adjective] initiatives opposed by many of us parents speaking out against the Common Core. )

Shut up and listen, Mr. Duncan! I don’t give a damn about my children appearing brilliant! But I do care deeply that my children receive a viable, reliable, education via tested and proven methodologies. And, THAT is where Common Core and your Race-to-the-Top initiatives FAIL!

My children are NOT your political pawns. They are not test guinea pigs for you to SELL to big business. I’m not fighting Common Core because I want my children to appear brilliant via a lesser curriculum. I am not even fighting Common Core in and of itself. I am fighting the forced implementation of an untested, age-inappropriate, NON-research-based curriculum forced on us by  state education officials — NOT educators — who were bribed by the federal government who, by the way, is NOT permitted by law to influence educational curriculums. (I wonder, Mr. Duncan, would a monetary bribe count as influencing? Because that is what Race-to-the-Top is… a bribe!). The decision to force the rapid implementation of CCSS and its tag-along initiatives without sufficient testing is one that immediately affects the well-being of MY children whose care and upbringing is my legal responsibility. So YES, Mr. Duncan, I feel I have the right to speak out in this respect. And, NO, I was never given the option to review or express my opinion or concerns before or since CCSS was implemented. (Mr. King cancelled the Long Island meetings where I might have had the after-the-fact opportunity to do so).

My concerns are not about whether my child appears brilliant based on your completely inappropriate and untested standardized assessments. I’m concerned about the Common Core Curriculum and the lack of research that support it, and about the validity, necessity, cost and effectiveness of ALL of the accompanying initiatives such as the intensive and excessive high stakes testing, the coming PARCC program (more testing), the rapid implementation of CCSS including the test-then-teach approach, the lack of accompanying professional development or preview to help the teachers with their preparation and transition to the new curriculum, the lack and/or outright absence of developed curriculum-supporting materials offered by the big businesses who were paid handsomely to support the implementation of Common Core in our schools, the lack of funds to help children deemed below par to catch up, the fact that no one has addressed the impact of any of this on the population of children with special needs who may already have been struggling academically but who are required by federal laws to be supported, the collection of my children’s personal data tied to my family’s data and the collection/dissemination of these 400+ data points (talk about scary) to inBloom without the guarantee of privacy or the opportunity to say no to the storage and sale of that data to big business for THEIR monetary profit. I’m not sure if anyone has pointed this out to you in the four years that you have served as secretary of education, Mr. Duncan, but this is a democratic republic where education is within the purview of the states w/o interference from the federal government. I find it fascinating, Mr. Duncan, that you feel at liberty to insult me when you do not even know me nor represent me or my concerns with regard to my children’s education.

Here’s a suggestion from my white suburban husband and parent to our children: why don’t we significantly increase your workload to be completed in 75 percent of the time, so you can spend the other 25 percent of your work hours to sit for these inane, high stakes tests and evaluations, as unprepared as the  students you’ve forced this on. Then, we’ll collect not only your name, address, phone number and your grade on the test, but every grade you ever achieved in education – including your elementary, middle, high school, and college grades — your professional evaluations and “reviews,” your detailed attendance and personal health records, yours and your parents’ income, your detailed school and work disciplinary record (including commentary), and nearly 400 other data points to be shared with me and the rest of the world with no data security and no promise that we won’t sell that information for profit in the future.

It might surprise you, Mr. Duncan, to find that us mothers – not just the white suburban ones but every mother from every ethnic, religious, and socio-economic background living in America’s cities, suburbs, and rural areas – whose school-age children are subjected to your education policies without voice see your insensitive and ill-informed insult as evidence that you are less-than-brilliant yourself!

Posted in Advocacy, Arne Duncan, Common Core, educating children with Down Syndrome, Education, evidenced-based practices, Grass Roots Advocacy, NY State legislation, research, Uncategorized | 5 Comments

September 11, 2001 — Looking Back!

I got that text again yesterday morning… from my sister — the one I spent September 11, 2001 with. The tears came, again. And I sent a note to the President of my company (then), who was visiting our fair city and spent that day with me and my sister, watching through our office windows as the attack unfolded and the buildings collapsed. I was 8 1/2 months pregnant with my now 11-year-old daughter. I AM reminded daily of 9/11… after all, I named her Olivia, after the olive branch, the symbol of peace.

I am taken aback every year on this day, at how the details come back with incredible clarity. The smells, the sounds,  the plane, the people, the stillness of an empty city.  My sister remembers every moment too… but she rereads my September 11th post each year to remember again. I’m reposting it , so we can ALL remember. NO, this was not just a historical terrorist attack on US soil…. It was the day when almost 3,000 PEOPLE died. Fathers, mothers, sisters, brothers, husbands, wives, children, friends, colleagues. INNOCENT PEOPLE! People we worked with, commuted with, shared a city with, shared hopes and dreams for a safe and peaceful future for ourselves and our families. A dream that lives on… May we ALL continue to strive for that dream, together!

Wishing you all peace and a sense of safety, this day and every day forward! xo Maggie

September 11, 2001

I’m not sure I can do this story justice. I’m not sure I can capture the essence of this day, 8 years ago. This photograph — with New York City’s skyline (no towers) gracing the horizon — was taken recently from Long Island’s Levy Preserve in Merrick. I live closer to NYC than this. And, I was working just one mile north of Ground Zero, in the heart of NYC, on September 11, 2001. This day of remembering has come around 7 times since living through the terrorist attacks on the World Trade Center towers. Each time it does, my emotional response catches me by surprise. No, my life is not the same as it was before September 11, 2001. Dare I say that no American’s life is the same before that fateful day. I’m sure my life is less changed than the lives of the family members of the 2,752 victims — innocent people — that lost theirs that day. I’m sure my life is less changed than those that were there at Ground Zero, running down the stairs of the 2nd tower as the first collapsed. “Survivors!” Less changed than the police officers and firemen that responded and lived to tell about it — some for only a short time, ultimately dying painfully of exposure-inflicted illnesses. But, my life is significantly changed too. Significantly.I was a corporate marketing technology executive working in lower mid-town Manhattan in a beautiful old NYC building across the park from the landmark Flat Iron Building on 23rd and Broadway. My office windows faced downtown. I loved the view of the gold domed clock tower on 14th street and the triangular Flat Iron building just outside my windows. I was 8 1/2 months pregnant on September 11, 2001, excitedly expecting my first child.I’d woken up early as the result of a disturbing dream — there was a huge forest fire and the animals had all climbed up into the trees to escape the spreading fire. They were screeching and screaming for help because they were now trapped in the tree tops with no way down. But, the fire and heat were too fierce and I could not help them. I could only watch and listen to their woeful screams as the fire engulfed them. I woke upset. On my daily commute into NYC — which I shared with my sister — I was retelling the nightmare during our usual fast-paced trek down and across town. As we made our right onto Broadway every one fell silent… a HUGE jet airplane flew overhead, engines roaring, as though it were about to set down right there in front of us. Using Broadway as its runway. I don’t know if I ever realized that planes do not fly over Manhattan until that moment when I — along with every other New Yorker on the street — stopped and stared in disbelief. My sister said quietly, “that’s going to hit something.” In the few seconds it took to disappear from sight — behind the myriad of tall buildings, the trademark of NYC — everything and every one was frozen in time. Then, life in the Big Apple continued. We reached my building and I bid my sister goodbye. I showed my identification to building security and made my way up to our corporate offices. There in our lobby, a large crowd was gathered around each of several television monitors mounted throughout the waiting area. I listened. I saw. I heard. That plane — the plane my sister and I had seen flying down Broadway — had flown right into the World Trade Center. Some of my colleagues were speculating that it was a small sized plane and I corrected them, quickly asserting that we’d just seen that very jet plane fly down Broadway not 5 minutes earlier.I wandered to my desk listening to people voicing more and more absurd theories. Among them, “a terrorist attack.” I did not, would not, could not think it true. And then the second plane crashed into the second tower. A colleague postulated that the pilot must have accidentally veered into the second tower while watching the commotion in the first… as if flying a plane was like changing lanes in an automobile. No. That couldn’t be it! What was happening? A terrorist act quickly becoming the only plausible answer. My mind went blank. BLANK. I could not think. What was going on and why? The monitors showed the lower Manhattan skyline shrouded in smoke, both towers ablaze.

I can see the two pillars of smoke rising up above the roof top of the building next to mine. I can smell the smoke. I can hear the sirens to the north of me, to the east of me, to the west of me and overwhelmingly to the south… all moving to the south. I am one short mile from Ground Zero. New York City, the city that never sleeps, is eerily silent except for the wail of sirens. I am overcome with a quiet sinking, sick sort of feeling in the pit of my stomach (it is there again even as I type this). A low grade anxiety. It’s not the panic I know the people in the towers must be experiencing, en masse. No flight response kicks in here, a mile north. I cannot make sense of it. I know what I see, what I hear, what I smell. But, I don’t understand. My mind is blank!

This goes on for I don’t know how long. Too long. The televisions blare their hypothesis, finally settling on terrorist attacks. The Pentagon has been hit. Another plane is down in Pennsylvania. There are still other planes in the air unaccounted for. No one can say for sure whether any more planes are aimed at another NYC landmark. I am surrounded by NYC landmarks. But, oddly, I feel safe here… I am in my cocoon. Out there. Outside the windows, it is not safe. I KNOW this!

The President of my company is in town from Dallas. I am the senior executive running the NY office. He finds me. He looks more worried, more confused about what’s going on than me. Maybe it’s because I’m a New Yorker… as though this sort of thing happens every day. “Welcome to our fair city” I say, making light of the situation. Honestly, it’s all we have to keep things together. No one is breaking down. People are doing. Moving. Making decisions. I give instructions to all of my employees to leave immediately… Get off the island of Manhattan as quickly as possible before anything else happens. Before every one else in NYC has the same idea. I’m sure I’m not the first. But, the work ethic here dictates that many will wait and see if this is real. To see if they can get something done before…. Before what? I don’t know. Two of my employees are from “Jersey.” One is 3 months pregnant. She’s barely showing. I send them together, encouraging them to use the pregnancy as an excuse to get themselves on the ferry more quickly. “Push your stomach out, Kerrie, and get going.” I later find out that worked. They were home quickly. Safely.

Time is passing slowly. It feels like I’ve barely just arrived. The phone is ringing. It’s my sister who is adamant that I should not leave, not go anywhere without her. I explain that we’re staying here. The head of our parent company has ordered in food for those few of us who have no where to go. No way to leave. The Long Island Rail Road has already shut down. And, at 8 1/2 months pregnant, I’m not prepared to head downtown towards the chaos to walk across the Brooklyn Bridge like thousands of others fleeing the city. It wouldn’t be good for me, for the baby, to be jostled about in a large and panicked crowd. Not good to inhale the questionable air down town. I decide… we decide together, my sister and I… that we’ll wait it out. Stay put for now. She walks back over to my office where she left me not long ago, so we can be together. Whatever happens, we’re together. That’s a good thing. Finally, we get in touch with family members, but just barely before all the phone lines go dead. The cell phones are mostly not working — too much network traffic, people trying to reach their loved ones — but my phone connects and I’m able to assure my husband and another of my sisters that we are ok. We are together and safe! Safe? Who knows, for sure?

Initially we mingled with my coworkers but the mood and comments were… weird… uncomfortable. So my sister, my boss and I, took to a private conference room, south facing so we could watch. Watch the smoke rise from the damaged towers. And we knew, we could tell, when the first tower collapsed, by the sudden mushroom cloud of billowing smoke. Then the second. This was real life happening right before our very eyes. Not at all like watching it on television.

The day dragged on — the smoke rose up into the sky, the news reports continued, I tried to do some work to no avail — until it was nearly 5:00 pm when things seemed to have… not calmed down exactly. There was no lull. Or, maybe that’s all it was all day… a lull. Nothing had returned to “normal.” It never would. It just seemed like the right time to go. I guess it felt as close to normal as it could. Nearly the time we would have left work… before 9/11. Before the terrorist attacks on the Twin Towers. We heard that the LIRR was running hourly trains again to help straggling commuters get out. Perhaps that was why we ventured out finally.

The people of New York City were gone… No one! Except for my sister and I. And, one lone photographer, his back to us, kneeling in the middle of Broadway where just hours before a jet plane roared too closely overhead. He had a huge lens on his camera and was shooting straight down the street into lower Manhattan where the building tops were clouded in thick grey smoke. Down a street that would have “normally” been congested with cars, buses, taxi cabs and people. People all over the place. But not today. Not September 11, 2001.

We walked — like the Simon & Garfunkel song says — amidst the sounds of silence in an otherwise noisy city. (Apropos lyrics.) We kept our New York City pace though there was no real reason for it. Maybe again, shooting for something close to “normal.” In Penn Station, there were almost no people, very few riders. A handful, maybe. Most every one had run for their lives earlier in the day. I honestly do not remember the train ride home. Uneventful, I guess, which is a strange way to describe any part of that day. It was wholly the most eventful day of my life!

When I got home, I shed my first tears. Quietly… amidst the sounds of silence. I have shed many since remembering this day over the past 8 years. Remembering and crying… always quietly.

It was fortunate that the wind blew from North to South that day 8 years ago. I guess that’s why we never actually HEARD the plane hit the Tower. The noise traveled south with the wind. The same way the smoke travelled. I had two cousins working in the Towers that day. Both survived. One, already late for a meeting, walked into the lobby but at the last minute decided to go back out for coffee. All of her colleagues perished. The other descended the fiery stairwell with hundreds of others. He survived the day and then moved away from New York. It was the second time he’d survived an attack on the Towers… He was there for the ’93 bombing; and after September 11, 2001, he decided not to tempt fate again. He now resides happily in Connecticut. He ventures no where near the big city or important landmark buildings that could be targeted by senseless acts of terrorism.By Friday I was back to work. We all were. Just 3 days after the attacks acting as if… as if things were back to normal. 42 days after that fateful day, I gave birth to a healthy baby girl. We named her Olivia… after the olive branch representing peace. We thought it appropriate. She is my peace. An old soul. I worked in NYC another year before I left to be a stay-at-home-Mom. I also have identical twin boys now who happen to have been blessed with an extra 21st chromosome (aka Down syndrome). They fill my days with love and laughter. I am truly blessed. I laugh and smile all day long, every day… Except for this day each year, as vivid memories come flooding back. The forest animals are screaming — the sirens are wailing — and I cannot help them. Each year, they perish again.
I still live a mere 25 miles outside of the Midtown Tunnel. I love New York City and visit it frequently. I assume that when I return to the work force after my stint as a stay-at-home-mom that I will do so in the greatest city in the world. New York! Mostly, I feel safe there. And, safe here (living so close). But, there is an underlying sense of unease that it could happen again. That I might not be so lucky next time. It’s sort of always there with me, in the pit of my stomach. I guess that’s why my cousin left.So, what has changed? Me! My world! My thoughts about what’s possible. I cannot look at a plane flying overhead without remembering that plane. I cannot look at the beautiful Manhattan skyline without seeing what is no longer there. My heart is full of respect for all New Yorkers. For the NYPD, FDNY, Mayor Giuliani, my supervisors and colleagues, fellow commuters, and City-dwellers who all calmly held down the fort while we were under attack. Who all did what had to be done. Helping each other get through the worst day in the history of New York. My husband joined NYPD after the September 11th attacks in New York City. He knew full well what he was getting into when he took his oath. He knew what the worst case scenario could be and accepted the responsibility. We are all New Yorkers. We are tough. We can survive absolutely anything… can’t we? Surely, we have proven that!As a people, we are forever changed. We will never forget! I will never forget a single moment of that day… Like it was yesterday. Not a single second that passed as my new baby kicked inside me. Every breath I took, every emotion that seared my heart, every blink of my eye… Because I know things can change that quickly. In our post-9/11 world, I recognize this and take nothing for granted. I am thankful for what I have. That I and all my loved ones survived. I’m sorry, devastatingly sorry, for all those who lost so much that day.We all lost something that day! We lost what it feels like to be safe. To see a plane as just a plane… not a potential weapon. A building as just a building… not a potential target. A person as just a person not a potential terrorist — someone who would hijack a plane and kill thousands of innocent people. Or a potential victim — a name on a wall to be called out by their loved ones years later. To be remembered as part of one of the worst days in American history. No, I will never forget. And, yes, I am changed! Significantly changed.

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You Know It’s Summer When…

In the movie “Hotel Transylvania” a young boy teases Count Dracula, saying, “Blah Blah Blah Blah Blah” mimicking his famous Transylvanian accent. Drac replies, “I don’t say ‘Blah Blah Blah Blah Blah.'” in exactly the same way the boy had teased.  So, here’s my blah blah blah… While I miss blogging, I’ve been too busy living my life up close and personal to find the “free” time to sit in front of the computer. Maybe it was that PTA Co-chair commitment (thankfully, over now) or perhaps it’s just the natural life cycle of blogging. Don’t know for sure but I often find myself WANTING to be here… Sadly, blogging is an entry too low on my WISH List even as my To Do list flow-eth over. So blah blah blah blah blah. With the excuses out of the way….

 *                    *                ON TO SUMMER!                 *                    *

YES, SUMMER IS OFFICIALLY HERE! School is out and the solstice is upon us. There are a few things near and dear to my heart that scream summer to me like nothing else. Last night, I had the pleasure of attending a free outdoor lawn concert — and it made me want to share all that I LOVE and anticipate about summer.

Blues Traveler played a free concert at Eisenhower Park last night! Fifteen years ago, Lou and I saw this still-rockin’ band at Red Rocks stadium in Colorado for the 4th of July! And, it was just as sweet hearing the sound of John Popper’s harmonica again, this time with my children. Summer sure is off to a good start! My children and hubby sat in their lawn chairs eating a bucket of Kentucky Fried Chicken propped on my lawn-chair-turned-serving table while I sat in the grass wishing I’d brought my camera! We kicked and volleyed a giant beach soccer ball in a family circle, and helped my Big Little Men perfect the drop-kick. We strolled leisurely around the lake — in the shadow of the Nassau County September 11th Memorial and watched the swallows swoop and dive for the evening bugs. My Little Man — perhaps still a bit traumatized by his Disney shark tank snorkeling expedition — asked, pointing, “Mommy, sharks in here?” “No” I reassured him… “not very big ones anyway!” That pretty much guaranteed he and his brother wouldn’t take a dip in the lake! LOL

The scent of “Family Off” wafted in the wind, barely — but thankfully — drowning out the sweet smell of cannabis from the group nearby celebrating summer in their own special way. My Old Soul caught her first lightning bug of the season… a friendly little fella who found sitting on the tip of her finger signaling to prospective mates preferable to his labor-intensive flight… until small flashes in the dusk light caught his attention and he flew off to get in the game.

Yes, we are getting in the game this year too! I’ve already marked my calendar with every free outdoor summer concert within a 25 mile radius that I deem worthy of dragging my family out at night for. Like last night, I’m pretty sure every other member of my family thought they’d rather spend the evening winding down — The Boys watching Drake & Josh reruns, the Old Soul watching Transformers Prime on Netflix and DH aimlessly cruising the worldwide web on The Boys’ iPad — with absolutely NO ONE thinking about getting up for school in the morning! But I know from experience that, as a family, we can’t go wrong being outdoors and listening to good music… Besides, LIVE is so much better than Memorex (remember that now obsolete 80’s cassette tape commercial?)!

IMGP1071Of course, summer is not summer without the squeal and splash of backyard swimming pools. And, we add our laughter to the cacophony of summer daily! My kids have been swimming nearly every day — yes, even in the rain (as long as there’s no thunder and lightning) — since the pool opened over a week ago. As soon as the pool ladder was tossed over the wall, after school swimming replaced homework assignments and the conversation changed from “You have to finish your homework!” to, “You have to get out of the pool and have dinner before bedtime!” Even at home, though, my Little Man asks every single day before taking that plunge, “Mommy, sharks in here?” I’m not sure how he’s going to feel about going to the beach and swimming in the ocean this summer… but if I hope to help him get over his fear of sharks, I guess I’m going to have to stop joking about it. (BTW – nothing bad actually happened in the shark tank except his mask flooded and, as a result, he tried to climb my head out of the pool LOL.)

As my kids dive for deep-sea treasures and leap off the ladder onto floating islands, I abandon my To Do list and give in to perusing my unread back issues of DIY magazine at the poolside table in search of how-to ideas to fix-up this old house, or to pulling weeds between the patio bricks and tending our flower pots while watching the kids swim. But when it gets really hot, I’ll float amongst my children with the newest copy of “O” unfazed by the water droplets wrinkling the pages. My Blue Heaven!

Between the smell of sunscreen, barbeques and fire pits, and the sound of Big Time Rush, One Direction, and Kelly Clarkson emanating from the Old Soul’s iPod in the window, dogs barking happily, cats sitting in open windows and the  (hopefully) distant hum of landscapers beautifying the neighborhood, I am a happy camper. Speaking of that, with several northeastern camping excursions — including Niagara Falls — spattered across our summer calendar, I’m prepping the pop-up and we’ll be outdoors, barbecuing, riding bikes and relaxing in nature in and outside of our own backyard for the next 2+ months!

And, just for the record, Down syndrome did not attend the concert with us. Attention Deficit wasn’t there either… Not for us! It was just me, my hubby, the kids and John Popper’s harmonicas taking in the evening moon glow, keeping company with the lightning bugs. Yes, I do LOVE the carefree days and leisurely nights of summertime! How about you? How do YOU honor the summer season?

Posted in attention deficit, Down syndrome, happiness, having fun, Uncategorized | Leave a comment

Down Syndrome is Now Just Our Backstory

OLYMPUS DIGITAL CAMERASomewhere along the way Down syndrome has sort of faded into the background of our existence. Life, as it pertains to The Boys, has stopped being about the role Down syndrome plays in the issue-d’-jour and has become, instead, about My Beautiful Little Men! About who they are and the amazing Little Men they are becoming. About what they need and what THEY want. About living a regular ol’ life…

just like everyone else!

I know that sounds strange and every mother, myself included, would rightfully insist it’s always been all about The Boys… not ever about the diagnosis. And while that’s absolutely true — it HAS always been about MY children… Always — it feels somehow a bit different now. I can’t tell you exactly what, when, how or why it happened. For all I know, it might have been when they turned two and I just missed the turning point while I was understandably immersed in living our lives.  It certainly didn’t happen suddenly like an ah-ha! moment. I’m sure it was a gradual transition. A rounding of the bend sort of feeling, and then we just arrived…. Here!

Perhaps the transition started when their primary health issues — albeit minor — abated and I didn’t have to worry so much on a daily basis. And then a little bit more when we finally got fully and comfortably potty-trained. Then, perhaps we took another step toward “here” when The Boys started first grade in the school around the corner, with their sister, in a class of their typically developing peers, with appropriate support and friends who love them and who they love right back. Maybe we pushed on through when the phone started ringing for play dates. And then, suddenly, My Boys just became Brian and Michael and we found ourselves just living our lives… not noticing the change.

It hit me this morning as I sat down to write (something I’ve been missing lately). As I explored the potential insights I might share with those who follow in my footsteps, parenting a child (or two) with Down syndrome, I realized that Down syndrome is no longer occupying space in my consciousness anymore. Oh, it’s still there… back in the corner next to pneumonia. And, yes, I continue to advocate for my two Beautiful Boys who happened to have been born with an extra 21st chromosome and for anyone else who wants to chat about how we got here. BUT, on a day-to-day, livin’-our-life basis, whatever issues may arise are dealt with from the perspective of the Little Man in question and the issue at hand, not from the starting point of Down syndrome and the role it may or may not play in impacting My Boys’ lives. It’s just no longer about how Down syndrome may or may not play into whatever issue we are in the process of resolving. It’s just about the kid, about the symptom, about the solution, but NOT about Down syndrome.

Heck, I’m not even sure I, or anyone that really knows them, even sees the Down syndrome anymore. It’s just two Big Little Men growing up big and strong and healthy. And when a challenge arises, we deal with it. Once in a while I’m reminded that Down syndrome may be an underlying factor affecting my children. (Often because some well-meaning but under-educated person refers to them as “Downs kids.”) But it sure feels GOOD to not be focused on the diagnosis  or how it will, has or might affect My Little Men yesterday, today, tomorrow or any time in the future. Today we live our lives like everyone else, and when we hit a bump in the road we ask, “WHAT is it and how do I get over it?” It’s liberating!

*          *        *

OLYMPUS DIGITAL CAMERAOn Sunday, My Boys turn eight. EIGHT! Every year I reminisce about that day… 2,920 days ago. The day My Beautiful Little Men graced the earth, and our family, with their presence. It’s not the day they came to live with us… THAT took several weeks more.

The silent fear that gripped me that day has faded like the pain of childbirth. It mostly eludes me now. Mostly… thankfully!

Eight years ago on Sunday I hadn’t felt The Babies move in two days. We knew nothing of their as-yet-undiagnosed Down syndrome but the concerns expressed by all but one of the doctors and one of the techs plagued me. Their highly informed medical opinions included microcephaly, hydrocephaly, viral infections in their brains and more, none having anything to do with DS which wasn’t on anyone’s radar (or sonogram).  The doctors’ words — “still-born”, “vegetative state” and “painful death” niggled at my nerve endings. I was 32 weeks pregnant and more than HUGE. I prayed My Babies were just over-crowded in there, with less room to move about as they, and I, grew. That often happens towards the end of a pregnancy though I wasn’t at the end, per se.  But, there were two babies so I reasoned against the doctor’s educated guesses. Then, before bed, I spotted bright red blood.  In the pregnancy realm…. that’s NOT good! Calmly, I told the hubby and called the midwife. She said what I knew she would… go NOW to the hospital and get on the monitor to make sure the babies weren’t in distress. At 9pm I left “Lou” and the Old Soul promising, “Mommy will be right back.”

I wasn’t!

Our Birth Story: How Down Syndrome Came to Grace My Life, 12 Hours of Reckoning, and

Posted in acceptance, Birth Story, Down syndrome, motherhood | Leave a comment

In Remembrance of Ethan Saylor: Take a Moment to Save A Life

Ethan Saylor’s death is NOT going away… and it shouldn’t!!!

Thursday is a Facebook Show-of-Solidarity event in honor of Ethan Saylor, the 26-year-old young man who died of positional asphyxiation on January 12 when shopping mall security guards (moonlighting police officers) placed him face down on the floor of a movie theatre, handcuffed him with his hands behind his back and left him in that position where he went into cardiac arrest and died. THAT is the pertinent information.

The FACT that Ethan had Down syndrome doesn’t change the FACT that the officers are supposed to move a handcuffed prisoner out of the prone position IMMEDIATELY after handcuffing TO AVOID POSITIONAL ASPHYXIATION — STANDARD POLICE OPERATING PROCEDURE!

The FACT that Ethan was overweight or that he had a heart condition (like so many other people) doesn’t change the FACT that the officers are supposed to move a handcuffed prisoner out of the prone position IMMEDIATELY after handcuffing TO AVOID POSITIONAL ASPHYXIATION — STANDARD POLICE OPERATING PROCEDURE!

The FACT that Ethan didn’t like to be touched and resisted the SECURITY GUARDS physical effort to get him to go against the instructions his aide gave him to stay put until she returned doesn’t change the FACT that the officers are supposed to move a handcuffed prisoner out of the prone position IMMEDIATELY after handcuffing TO AVOID POSITIONAL ASPHYXIATION — STANDARD POLICE OPERATING PROCEDURE!

Perhaps — And I said PERHAPS — the officers security guards followed standard police procedure to arrest someone who was resisting arrest by placing the perpetrator face down and handcuffing them but they FAILED to complete the procedure to move the handcuffed “prisoner” out of the prone position IMMEDIATELY TO AVOID POSITIONAL ASPHYXIATION — STANDARD POLICE OPERATING PROCEDURE!

Never mind that referring to Ethan as a “perpetrator” sounds and IS bizarre when he simply wanted to watch a movie again AND was told by his aide to stay put.

Never mind that referring to Ethan as a “prisoner” sounds and IS bizarre considering his CRIME was to stay put as he was told by his aide AND reacting to being touched when the SECURITY GUARDS (I keep capping that because they sure as hell weren’t acting as trained peacekeeping officers of the law that fateful day) escalated what was a peaceful situation to physical force.


When did these security guards employ ANY police training — or BASIC COMMON SENSE for that matter — in identifying a person with special needs that perhaps warranted special handling?

WHEN did these SECURITY GUARDS employ ANY POLICE TRAINING — or BASIC COMMON SENSE for that matter — to prevent this peaceful disagreement from escalating to physical violence?

Never mind that they CREATED the violent response.

Never mind that they disregarded the special needs.

Never mind that they did NOT examine the situation and get the story from all parties involved before taking action. Instead they took the word of the theatre employee (did that have anything to do with who pays their moonlighting paycheck?). They didn’t take the time to understand the situation from Ethan’s point of view, from Ethan’s aide, or from witnesses to the disagreement before they took action. They did what they were told to do by the theatre employee: remove Ethan from the theatre. Sounds like poor police judgement/action along with a possible conflict of interest. That is, they acted as mall security and followed the instructions of the theatre employee versus following STANDARD POLICE PROCEDURE.

Did they really attempt to get Ethan’s side of the story? Had they done so,  they surely would have determined that Ethan was upset and did not fully understand the situation… Which would have lead to talking to Ethan’s aide WHO WAS PRESENT BUT DISREGARDED! Which would have lead to waiting a few minutes for Ethan’s mother to arrive.

But that’s not what happened!


Ethan’s weight has NO BEARING on the actions taken by those SECURITY GUARDS! How much he weighs doesn’t translate to USE PHYSICAL FORCE without understanding the situation first!

Ethan’s heart condition DOESN’T CHANGE the incomplete implementation of STANDARD POLICE PROCEDURE in this situation!

Clearly, those three men were acting as paid SECURITY GUARDS NOT trained peacekeeping police officers! They employed poor police judgement and took unreasonable police action when they escalated to physical force without fully understanding the situation AND when they IGNORED the 2nd half of the police restraint procedure which is to REPOSITION PRISONER IMMEDIATELY TO AVOID POSITIONAL ASPHYXIATION!

In the LEAST, there should be an independent investigation to look honestly at the actions taken by these police officers… Versus the Frederick, MD police force conducting a self-investigation and decided their officers acted appropriately and it was the Down syndrome that killed Ethan Saylor.

Last time I checked, Down syndrome isn’t fatal. And I should know because I have two children with Down syndrome (identical twin boys)

Seriously, the FACT that Ethan Saylor had Down syndrome — and any factors that may or may not accompany that diagnosis, like being overweight (along with half the country) or having a heart condition (not exclusive to folks with DS) — does NOT CHANGE the inappropriate actions of the three officers who did not gather all the facts, did not keep the peace but rather escalated the situation to physical force by their actions, and did not PROPERLY employ standard police practice (reposition after handcuffing), all of which caused the death of Ethan Saylor.

If you agree that there are at least SOME outstanding questions regarding the way these moonlighting police officer/security guards handled the situation then please consider signing this petition asking for an independent investigation into this horrible tragedy… I say please because I don’t want to anything like this to happen to My Boys or anyone elses’ children with or without Down syndrome.

In addition, tomorrow there is a Facebook Show-of-Solidarity on Down Syndrome Uprising in remembrance of Ethan Saylor.

Posted in Uncategorized | Leave a comment

Robert Ethan Saylor: A Death in the Down Syndrome Community

As I begin to write this I acknowledge it’s going to be a stream of thought — of consciousness and subconsciousness — that will ramble about and around a massively controversial subject that I am torn up over and conflicted about in ways I cannot adequately explain.

Victim Robert Saylor

Victim Robert Saylor

For those who haven’t heard — and I’m sure there are SO MANY, especially those not involved with the Down syndrome community — Robert Ethan Saylor was a 26-year-young man who was asphyxiated to death when three off-duty police officers moonlighting as shopping mall security guards physically restrained him when he failed to comply with their request to leave a mall movie theatre in Frederick, MD in January. Ethan simply wanted to stay and watch a second showing of the movie he’d just seen. Unfortunately, he hadn’t paid for the approximately $10 ticket for the second showing and, we can only assume, refused to leave when asked… and that is when the security guards’ use of physical force ended his life.

The FACT that the THREE security guards were off-duty police officers made me ERRONEOUSLY THINK they were trained to handle what the NYPD calls an EDP — Emotionally Disturbed Person. Apparently, they WEREN’T trained! Yes, here in NY Ethan would have quickly been identified as an EDP and would have been handled, I HOPE and PRAY, differently. Sadly, for Ethan, with what appears from witness accounts to have included very little verbal coaxing, the situation rapidly turned physical and the three adult male officers physically forced Ethan down to a prone position laying on his stomach with his hands handcuffed behind his back. Within two minutes — during which he was apparently yelling and gasping for his mom to help him — Ethan suffocated, went into cardiac arrest and died.

Face-down and handcuffed behind the back is a pretty standard police procedure. We’ve ALL seen it in the cops-and-robbers movies! We’ve seen it used in rioting situations on the news! But, did you know that part of that procedure is to “reposition the individual at the earliest possible opportunity (read: immediately) to avoid positional asphyxiation and promote free breathing.” DID ANY ONE OF US WITH A LOVED ONE WITH DOWN SYNDROME EVER THINK THAT THIS PROCEDURE COULD CAUSE THE DEATH OF OUR CHILD? Absolutely NOT!

A narrower-than-normal, often-restricted airway (adenoids/tonsils); smaller oral cavity; low muscle tone (in the lungs, throat, chest); and excess weight in the chest/abdominal area, AS WELL AS a propensity for less-than-perfect/unintelligible speech, especially under duress, are all more-than-likely contributing factors to poor Ethan’s awful and rapid death… ALL ARE COMMON CHARACTERISTICS OF A PERSON WITH DOWN SYNDROME! Did those officers know this? NOT LIKELY, unless they have or know a child/person with Down syndrome. Had they EVER met a person with Down syndrome? Dare I say NOT LIKELY. Because if they HAD, they would LIKELY have been familiar with their generally agreeable personality and would have EASILY been able to talk Ethan out of his seat in that movie theatre! HELL, if my husband were one of those officers, he’d LIKELY have handed the movie theatre owner the TEN DOLLARS to let Ethan see the film again!!!!

SERIOUSLY, Robert Ethan Saylor lost his life over the price of a movie theatre ticket?  I absolutely GET IT that ALL people — with and without disabilities — are expected to follow the rules of society. He was NOT entitled to stay and see the movie again… even if he paid for the ticket because maybe there was a line of people out the door and through the mall waiting to see that movie. Maybe not. And, did any of them actually get to see the film after the mishandling and death of Robert Ethan Saylor? NOT LIKELY!

I also whole-heartedly BELIEVE that it’s the historical practice of segregating people with disabilities from the general population for most of the last decade that has robbed our society of not only recognition but familiarity with and compassion for people with disabilities. And, while that’s MY soapbox, SERIOUSLY, what rock must one live under to NOT recognize the face of Down syndrome in this day and age? I KNEW WHAT DOWN SYNDROME looked like before I had My Boys who happened to have been BLESSED with an extra 21st chromosome! I’m SURE I would have known how to better deal with Ethan in that situation than those “trained” police officers/security guards!

And what about Robert Ethan Saylor’s aide who, according to news reports, was “nearby” while all this was going on? How could his aide NOT be versed enough on Down syndrome and/or familiar enough with Ethan to talk him into a better mindset and/or talk security guards into handling it different… like maybe waiting for his mother who I KNOW FOR SURE could have diffused the situation instantly… without causing his death!

If the parties involved and/or the powers that be [read: mall security and theatre management] had ANY knowledge of or about Down syndrome — even outdated misconceptions — THAT information should have warranted special handling. It sounds to me — and to others trained in police procedure with whom I discussed this personally-disturbing case — that the situation SHOULD have been handled very differently. It appears that, even with the limited information we have, there were a number of standard police tactics that, if they had been employed (they weren’t) COULD have avoided the use of physical force and would have avoided Ethan’s death. If the situation was contained such that Ethan could remain in his seat without hurting himself or others until his mother arrived then it should NEVER have escalated. He had no weapon! There was no immediate threat to leaving him in his seat until his mother arrived. There was an aide present that could potentially offer information pertinent to Ethan’s condition and ability to understand and comply with security’s requests! Was theatre management pushing the paid security guards to remove Ethan because of monetary concerns (as in, “get him out so paid customers can come in and we can stay on schedule”)? Did the mall security guards act on behalf of theatre management (remove Ethan now) OR as police officers (peacefully resolve the situation)?

Note to Self [and to EVERY mother of a child with Down Syndrome]: Make sure EVERYONE involved with My BEAUTIFUL Boys — who, did I mention, happen to have Down syndrome — is well-versed in the syndrome and its potential effects on my children,  in how they communicate their needs, stand as an advocate for them, and to diffuse a volatile situation should one arise. NO EASY TASK but, apparently, one that is absolutely necessary for their survival in our historically segregated, rush-to-a-physical-solution society.

Did Ethan try to communicate his needs and wants to the security guards before the disagreement escalated? I don’t know. If he did, could the security guards NOT understand him and so the situation worsened? I don’t know. Did the security guards know they were dealing with someone with Down syndrome, someone with an intellectual disability? Or whether Ethan could understand what they were asking him to do and why? Again, I don’t know. Did Robert Ethan Saylor fight the security guards (because of that lack of understanding) and so they used physical force to subdue him? I don’t know. Did the disturbance go on for a significantly long-enough time to warrant physical intervention? I don’t know. Did the aide try to intervene but the security guards didn’t listen? Again, I don’t know. Was the aide trained to handle such situations but was disregarded by the security guards? Don’t know. What we do know is that Robert Ethan Saylor had Down syndrome, was intellectually impaired and that his life was taken from him — a “homicide” according to the coroner — by his assailants.

As we form our opinions of this situation, we are limited by the documentation being released, the media coverage, and media/police/judicial and our own bias. BUT, no matter how this horribly unfortunate incident went down there is a mother who lost her beloved son… and THAT didn’t have to and should not have happened!

The FACT that a person with Down syndrome may be more prone to asphyxiation should ABSOLUTELY be shared with ALL police departments around the country and world. As a result of this tragedy, the National Down Syndrome Society (NDSS) is creating a written document/policy outlining the appropriate handling of such a situation involving people with Down syndrome. THIS is something we should ALL ensure is NOT ONLY distributed to our local police forces, but trained to and enforced.  ALL police departments should be made to mandate training in how to identify and handle a situation that involves an emotionally disturbed person INCLUDING one who may be intellectually disabled. AND, finally, there should be checks in place that preclude any police organization from having the responsibility for self-policing and/or self-judging whether the circumstances and handling of any case called under scrutiny for review are appropriate or not, negligent or not. Bias naturally interferes with an unbiased outcome! Any and all of these steps MIGHT have saved Robert Ethan Saylor’s life… so that he could have lived to see another day and another showing of the movie he wanted to see again… Zero Dark Thirty! Implementing the last step could prevent it from happening again.

I know that if it was MY SON lying dead, face-down in a movie theatre aisle at the hands of insufficiently-trained, off-duty police officers moonlighting as mall security, I would be beyond inconsolable, BEYOND IRATE! In truth, I’d be going for the jugular! I KNOW My Boys would NEVER warrant that kind of treatment.  And I would NEVER rest until I ensured that the mishandling was addressed, that the police in my area (and everywhere) were better trained. I would do everything I could to ensure that every parent of a child with Down syndrome KNEW of the dangers of such a situation and I would do everything I could to make sure it didn’t — couldn’t — happen to THEIR child. Let’s all do whatever we can — no matter how small the gesture seems — to make sure it NEVER happens to another member of our community… through publicity, advocacy and pro-active policy change! This tragedy has befallen Ethan and the Saylor family. It COULD have been — and next time might be — ANY of our children with Down syndrome.

How do you feel and what do you think about the death of Robert Ethan Saylor? Should the police department self-police? What do you suggest we do to prevent this from happening to anyone else?

More Reading:, Enjoying the Small Things, NY Times Opinion-Pages

Posted in Advocacy, challenges, compassion, Down syndrome, Down Syndrome Advocacy, Down Syndrome awareness, NDSS, parent advocate, Segregation | 3 Comments