Whose Name Is It Anyway?

My sister named her first-born son Isaac. It means, “he laughs.” Though not very common, suddenly, that became the most beautiful twinsonolargename I’d ever heard. Nearly 17 years later, I found myself challenged with the task of choosing not one but FOUR suitable names when the midwife shockingly declared… “TWINS!”

After I picked myself up off the floor, I realized I would have to come up with TWO go-together names for girls, TWO go-together names for boys, as well as two go-together names for a boy and girl… just in case. You see, I LOVE a surprise and there was no chance I would spoil the best surprise God gifts us parents… the gender of our as yet unborn children! I recognized that choosing names was no small task considering “Lou” and I had only managed to settle on ONE name for our first child. Thank GOD she was a girl because we’d chosen Olivia… and nothing else. We’d have looked very foolish if the midwife had announced, “it’s a boy!”

Once the concept of meaning took root, I could not name my children without taking it into consideration. The name had to represent something meaningful… to me at least. Olivia means “from the olive branch; representing peace/the dove [of peace.]” Born just weeks after 9/11 it seemed appropriate and has proven to be an auspicious choice for my Old Soul. Choosing names for My “Twins” who we did not know would be boys, was a bit tougher. There were so many first names to choose from but as I went through the alphabet, identifying all the possible names I could think of, none of their meanings resonated with me.

I won’t go into what names — or, more pointedly, what meanings — I discarded lest I insult someone whose child carries a name I rejected for having a less-than-significant meaning FOR ME. But, as an example I would just like to throw out for your consideration a name that I LOVE but that, in writing, poses pronunciation challenges I would not wish upon my worst enemy’s child… Colon. Enough said, right? So, we finally Mag Phone Pics 0219 351settled on Brian with an i, (traditional) which means “Strong, Soldier of God.” Then, darn it, I had to acknowledge to my husband that, like half of the population in the United States, I LOVE the name Michael. However, because of its popularity, I stoically decided to forego choosing that name because “everyone has a Michael” and endless Moms told me that the name is a curse… every child named Michael tends toward… to be kind, let’s call it rambunctiousness. But, my cousin, whose son is also named Michael, said, “So there are other Michaels! Who cares? If that’s the name you love, why shouldn’t you have a Michael of your own?” True… so I looked up the meaning of the name Michael and discovered this, “Michael: resembles the face of God!” DONE! Brian and Michael it is.

2011 Feb-July 844Yes, I now have my very own Michael. And, he is anything but rambunctious. Actually, there are times that he is so beyond peaceful that he looks almost smooth from the inside out; Just like, I imagine, the face of God!

In kindergarten I thought having him write “Mike” on all of his papers would help accelerate his success in achieving the name-writing milestone and perhaps ease his load given the challenges I knew he would already face as a result of his extra 21st chromosome (aka. Down syndrome). And, I figured it would likely be the cool, teen nickname he would come to prefer anyway. But, I LOVE the name Michael and often refer to him in the proper. Sadly, HE has decided he does NOT love the name Michael.  Every time I call him Michael, he quickly corrects me, “Mom, it’s MIKE! JUST Mike!… I like Mike!” I defer to his preference; after all, it IS HIS name. Then, after being corrected again, I said to him, “Mikey, I am your mother and I chose the name Michael because I think it’s just the most beautiful name for the most beautiful boy.” To which he stubbornly shook his head and responded, “just Mike!” So I closed my eyes and lifted my face up to heaven, with my hands clasped in prayer I said, “Please God, help my son Michael understand that he has the most beautiful name in the world  and that I, as his mother, should get to call him by it every once in a while.” I opened my eyes and longingly looked over at my son Mike. He promptly turned his smooth, God-like face to heaven, and with his eyes scrunched tightly closed, folded his hands in front of him and with all earnestness said, “Please God, JUST MIKE!”


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Hot Cars, Hotter Kids, Scary Story

>5MFSN Visitors

My Young Men & Old Soul in days past

A friend once emailed me a slide show of bad parenting moments caught on camera with the caption, “some people just shouldn’t have kids!” My response was… “Thank GOD there was no camera around to capture my worst parenting moments!” None of us are perfect and we all make mistakes…. I should say, I’m not perfect and I make mistakes! And, at least some of the time, we humans are victims of FREAK situations that may look like negligence…. but they’re not. Those moments are learning opportunities for us all… only if we share them.

Several weeks ago, an 11-year-old child passed of heat stroke in a very hot car on a very hot day. The article alluded to special needs. But, before I learned the details, the story seemed to have been swept away, unfinished, in the current of life. Kind of like seeing an ad for “The Meg!” If you don’t live near the ocean, and you don’t buy that movie ticket, you watch in horror for a moment, and then life goes on. It has little to do with you…. until it does. But, I DO live near the ocean, so this particular story hit home, metaphorically and then literally for me. I HAVE three children with special needs — two of whom are 13-year-old identical twin boys Young Men with Down syndrome…. And, one day, we had a very hot car and a BIG SCARE!

A few weeks ago, during the dog-days of August, our part of the world got unusually hot, reaching almost 102 degrees outside. My poor Old Soul,  my Daughter, was at marching band camp for the first day of a week-long intensive  program, slathered with sunscreen, and shielded from the sun only by a baseball cap with an American flag on it. She texted me midday to say she forgot the forms she needed to pick up her uniform after camp, explaining she could wait until tomorrow (a process I knew from experience would take even longer the next day). Instead, I said we’d bring the forms and My Young Men and I would wait for her. We are, in fact, quite used to waiting because my Old Soul’s disability is Attention Deficit Hyperactivity Disorder — Inattentive Type (ADHD-I)… that is, no H, but a LOT of I.  For us, it also means, in addition to lack of focus, she is time-blind. 10 minutes or 100… it’s all the same to her. (We once drove to Disney. It took 3 days with stops. When we pulled into the hotel property, she looked up and said, “Wow, that was fast!”)

On this incredibly hot day, the Young Men and I arrived at 3:00 pm, handed the Old Soul her forms, and asked her to hurry (a word she doesn’t understand; she once said to me, “OH, hurry means go fast? I thought it just meant to keep going!”). And, so we waited. As the rest of the band members began to straggle out, fellow Band Moms congregated to chat about the upcoming, 8-week-long, intensive band season ahead of our kids… and US! I left the AC blasting, Imagine Dragons playing on the CD player, and The Young Men happily singing along, to stand 10 feet away from the front of my vehicle, with my Young Men in my full view, to chat with the other Moms. As is often the case, 10 minutes turned into the dreaded 100+ minute wait. And, an hour and a half later, My Old Soul came sauntering out (meaning she was NOT hurrying… pattern?), sweating and apologizing profusely for taking so long. She looked as though she’d gone swimming, so drenched in sweat. It was 4:40 pm! She went straight to the car to stow her trombone (first female trombonist in our marching band in 16 years… you go girl!) and opened the sliding doors to be hit with a WALL OF SUFFOCATING HEAT!

“OMG! MOM! It’s COOKING in here!”

The Young Men had laid their seats back and fell asleep, as they so often do waiting for their sister. Awakened by her yelling to me, I heard my Young Men mumble groggily, “Olivia, why did you take too LONG!” I ran the 10 feet over to the car to find it was stifling, who-knows-the-temperature, unbearably HOT inside. I opened both sliding doors, and was able to quickly rouse The Boys wide awake — They’re Boys when something scary happens. I asked them why they didn’t TELL ME it was hot in the car and my Big Guy pointed at the AC and said, “the AC is ON, Mom!” He was right, technically. It WAS on but it was pumping piping HOT air. It had stopped working at some point during the past hour and a half+ wait but I’d had NO IDEA, standing just 10 feet away! My Young Men had not complained. They rarely do! Had not alerted me. Had not opened the windows to breathe. They were waiting [TOO] patiently.  Following the rules I’d set and consistently and STRICTLY enforced: You CANNOT EVER sit in the car without the air conditioner on! (And, keep the windows closed when the AC is on so we don’t let out all the cool air! Ugh!) My Babies could easily have been laying there dying of heat-stroke while I stood nearby! So, what saved us from a fate about 40 devastated parents face each year?

First, and thankfully, my Young Men are BIG & Tall Young Men at 160 lbs each… It takes a little longer to overheat a well-hydrated, adult-sized body (I am a stickler for hydration too). Second, at one point, one of My Guys opened the window to say hello to the pretty band girl, a friend of their sister’s, climbing into the car next to ours (ever the flirts!) and maybe that released a little bit of that crushing heat from the car; And, finally, we really have no idea exactly how far into that hour and a half wait the AC cr*pped out on them. But, OMG TERRIFYING! A tragic glimpse of my life without my Beautiful Young Men  in it flashed before my eyes and I was horrified at the thought of what might have happened to them. HORRIFIED!

Some folks reading this might be judging me, might call this negligence… letting my kids with special needs sit in a hot car, alone. Maybe, they’re right… Or, maybe it was an honest, ignorant mistake. In my defense, as I said, they were not alone… I was just 10 feet away! They are NOT babies… I’m thinking I can’t possibly be the only one who’s ever let their 13-year-old kids wait in the air-conditioned car. And, they are wildly capable Young Men to boot! Furthermore, while waiting for my Old Soul, My Young Men, my Dear Husband (DH, aka “Lou”), and/or I are often sitting in our driveway with the car running and the AC on…. WAITING for the Old Soul! Who would EVER imagine the AC would die? Seriously? What are the chances of that? Well, it turns out a car needs the movement of air rushing through the front grill to cool the AC pump. (At least some of you men are probably thinking… duh!) Parked with the car running and AC on is detrimental to the functioning and longevity of the AC pump. My auto mechanic said a car should not be left parked but running for more than 20 minutes with the air conditioner on. Thank you, Albert (of Felix & Albert Automotive, Oceanside, NY), for that piece of VERY VALUABLE, LIFE SAVING and money-saving information ($1100 repair!). I did not know that then, but I do now… and so do you. And, finally, because we have and will absolutely be caught waiting for the Old Soul on hot days again in our future, we have a newly UPDATED RULE/PROCEDURE: You can NEVER EVER sit in a HOT car! EVER! The AC MUST be pumping COLD AIR or you cannot close the doors of the car! If the AC is not cold yet or stops being cold… Leave the doors open/open the doors, get out of the car, tell Mom. DO NOT EVER SIT IN A HOT CAR!

Turns out, My Young Men were fine… no hotter or sweatier than my Old Soul was marching outside in the 102 degree heat. (One of the band coaches said she looked like she was going to pass out because she was pale and glassy eyed. She replied, “oh no, I always look like that, I have Attention deficit LOL.)  I pumped ALL 3 of them full of water, gave them ALL some ice cream, brought them ALL home to an air-conditioned house, and showed them ALL a news clip about a child dying in a hot car. Then, I explained all the cool things in life they would miss — (spoiler alert) like the sequel to Avengers Infinity War  so they could find out if the people who disappear at the end of Part 1 get to come back — if they didn’t follow the new rule. I emphasized the DANGER and the potential for DEATH!!! Yes, I went for ‘The Meg”-style scare tactic to drive my message and new rule/procedure home. Again, some of you may disagree, but these were MY Young Men I almost lost, and I DO NOT EVER want to experience that again. Drastic situations call for drastic measures… And, scare tactics WORK!

So, there you have it, my bad parenting, who-knew-that-about-ACs?, scary story that I hope, by sharing, might help save someone’s life. Someone young, someone with special needs, someone who is WILDLY and DESPERATELY LOVED and would be SORELY missed if an accident like this almost befell them. God bless you and all your children!

For more information go to:  https://www.kidsandcars.org/how-kids-get-hurt/heat-stroke/


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Do You Have Down Syndrome Too?

Circa 1990, my sister told her young son that there was no such thing as Santa Claus. She’d been perpetuating the “lie” and didn’t want to keep the truth from him any longer. She forewarned his friends’ parents that she was going to break the news to her son and that they might want to steer their young children clear of her enlightened child for awhile. The way I pictured it, she planned her speech, sat him down and, basically, said “[Son], there is no such thing as Santa Claus!” And, it did go down something like that. But, before she could explain, he jumped up, yelled, “You’re wrong about this, Mom!” and ran away. That enlightened little boy recently turned 33… and, I suppose, he no longer believes in Santa Claus (Poor kid!). Sometimes kids just need time to accept things!

My now 16-year-old daughter was diagnosed with Attention Deficit Hyperactivity Disorder – Inattentive Type (ADHD-I) in the fourth grade. She’d been seeing a counselor to help her process the abusive treatment she received several years earlier at the hands of a teacher who just didn’t understand how My Beautiful Old Soul could be so smart yet so inattentive and slow-moving — which IS pretty much the hallmark of her disability. Like my sister, I am committed to sharing the truth with my children (believing in Santa Claus notwithstanding). So, when my daughter’s therapist, medical doctor, teachers, and I finally honed in on her diagnosis, I immediately, and in simple terms, related it to my Daughter. I explained that everybody has something. Her brothers have Down syndrome, I eat too much, and ADHD-I is her thing. Her response was similar to my nephew’s, “But, I don’t want a diagnosis.” That was in 2012! And, she has since come to accept, if not embrace her attention deficit and how it makes her The Unique and Beautiful Old Soul she is. And, she’s pretty happy with who she is. (Most days, anyway… Remember, she is 16!)

So it was with The Boys! In 2005, My Identical Twin Sons were both born with an extra 21st chromosome… a genetic defect known as Trisomy 21, aka. Down syndrome. My family has been speaking openly and honestly about Down syndrome ever since. My Young Men have consistently heard the term used in regular conversation, and have been told that they have Down syndrome, which makes it a little harder for them to learn some things. But, My Boys have never been terribly interested… Until recently!

In honor of World Down Syndrome Day 2018 – 3/21, which represents 3 copies of the 21st chromosome — we facilitated a “Show Us Your Crazy Socks!” awareness activity and sock sale at The Boys’ elementary school and at the Old Soul’s High School respectively. (Note: They share the same neighborhood school and classroom they would have attended had they not been born with a disability… That’s Inclusion! A post for another day!) The World Down Syndrome Day celebration reinforced the message I have always shared with My Children… No matter how crazy, colorful, or mismatched our socks may seem… they’re all still socks! And, no matter whether you have Down syndrome, ADHD-I, or a big butt (like me, LOL), we are all still people… each only slightly different, more colorful, mismatched versions of the human beings we were all created to be.

WDSD'18 Crazy Socks M&B&Sophia

But this year, The Boys did not want to be mismatched socks. They wanted to be just like everyone else. As we talked about the upcoming activities in honor of World Down Syndrome Day, Brian said, “But, I don’t have Down syndrome.” And, Mike said, “I’m not Down, I’m UP!” While I AGREE WHOLE-HEARTEDLY that “Down” syndrome is most certainly a misnomer, I explained to My Boys that Dr. John Langdon Down is the man who first discovered the syndrome, and so it is named after him… And, not at all because the people who have it are “down” in any way.

Holding hands with my Beautiful Young Men as we strolled the rest of the way up the walkway to school the other day, Brian looked up at me and quietly asked, “Mom, do you have Down syndrome too?”

Obviously, he’d been thinking about this on his own as we had not talked about it for several weeks. And, Oh My God, I wanted so badly to be able to tell him that, yes, I also have Down syndrome. I wanted to ease his mind and tell him, “Honey, we are the same, you and I.” I knew that was the answer he wanted to hear. Instead, I told him the truth… No, Babe, I do not have Down syndrome. But, I have this big butt thing that you don’t have… because eating too much is my “thing!” I explained that Down syndrome is his and his brother’s “thing.” And, his sister’s “thing” is ADHD-I. And, everyone has some “thing.” There are others who have Down syndrome, others with ADHD-I, and even others with this big butt thing. He chuckled nervously (because I said “butt”). Then, the faintest protest flickered briefly in his beautiful green eyes, and quietly faded away without a word. He was painfully quiet, which is not his style. Acceptance, maybe, after hearing about but never owning this Down syndrome thing all these years. A painful milestone…

Mothers that have traveled this path before me told me this day would come. The day My Beautiful Boys would realize they had Down syndrome and that they were, in fact, a little bit different from everyone else. I felt unbearably sad for a moment. But, I stood by my explanation — everybody does have some “thing.” Time stood still as I watched him processing the realization that he really does have Down syndrome and is not the same as everyone else. Not even the same as his mother which he’d obviously been counting on these past few weeks before he got up the guts to voice it. I stopped, and hugged him as tightly as I could. Hoping that he would feel as loved as I love him… so beyond words… so deeply in my soul. I reiterated that each of us has our own “thing” that is different and unique about us. That these “things” are what makes us uniquely US… And, it is precisely this unique “thing” that everyone has that actually makes us all the same. He hugged me tight and whispered, “I love you, Mama!” And, the three of us continued to walk on to the school doors. Mike said nothing but, I knew, he’d been watching cautiously and listening intently.

As I do every day, I kissed and hugged them goodbye, and watched them walk together down the hall. I could see that My Beautiful Young Men were a bit weighed down with their new-to-them “thing,” if not with their backpacks. They turned out of sight as they ascended the stairs and, I thought, they’re moving on now, knowing they have Down syndrome. I thanked God they have each other to be the “same” with. And, I thought about all the mothers who have children with disabilities living through this moment, and living with this moment for the rest of their lives. Mama hearts breaking over and over again all around the world. We really are all the same in our unique-ness, our different-ness, our “thing-ness.” Truly, we are all just like everyone else… Wanting to be accepted for who we are, where we are, just as we are.

So many of us have less-than-stellar stories about how the news was broken to us, how we came to welcome Down syndrome into our lives. Knowing it was stressful for us adults, I tried to put myself in My Boys’ shoes, if not their minds, and imagine how I might have wanted such news to be delivered. And, while I personally love a surprise, I felt this sort of “news” deserved a gradual dawning upon. I would love to hear how you handled the telling, and how your kids handled the knowing?

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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