Estrogen, Growth, and My Children with Down Syndrome

Sept-Nov 2011 (phone) 177

REGRET. To feel disappointed over something that has happened — or has not happened — especially in the sense of a missed opportunity. Say like when I was younger and single and couldn’t get up the nerve to talk to that cute guy when I had the chance. Ahhh, what might have been? Or not… (In truth, I have no regrets in that area LOL).

Self-help books tout acceptance as the most effective way to resolve regret. Something learned and, hopefully, applied the next time around. I’ve learned to accept and let go of most regrets pretty easily. Especially because the next time that sort of opportunity presented itself, I seized the day and ended up with a date that was worse than unremarkable. (My oodles of bad dates before “Lou” are tales for another day or another blog LOL.) But, what of the regrets over a lost opportunity that has NO chance of ever presenting itself again?

In most cases, when this happens, I tell myself it simply was not meant to be. But that’s not so easy when the lost opportunity affects someone I love — especially My Children and, specifically, their well-being and their stature… literally!

I can’t change what happened – or didn’t happen – for us. That’s acceptance, I guess (though I still feel regret as I type that). But, sharing our experience so that someone else can learn and maybe benefit from our missed opportunity may relieve some of the regret I feel.

My Identical Twin Sons were born with an extra copy of the 21st chromosome, a genetic condition known as Down syndrome (DS). They were lean and strong throughout their first ten years of life. They are still wicked strong. But, somewhere 20160426 B&M in Williamsburg VAaround 5th grade, I began to worry about their suddenly chubby faces, development of breasts, and increasing weight. I was concerned because, I thought, I’ve struggled with my weight all my life. What if they were not able to manage a lifelong struggle with weight loss let alone weight maintenance (since I’d mostly failed at doing so myself)? After perusing the internet with no standout solutions beyond the sentiment that we should not put our children on “diets” but rather make changes to their eating habits (am I the only one who doesn’t quite understand the difference there?), I went to my pediatrician for advice and he said, “garbage in, garbage out!” I explained that our diet was, in fact, not “garbage” at all but relatively healthy, he offered no additional recommendations. Then, after watching a Dr. Phil episode on childhood obesity, I emailed Dr. Goglia, a Los Angeles, CA fitness guru and Dr. Phil’s weight loss specialist. (Shockingly, he telephoned me directly and said he would help… unfortunately, shortly thereafter he left the country for a long vacation and we never reconnected.) Finally, I asked friends and acquaintances in the Down syndrome community who had older children with DS but no words of wisdom or success stories were forthcoming. Most often, I was told that people with Down syndrome tend to be short and squat, with characteristically larger bellies and bottoms. “Part of the syndrome,” I was told.

One day, I was having lunch with a lovely young couple and their brand-new little girl who also happens to sport an extra 21st chromosome. We’d planned to meet at a conference on “The Best Practices in Educating Children with Down Syndrome” at LIU – CW Post on Long Island’s north shore. We discussed the need to decide early if they were taking the school inclusion route and they expressed their concerns about her health, her siblings, and all their futures. I was sharing my amazing journey as Brian’s and Mike’s Mom and some of the bumps we’ve encountered along the way when a gentleman joined us at the table, introducing himself as a psychologist and the resident behaviorist at the Down Syndrome Clinic at Winthrop University Hospital in Mineola!

WAIT! (Did you hear my brakes screeching to a stop?) The WHAT? A Down Syndrome Clinic at Winthrop? Here I was, TEN YEARS into this journey… I’d run a support group for families, caretakers, and educators of people with Down syndrome. I’d read and MET the researchers. I’d pored through everything written on raising a child with Down syndrome, their development and education. But, I’d never EVER heard of the DOWN SYNDROME CLINIC AT WINTHROP UNIVERSITY HOSPITAL (which also happened to be less than ten miles from our home)! We’d even undergone MRIs at Winthrop when Brian and Mike were babies, but no one ever mentioned a Down Syndrome Clinic! Long story short – at least this part – I took the psychologist’s card and promised to call. And I did! Right away!

The clinic schedules children with Down syndrome on specific days of the month. Initially, I was told that patients are required to see three practitioners on each visit; so, we made appointments with the psychologist we met at the conference, a nutritionist, and Dr. Moris Angulo, Head of Endocrinology. Several weeks later, I found myself sitting in psychologist Dr. Bill Bryson-Brockmann’s office with my Big Little Men explaining that we really had no behavioral issues or concerns to address. My Sons were as well behaved and compliant in the meeting with him as they are at home and at school every day. He briefly questioned us further, and quickly released us. Next, we saw the nutritionist, Colleen Farley-Cornell, where I expressed my concerns about My Sons’ weight gain. She suggested a plan of eating, tips for implementing a healthier diet, and a few specific food recommendations, then sent us on our way to meet Dr. Angulo.

He came into the examining room all smiles and introduced himself to Brian and Mike, then to me. He asked and I expressed my concerns about their weight, then explained the nutritionist’s approach. He took one look at My Little Men and said that no diet would address the medical condition My Sons were facing. Looking at them – developing breasts, bellies, and butts – he explained that it was a clear case of hormonal imbalance. He promptly drew a sketch and narrated the problem. Being a visual learner, this was wildly helpful.

DIAGNOSIS. In laymen’s, or Mama’s terms, here’s what Dr. Angulo explained (or how I understood it, anyway). The uptick in the body’s manufacturing of estrogen, like in pubescent females, fosters weight gain often in the development of what most agree are “typically feminine traits”… larger butts and breasts. And, while boys have estrogen too, their bodies do not make as much as girls’ bodies do. However, in people with Down syndrome, sometimes a thyroid/hormone regulation problem occurs, and the cells become inefficient at absorbing a certain type of estrogen that the body makes. When the body does not detect the right amount of this estrogen inside the cell (where it should have been but isn’t because it failed to absorb it), it manufactures more estrogen trying to correct the imbalance. But, because of the faulty estrogen absorption, the cell does not take-up this additional estrogen any better than it did the original estrogen. As the estrogen levels rise and the cells still fail to absorb it, other mechanisms in the body recognize the higher estrogen level outside of the cells and respond with weight gain, often in the breasts, belly, and butt.

In people with Down syndrome these are common features and considered part of the syndrome – or group of characteristics — due to this relatively common thyroid condition that starts with the failure to absorb estrogen into the cell.

More significant than the weight gain is that the increased production of estrogen prematurely closes the growth plates, permanently ending the growth cycle for the individual. In typically developing people, growth plates close in their mid- to late teens depending on gender. We’ve all seen the shocking growth spurts teen-aged boys often experience between the ages of 12 and 16. They go from being little boys to sometimes VERY tall young men, overnight it seems. For My Sons, and for many people with Down syndrome, the over-production of estrogen I’ve described hastens the closing of the growth plates and renders the individual shorter (and heavier) in stature than they might have been if the estrogen levels inside and outside of the cells were normal and the growth plates had remained open – in boys, until they are 17-ish. As it stands, the increased estrogen production closed My Sons’ growth plates approximately 2 years early (that’s with us addressing it!).

201806 B&M 6th Gr Grad 3

At nearly 15 years of age, their bone age — as measured by a recent x-ray of their hands to examine how open or closed the growth plates are – is 17 years. Their growth plates are closed. They will not grow much (hear the hope?) or any taller than they are today. They are 5’3” now. And THAT is on the tall end for males with Down syndrome. (FYI, my husband and I are both 5’8” and it is posited that a child can expect to be approximately the averaged height of their parents.)

Note, this is NOT an aesthetic problem. I don’t need my children to be taller because I want them not to be short. This overproduction of estrogen prematurely ages the bones and God-knows-what-else is impacted! The human body is a well-oiled machine with millions of moving parts. Just like the impact of the extra genetic material introduced by the additional 21st chromosome is far-reaching. So it is with the amount of estrogen in and outside of our cells, the impact is more than just weight gain and lost height. When one part goes awry there’s no telling how that will/can affect the individual. If estrogen can prematurely age bones, might it play a role in the development of Alzheimer’s disease in people with Down syndrome? Or, what about the occurrence (or lack) of cancer in people with Down syndrome. We know so little. In my mind, when we identify a problem, we need to address that problem. My Dad used to say, if you hurt your knee, you shouldn’t limp. You should get your knee checked. While limping may potentially make your knee feel better — or less worse — it can throw off your hips, ankles, and spine which can cause a myriad of other problems. We need to address the dysfunction.

TREATMENT: When we first came to see Dr. Angulo, he recognized the symptoms immediately… of course he saw the Down syndrome, but he was talking about the over-production of estrogen. He explained what I’ve shared above and told me he’d support his claim with detailed bloodwork (and he did). We’d had annual bloodwork for thyroid malfunction (common in people with DS) and to check for childhood Leukemia (children with DS are at a slightly higher risk) but Dr. Angulo explained that “routine” blood work typically does not uncover this issue. At 10-years-of-age, we were already late to the game, he said, as Brian and Mike were already in their growth years and the increased estrogen had already started aging their bones and closing their growth plates prematurely. At that time, looking at their growth plates in hand x-rays, Dr. Angulo felt there was still time to positively impact their height bringing them closer to the height they were meant to be had they not had this estrogen problem while we addressed the hormonal imbalance. He prescribed two pills: a thyroid medication to facilitate the cell absorption of estrogen in their bodies and a growth hormone to give back a little of the height they had lost to the excess estrogen.

At our last visit,  their growth plates now closed, Dr. Angulo said, “I wish you would have found me earlier. I could have made a bigger impact.” As a mother, THAT statement broke my heart! If only…

If only a blood test had uncovered this silent dysfunction before it impacted them.

If only I had doggedly pursued different answers than the ones I got when I inquired about My Sons’ development and weight gain.

If only someone who’d been down this road before me, had discovered and shared this information with me.

Like most mothers, I think, when it comes to My Children’s development and care, I am a pit-bull, DOGGEDLY chasing down solutions to our challenges. I did chase this down… once I saw the symptoms. By then, the impact was already underway and it took too long to get to the root of the problem before I found the answer.

201811 B&M OMS Football (crop)Maybe everyone else who has a child with Down syndrome already knows about this issue. I didn’t! Perhaps I was somehow mysteriously in the dark about it. A blind spot. Regardless, Einstein said we progress by standing on the shoulders of those who went before us. That’s only true if the information we uncover and the knowledge we gain is shared. I believe in paying it forward…

So here I am. While we continue to treat My Sons’ hormonal dysfunction, we can no longer make a difference in their height. That’s OK. It has to be because it is what it is. (Can you still hear the regret?) I can, however, help others to identify and address the issue early so that their children receive the medical attention they need. That’s my hope. And perhaps, by sharing my story, I may rest a little easier knowing our experience served a purpose and helped another child, another mother, avoid the mistakes we’ve made and the regret of not knowing or doing enough. That would be progress. That would be nice.

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DS — Keeping the Faith & The Music Alive

The Vineyard Musicians 2We belong to The Vineyard Church in Rockville Centre which we affectionately call “Rock ‘n Roll Church.” It’s where Brian and Mike made their first Holy Communion several years ago. Sunday services include a 30-minute worship, or music segment, in which the alter serves as a stage and the church is transformed into a Christian rock arena of sorts. Fabulous musicians on keyboards and drums compliment the blending of electric, bass, and acoustic guitars with beautiful voices. When the music finishes, the Pastor takes the stage, pulling together readings, quotes, and teachings from the bible and other Christian writing in support of a theme addressing a modern day challenge we can all relate to. To say we LOVE it is an understatement. The music definitely draws us in. We show up for the music and stay for the message. My Young Men always choose to sit in the first few pews so they have an unobstructed view of the musicians. The giant screen above the “stage” generally has a peaceful nature scene behind streaming lyrics. My Dudes air drum as they sing along boldly–their monotone voices almost harmonizing. [Almost.] It’s a beautiful sight to see and sound to hear.

Then, when the music ends, they close their eyes and bow their heads in prayer, applaud the band as they leave the “stage,” and quickly say, “Mom, we’re going to the bathroom.”

So, that’s not unusual in itself. They tend to check out bathrooms when we’re out and about and pretty much everywhere we go. But, this bathroom run has been an ongoing thing with them.

One Sunday, I’m lingering after services, talking to fellow members, and occasionally scanning the room for Brian and Mike… Keeping tabs as every mother I know would do. I silently note they are sitting in the back of the church with a big group of… Vineyard MUSICIANS! When I walk back to collect my Young Men, the church’s musically inclined collective share bro-hugs, fist bumps, and hug-hugs, calling My Young Men by name and parting with, “We’ll see you next week.”

Of course, I inquire, “So Guys, how do you know ALL of the musicians?” Brian answers matter-of-factly, “Mom, they’re my friends.” Laughing, one of the musicians responds, “Oh, they come and hang out with us in Ray’s office every week after worship.” Turns out, the bathroom run was an excuse. My Dudes are Vineyard Groupies! Every Sunday they have been going “backstage” to hang out with the music-makers.

Music is a BIG part of who they are, and what they love. It’s a full-time, lifelong pastime.

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DS Awareness: “Smart is as Smart Does!”

We’ve all heard or met book smart people who know an awful lot but seem to have no common sense or ability to apply what they know. Then there is street smart, the ability to survive in the concrete jungle but not necessarily thrive in a school setting. And, of course, we all know a smart aleck who uses his smarts in less-than-socially-productive ways. Dictionary.com defines smart as having or showing a quick-witted intelligence. And intelligence is defined as the ability to acquire and apply knowledge and skills. These days, intelligence is often broken down into categories such as academic intelligence, emotional intelligence, social intelligence, etc. And then, society recognizes those STEM brains that seem tuned specifically into science, technology, engineering, math, etc… so smart could be subject-specific as well.

Forrest Gump said, “Stupid is as stupid does.” In a practical sense, I think that sentiment works for smart too…

Smart is as smart does!

Real-Life Identical Twin Genetics LessonFaster than a speeding bullet, more powerful than a locomotive… It’s a bird, it’s a plane… It’s…. not Superman… It’s Michael and his awesome brain!

At 8 months old, he escaped a locked baby gate enclosure that encompassed the living room half of our great room. He watched me unhitch multiple clips, walk out, and re-hitch the clips. Then, he belly crawled over to the gate, fiddled with the clips unsuccessfully, discovered the gate’s overlapping panels, pulled them apart, squeezed his head into the space between the panels, and wiggled his way to freedom… I WATCHED him do it, in awe of his skills. He was observational, methodical, analytical… By definition… SMART! AND INTELLIGENT!

Then, Brian–Mike’s identical twin brother who has the I’ll-play-off-of-his-smarts kind of smart–watched Mike maneuver through the triple-clipped, overlapping panels and immediately followed suit. Once free, together they belly crawled to the open shelves of food (our kitchen was under construction) and began tearing through the boxes in search of goodies before I intervened. OF COURSE I rewarded their ingenuity… then quickly shored up the baby gate enclosure.

14 YEARS LATER… 

Yesterday was a busy day. We spent a chilly morning at the “2019 Walk to End Epilepsy” in Eisenhower Park in support of Mike and Brian’s friend, McKayla. And, after a brief interlude at home, we attended their backyard barbeque to celebrate her successful fundraising efforts. As we jumped out of the car at their house, I discovered that Brian was without a jacket. When I asked him, he assured me he didn’t/wouldn’t need one, he wasn’t cold. Unfortunately, within 10 minutes of arriving he said, matter of factly, “Mom, I’m cold!” So, I gave him the told-you-so, next-time-bring-a-coat-like-I-told-you lecture and borrowed a jacket from my friend.

With about an hour at home before our next commitment–a Marching Band fire pit party in a friend’s backyard–I told The Young Men they had to change from shorts to pants as it was getting colder and this was going to be another outdoor gig. Brian was INSISTENT that he was wearing his shorts. So I made the deal very clear: You wear pants, you come to the party! You wear shorts, you stay home with Dad. When he realized negotiation was futile he grabbed the offending pants and grumped away into the bathroom. Mike who was standing nearby, was watching and listening to see how Brian’s shorts-pitch would play out. When Brian finally gave in and walked away to change, Mike agreeably took his pants and said, “OK, Mom, I’ll change into my pants upstairs.” And, away he went, happily! 

I could still hear Brian fighting his fate in the bathroom–“Mom says I have to wear pants. But I can wear shorts if I want to. I’m an adult. I don’t need pants. No, I’m not cold Mom!” and on he went–when Mike walked back downstairs wearing the pants I gave him…

ROLLED UP TO ABOVE HIS KNEES!!! He stopped, put his hands on his hips and with a “gotcha” grin sing-songed, “Mo-omm, I’m wearing my pants!”

My husband nearly fell off his chair laughing. And, when I finally stopped laughing, I said, “You’re right. You’re wearing pants and that was my rule… so you’re good to go.” Brian, hearing the commotion, came out of the bathroom with his pants worn in the traditional fashion down to his ankles, took one look at Mike and with his mouth agape, he lamented, “What? Mom, NO! Mike CAN’T wear his pants like that!”

Kid Pics Jun-Oct 2012 133So SMART!

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Down Syndrome & The Brotherhood

Brian & Mike @Woodstock

What IS Down syndrome anyway? My Beautiful Young Men have Down syndrome, a genetic abnormality caused by an accidental triplication of the 21st chromosomal pair. Chromosomes, located in the nucleus of each cell in our bodies, are distinct structures made up of DNA and protein. They are the carriers of our genetic material. Abnormalities in chromosome number due to a problem in cell division can result in Downs syndrome, a common genetic disorder that occurs when a person has three copies of chromosome 21. It’s a duplication… actually, a triplication error. It’s as though we ran the 21st chromosome through the copier during fetal development and it accidentally spit out 3 copies instead of the usual two. And, because my sons are identical twins, they are genetically identical. That means, once that mistake was made in the first fetus, the same mistake was pre-programmed to happen in the second.

When I tell people that I have identical twins who happen — meaning it happened by chance — to have Down syndrome, the usual refrain is, “Oh No! They both have Down syndrome?” Yes, they are genetically identical duplicates of each other, so both have Down syndrome. In fact, I am grateful that they both have Down syndrome because they will always have each other. My Young Men pretty much share the same development curve. Like best friends, there’s a familiar path, a sameness, and easy camaraderie; a brotherhood that starts between them and then they extend to others.

Webster defines brotherhood as: 1. the condition or quality of being a brother; the relationship between brothers; 2. The quality of being brotherly; a fellowship toward others; and  3. A  community of people linked by common interest or common bond.

In a practical sense, brotherhood means people acting with warmth and equality toward one another, regardless of differences in nationality, creed, ethnicity, or ability/disability. While that doesn’t always happen in our society, especially these days it seems, Brian and Mike are lucky to be part of an EXTRAORDINARY brotherhood. First, they have each other. Then, they have us, their immediate and extended family, followed by an outwardly emanating circle of friends and peers. And, finally, they have the Down syndrome community as well as our community at large, where we are constantly advocating for inclusion and acceptance as the common bond.

Join our brotherhood!

 

 

 

 

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Down Syndrome is NOT…

0822191547[1]The myths that are propagated about having a child with Down syndrome are just that… myths!

“A life relegated to caretaking:” At 14, My Beautiful Young Men dress, cleanse, and feed themselves. They get up for school, make their beds, get showered and dressed, take their meds/vitamins, feed themselves (and sometimes make enough to feed the rest of us). They pack their backpacks, charge their phones and iPads, and get outside to catch the bus all in less than an hour! They can take the bus home, let themselves in the house, grab a snack, start their homework — well, Mikey anyway — watch tv, shower, brush their teeth, wash their faces, change into pajamas, put their dirty clothes in the laundry, and put themselves to bed… SERIOUSLY!!!!!

They were invited to a sleep-over with 9 other boys. The host mom asked if I was nervous about letting them sleep over. I answered, “not even a little bit!” The next morning, the mom AND the dad called me in awe of Brian and Mike. They said My Guys were the only ones who even brought toothbrushes, and USED them… TWICE! At night and in the morning. They brought and changed into their pajamas (everyone else slept in their clothes), folded and put their dirty clothes in their backpacks to take home. They voluntarily went to bed around 10pm while the others stayed up to play Forte Night — My Dudes can’t be bothered with that particular game. Brian says, “it’s too violent, Mom!” I got a call from the Mom. She was laughing, saying, “OMG Maggie, they just put themselves to bed!”

In the morning, they made the bed, brushed their teeth, washed their faces, got dressed, put their pajamas in their backpacks, and came downstairs. They did need a little help tying their shoes (Thanks Joe, we’re still working on that). They thanked their host for inviting them and for breakfast, then they called me to come get them. On pick-up, I asked if they behaved. The Dad was amazed, laughing he said, “Are you kidding me? They were SO EASY!”

Those parents gave me credit. But the credit belongs entirely to my beautiful Young Men. They ARE so easy! The two of them together are less work than my 18-year-old daughter… And, truly, she’s a pleasure (ask anyone who knows her)!

If this is a life of caretaking, I’ll take it!

 

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Down Syndrome Doesn’t Stop My Young Men From Living Life to the Fullest!

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  • Assistant Middle School Football Coaches
  • NDSS Lobbyists
  • Honor Roll Students
  • Included in general education
  • Wildly Popular
  • Invited to the best parties
  • Friends with all the girls AND the guys
  • The NICEST Guys around
  • Well behaved, NEVER any behavioral problems
  • The ultimate Gentlemen — Polite, Kind, Compassionate — they hold doors open for people, help others. Chivalry is alive and well in our house!
  • Teachers love them! Students love them! People seek them out.
  • Funny, smart, genuine, loving, attentive

From my perspective, there is no down side to Down syndrome!

 

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Down Syndrome Awareness Month 2019!

Brian as WDC Lobbyist 03212019

Brian celebrating his first gig as an NDSS Lobbyist in Washington DC on March 21, 2019.

Never in a million years — or at least 14 1/2 years — could I have imagined what my life would be like today. It is the first of October, the first day of my daughter’s birth month, the 8th anniversary of my blogging birth, and the first day of Down Syndrome Awareness Month. In 2011, I accepted the blogging challenge, to post every day of October in honor of Down syndrome Awareness. Today, I accept that challenge again….. feels good to be back!

Mike as WDC Lobbyist 03212019

Mike celebrating after a successful day of lobbying for NDSS on Capitol Hill, March 21, 2019.

So here’s my first little tidbit of Down syndrome wisdom: Quite simply, I have never known pure love or pure joy the way I know it now thanks to these two beautiful and extraordinary human beings. They are kind, compassionate, empathetic, funny, AND smart people and I am so grateful that God saw it fit to give them to me. They have changed me and a jillion other people they’ve come in contact with these past 14+ years for the better and forever.

I often get to speak to new parents of children with Down syndrome. In my 14 1/2 years of advocating for people with Down syndrome, I’ve run into only one Mom who, after a month or so, was still struggling to accept that her child was born with Down syndrome. She was referred to me for a glimpse of what her future might look like. I am the proud Mama to 14 1/2-year-old identical twin sons who happen to have been born with an extra 21st chromosome. I told this mother the truth… YES, sometimes it’s a little more work to have a child, or two, with Down syndrome… but through this child she would learn and know, firsthand, the meaning of joy! 

Webster’s defines joy as “the emotion evoked by well-being, success, or good fortune or by the prospect of possessing what one desires.”  In my world… Joy IS Brian and Mike!

I told this Mom that her child with Down syndrome would bring love and laughter into her home the likes of which she had never experienced before. She snapped back, “Do you actually believe this cr*p or are you just saying it for my sake?” I offered up that I don’t have to believe or not believe, it’s just the way it IS… I LIVE it every day.

That woman quit her job because she didn’t want to be pitied for having a child with DS. She moved to a new town where she could be anonymous. And, she went about reconstructing the life she felt had been usurped by the birth of this imperfect child. We lost touch. Until… Nearly two years later, I heard from that woman again. She was in awe of the strength and depth of the love she felt for her child with Down syndrome. She had become active in her local community, advocating for her child and people with Down syndrome. She was so proud of all he had accomplished, and amazed that he seemed to have brought her family closer together. Life was good!

Friends, THAT is what I’m talking about. A radical shift in the earth beneath her feet. Beneath my feet. The deepest gratitude for the presence of our children with Down syndrome in our lives. No matter what challenges I face on any given day, when I am in the presence of Brian and Mike, all is well.

If you don’t know or haven’t met someone with Down syndrome, I invite you to spend a day with us. It is an A-M-A-Z-I-N-G and joyous experience!

I will be posting daily — or doing my best to post daily (FYI tonight’s post counts as October 1 even though it’s after midnight, because I haven’t gone to bed yet from yesterday… just saying). This month, I hope to share some extraordinary little detail, fact, or adventure as a family that lives with Down syndrome every day in honor of Down syndrome Awareness month and in honor of the thousands of beautiful people in the world who happen to have that extra 21st chromosome, for their families, and the millions of people they touch and whose days they brighten just by being alive. I promise to try to keep it interesting, if you promise to “get in the car” (my daughter’s senior quote from Transformers) and go for this ride with me… with us!

Mike woke up this morning and, completely unprovoked, said, “September is done, Mom. It’s October. It is Olivia’s birthday month, Spiderman: Far From Home comes out on DVD, and Halloween is on the 31th.” (BTW, he knows it’s the 31st but was teasing, mimicking the tv show Game Shakers.) Yes, it’s another glorious day to be alive, and to have these extraordinary human beings in my life… and this month, I’d like to share Brian and Mike with you. Enjoy!

 

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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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