10 Reasons I LOVE Being a Mom to my Special Kids!

I sometimes think us mothers of children with special needs are more tired than mothers of children without special needs. Maybe that’s true… maybe not. Since I’m fully in the first category, I cannot speak for what life is like in the second category. I have seen a lot of really tired mothers of children without special needs and really vivacious mothers of children with special needs. And, vice-verse. Perhaps it works both ways and has less to do with the special needs than we think!

Speaking from my own experience, I LOVE being a mother to my children — who all happen to have special needs. It is by far the BEST — albeit the hardest — job I’ve ever had… and I’ve had some really great and tough jobs. While I enjoyed my 25 years in the corporate workforce and really did love so many aspects about each of my positions… In comparison, THAT was a cake walk and THIS is a slice of heaven on earth.

So here are just 10 of the reasons why I LOVE being Mama to my three children — Down syndrome, Attention Deficit Disorder and ALL:

1. I know they need me but, more importantly, they love me… and they never hesitate to tell me so multiple times daily! And, they say it with such meaning! That’s a beautiful thing to hear randomly throughout my day, every day!

2. They show their love with an abundance of heartfelt hugs and kisses that are the real thing! With their little hands on either side of my face, they pucker up and plant a meaningful, you-are-the-only-one-in-the-world (right now) kiss on my lips as they stare lovingly into my eyes. THE BEST! (I have a girlfriend who thinks My Boys should give husbands lessons on how to attend to a kiss.)

3. They WANT to hold my hand (most of the time, that is, and sometimes to the point where my Big Little Men may fight over which of my hands they each get to hold). But, let me tell you,  there is nothing… NOTHING like the feeling of my little ones’ hands in mine! From the warm, pudgy little fingers and hands of The Boys to the long and sinuous fingers of my Old Soul, I LOVE IT!

4. They deeply appreciate every little thing I do for them. They thank me for saying “God Bless You” when they sneeze (all three and every time), for taking them potty and telling them it’s OK if they’ve had an accident (and even when I tell them it’s not OK), for holding the front door open for them as they walk out (all 3), for fastening their seat belts, for taking them to and picking them up from school, for changing the channel to iCarly, and for playing “Victorious” in the car. All three say “thank you” when I give them a quick and loving peck on their heads as they scurry past me on their way to their next activity. They thank ME for loving them! Seriously, my day is a chorus of angels saying, “Thanks Mom! Thanks Mom! Thanks Mom!”

5. They listen. All of my children LISTEN intently to the words of wisdom and warning this Mama has to impart, topping it off with, “OK Mommy!” And, although they may not always do as I say, I know they heard me and I know they try because — before or after the fact, they can paraphrase it back to me (I’ve heard other parents complain they don’t get this). And, on the rare occasion when they don’t do the right thing, they know and immediately say a heartfelt “Rorry, Mommy!”

6. They each have a FABULOUS sense of humor… unique in their own way. I love to hear the purposeful-but-harmless teasing, the sarcasm, the pranks they play and the jokes they tell… sometimes directed at me, sometimes each other. Always complex and always hysterical.

7. Can you say agreeable? Even when they’re resisting, with a very little bit of  prompting, I can [almost] always get my kids to heed my call. I LOVE that about them. Even when my little man says “no” he does “yes.” This sure does make life easier for me!

8. They’re GREAT company! They want to spend time with me. Sure they would rather play with their friends sometimes, and occasionally they’d rather have Daddy pick them up in the “red car” over Mommy and her “cool car” (novelty over routine; though the Old Soul picks me every time). But all three always come home to roost with Mommy. They are, thankfully, MINE forever more!

9. The sound of my children’s laughter fills my home, my life and my heart with love! I am absolutely certain that I laugh more than the average mother. You might be saying that says something about me — and you might be partially right — but the constant sound of my children chuckling, giggling, all-out, laugh-til’-I-choke, guttural belly-laughing is ALL ABOUT THEM. They laugh at each other. They laugh at the dogs and cats. They laugh at stuff on TV. They laugh at me. They laugh when they think private, funny thoughts. (The apple doesn’t fall far from the tree.) And they share all that  with me… without holding back. Laughter is the key to happiness and I’ve got it in abundance!

10. This love my children have — and share willingly — for me will never end. I was at a wedding recently where the groom has a brother with Down syndrome. “Daniel” (the brother of the groom) asked his mother (the mother of the groom) to dance. Tears streamed down my face throughout the song as I watched mother and son dance; the tender way he wrapped his arm around her and held her hand up elegantly as they danced. He looked into her eyes with the love I know so well from my own children. Sarge and I were mesmerized and agreed… this love we know will never end! No matter how grown up my children get, they will always show me the love!

I AM THEIR MOTHER and I could not be more blessed!

Not everyone IS a mother,but EVERYONE HAS a mother. Show YOURS some love today!

I love you, Mom. Thank you for all you’ve done and for showing me how to give and receive love!

Clocking Out: Time for Advocacy and Gratitude

This is, hopefully, the last “sorry I’ve been MIA” posts — an apology to myself as much as to you — with yet another promise-to-myself that I’m going to change. I know that the commitment to change is how things eventually GET changed. So, I’m here to make that commitment… to focus on my happiness project which focuses on fostering change in the treatment and education of children with Down syndrome and all people with special needs! Again!

I’ve been blogging for 4 years now. Things changed drastically for me about 20 months ago when I rejoined the world of the working stiffs and got myself a paying gig… complete with deliverables reliant upon upstream contributors and can’t-hit-’em-unless-you-work-through-the-night-and-weekend deadlines!

In the 28 months of blogging preceding my part-time return to the corporate grind, I was a bit surprised to find that, on average, I posted 3 times a week (12 times per month) about those things that keep me happy: acknowledging all I have to be grateful for; recognizing the folks who restore my faith in humankind through their random good deeds; laughing with the angels God gifted me in my three children… who all happen to have special needs; and the advocacy efforts I undertake on behalf of My Beautiful Angels and all children with Down syndrome.

In the 20 months since I started working, I’ve posted, on average, ONLY two times per month… including a few months I was so busy I didn’t post at all. Imagine a year-and-a-half where I could NOT find even 10 minutes to jot down a few words acknowledging the many things I have to be grateful for; to tap out a funny story about My Angels (assuming I was present enough to notice one); or to pen a brief description of my efforts to change the world for the better through advocacy! Worse, imagine I barely even had time to feel gratitude or happiness, or to have fun with my children or advocate on their behalf, let alone write about it. Nearly all of my waking hours and many of what should have been my sleeping hours was usurped, hitting deadlines and, often times, barely putting one foot in front of the other. Exhausted, sick, and with an injured back, my Old Soul asked me in earnest, “Mommy, when are you going to stop working at this job?”

I had optimistically started back to work one month after My Beautiful Boys started their first round of kindergarten, and my Old Soul was starting fourth grade, in the throes of being diagnosed with Attention Deficit Disorder  (no “H”). In 9 months of K1 instruction, The Boys learned only 3 letters. In between pulling all-nighters for work, I struggled to educate their educators on the most effective, research-based techniques for teaching my children with Down syndrome. Obviously, I failed them and, in turn, they failed My Boys.

Meanwhile, the Old Soul was suffering abusive teaching techniques meant to encourage her to move faster and attend better.  I learned of this when her peers told their parents of the abusive treatment, and the parents told me. My Old Soul confirmed the abuse saying she didn’t tell me because she thought it was her own fault for moving too slowly! Oy, the guilt! I was too busy working to ferret out what was going on.

Last summer, I decided to take a hiatus from our unsuccessful liaison with the school. I  purchased the amazing iPad1 for The Boys (paid for with my earnings), downloaded a handful of inexpensive ($0.99 to $5 apiece) educational apps and spent 30 minutes, twice daily (not religiously) working with The Boys on academics and fitting the same lessons into our regular old summer-time shenanigans. In addition, I focused my summer-time advocacy efforts on educating the people ABOVE their educators… with great success. (My Partners in Policymaking certification taught me never to assume that superiors know what’s going on in the trenches! Educate and raise awareness at all levels!) At the start of our second go-around in Kindergarten (K2), and at my urging, our new Assistant Superintendent of Special Education brought in the expert in educating children with Down syndrome — whose research I shared with The Boys’ K1 educators to no avail — to help educate the educators. Fast forward, nearly through K2, and The Boys are reading more than 40 sight words and learning new words daily. (These are NOT your typical kindergarten sight words like “a” and “the” as those have no concrete-visual meaning, but nouns and verbs with concrete associations and real, content-based meaning to make The Boys immediately successful and foster their reading comprehension as well).

And, on behalf of my Old Soul, I also managed — post-abuse — to get a 504 approved. As a result of the 504 modifications and accommodations put in place, she is actually “not minding school so much” in the fifth grade.

Now, imagine where we might be if I’d actually been paying attention and had the time to work regularly with and on behalf of my children! My daughter might not have had that horrible bullying experience and My Boys might be reading at the school down the block, in the first grade instead of repeating kindergarten.

While looking back at shoulda’s and coulda’s doesn’t help and rarely fills my happiness fountain, hindsight certainly does teach a powerful lesson when heeded.

Now, some of you may be thinking I shouldn’t blame myself for last year’s failures. But, I do — at least partially — because I was preoccupied with work when I should have been attending to my children, to what the school wasn’t doing for them and what I wasn’t doing with or for them… Not enough homework or advocating on their behalf. Others of you are nodding your heads in frustrated surrender… Sadly, too many of us know the work-versus-kids struggle and the educate-the-educators struggle all too well.  Right now, I’m picturing a bevy of mothers propped in front of their laptops/iPads/smart phones collectively nodding in acknowledgement of life as we Moms of kids with special needs know it. All those minimalist and zen bloggers be damned… Many of us are inextricably tied to the rat race, contributing what we can to help keep the roof over our children’s heads while advocating diligently to foster the progressive changes that should have been implemented years ago….

Systems — especially school systems, I find — change slowly. It takes a loud and educated mouth backed by sound logic, research-based proof, and extraordinarily persistent advocacy to take even the smallest baby steps toward changing the status quo. Like the laws of physics, the powers that be will stay their course until an alternative force –  a mother  who is power parenting every waking moment that she’s not working — advocates for the change that should have been implemented years ago… if everyone was doing the right thing, following the letter of the law (see what ADA and IDEA actually recommend), and adhering to research-based best practices.  If there’s any grease to be squeezed into the tight budgets everyone is suffering these days, the squeaky wheel still gets it.

The whole process is antiquated and unacceptable! But, sadly, it is what it is!

Historically, change in the societal treatment and education of people with special needs has come about as a function of the advocacy efforts of the parents and loved ones of children with special needs, and through self advocates.  This is the path to positive change… and I’m on it!

Does anyone remember the movie Network with the mantra: “I’m mad as hell and I not gonna take it anymore!”

Well, I do. I am. And, I’m not gonna take it anymore either!

There’s another working stiff out there willing and able to fill my overworked and underpaid shoes. And, if they’re lucky, they won’t have the conflicting priorities that I do. After my 20-month experiment in “doing it all” I’ve decided that the happiness, education, independence, acceptance and overall well-being of My Beautiful Children MUST come first… which means the advocacy to ensure all these things MUST come second… Before my job (and before blogging)! Since this is a mindset that is not always valued by employers….

I quit!

Coming Clean on Potty Training – The Last Bastion of Control Revisited

So, I still stand by my potty training post a couple of years ago. However, I’d like to revisit our potty-training efforts in hindsight, and share the progress we’ve made since then. Yep, I’m coming clean! Something my boys have nearly totally but sorta not quite achieved in the toileting area.

I can say with confidence that My Boys are fully potty trained… at school. All day long they are able to hold it. They will occasionally tell someone when they need to go. But more often, their aide or the teacher suggests it is bathroom time and they go… just like all of the other children in their general-education class. However it’s initiated, they get to the bathroom in time from 8:30am to 3:35pm with virtually no accidents. (OK, rare accidents.)  At 6 years of age, they’re flying solo at school. VERY cool! But, the minute they’re out of school, sometimes before we even get in the car, we are flying by the seat of our sometimes wet pants.

Maybe  because they work so hard all day long to stay dry. Perhaps because they have 20 typical children to follow as role models. Could be they’re using toileting as an escape from schoolwork. Or, it might be that they’re just too darn engrossed with life outside of school — the activities they do at home — that they simply choose not to attend to their pottying needs… it’s just a lower priority.

The Boys may be fully potty trained at school, but, apparently, they find the interruption quite bothersome at home!

Here, in our humble abode, if they’re wearing anything besides nothing below the waist – bottom naked with a long shirt for cover-up – then pottying is hit or miss (pun intended). Sometimes they successfully hit the pot on time, sometimes not. On clothed days we’re operating at a 90 percent success rate if I’m at the top of my game. That is, 90 percent of the time, interrupting their play at 45-minute intervals (30, they’ve got nothing and 60 could result in accidents in between) to escort them to the bathroom keeps them dry until bedtime. The other 10 percent of the time, without prompts, they’ll sit in front of the television, Wii remote in hand and pee in their pants — rarely a full-out void, mostly a leak interrupted by a mad rush to the pot. Not surprisingly, the couches, pillows, chairs,  and rugs are all in danger when the pot competes with Wii and I’m too busy working (from home) to intervene! To my DIScredit, I would occasionally put them in a pull-up to pre-empt a mess in case I blew an interval while distracted with a work deadline. That cheat’s not working anymore because at 70 lbs, the pull-ups  fit more like bikini boy shorts than diaps. That safety net has been pulled out from under my tightrope. (Probably a good thing… can’t be lazy about it anymore unless I want to buy new furniture.)

When I’m diligent, what they’re wearing on their bottom has no bearing (baring?) on whether they use the pot. That is, if they’re wearing anything on their bottom — diapers, whitey-tighties, their favorite super-hero briefs, boxers, pajama pants, sweatpants, jeans, no matter — they need prompting to stay dry outside of school. To their credit, more and more often, in between my bouts of diligence, I am pleasantly surprised (or shocked) by their independent pottying.

[Note: We still use ultra-thin maxi pads in their undies to catch little "oops" (and something that rhymes with that), so the boys can get to the pot to meet with success, avoid the clothing change, and save the sneakers. I also stow a hand-held urinal in a back-pack in the car along with wipes, undies, maxi pads, and two overnight diaps in case of emergency.

For us right now, absolute independence comes from being unclothed from the waist down (the NY Times methodology I read about and integrated into my efforts years ago). The bottom naked technique consistently results in accident-free, completely independent toileting success. THIS tells me that My Boys DO know when they have to go and they CAN get themselves to the pot on time. It also proves they've learned that they don't have to bother when there's something there to catch the mess. The bottom naked technique has also proven that they can HOLD IT, often for hours, until a break in the action, after Wii Lego Batman defeats the Joker and saves the damsel in distress.

Furthermore, when I absolutely, positively insist and give them the 5-count-or-else ultimatum (I find the 1-2-3 magic count didn't give them enough processing time to make the right decision), they not only go to the bathroom, but they tell me, “Stay Mommy. I do it!” and they go through the entire process all by themselves, COMPLETELY INDEPENDENT from start to finish… except for that ultimatum. I rarely have to vocalize the or else part anymore because they know from the past that it means "Mommy will take you by the hand and bring you forcibly to the pot." Yes, I've done the grab-and-drag once or twice at home. No children got hurt, bruised or battered in the process -- but they did get toileted. I know they remember because they sometimes test but always move by the time I get to 5 and, once in the bathroom, they toilet independently.

And, finally, there are these miraculous and gradually more frequent times when fully dressed, in the middle of their play, one of those little angels God gifted me will get up, go to the bathroom by himself and then come get me, pants twisted awkwardly about his waist to say, “I DID IT!!!!!” And I find they have indeed, without anyone – beside their own bodies -- telling them it’s time to go! THAT is the ultimate success and sure does make this Mama proud!

In fact, I think My Boys are being smart little buggers about this whole toileting thing! They know they can’t get away with it at school so they don’t bother trying. Someone there is paid to make sure of that. And they happily oblige!  They also know that once we’re home from school, I’m racing in a zillion different directions and even my trusty GymBoss programmed for indefinite 45-minute intervals, doesn’t  always keep me on track so I can keep them on track. Their distractions and mine often result in one of them skipping a guided turn at the pot and that may or may not result in an accident. More and more often, it does not!

Yes, we’re slowly and steadily moving toward a 100 percent solution, 100 percent of the time. It’s not been a fast-paced training process by any means. I’ve been doggedly at this since the end of their 4-year-old preschool year and, remember, we’re rapidly closing in on seven. Mind you, my previous potty-training experience was with my Old Soul (no DS), who, at 3-years of age, trained fully in one weekend.

So, after two-plus years of diligent and semi-diligent potty training effort (that is, brief phases of I’m plum tired, busy working, and doing the best I can right now), I’ve come to the conclusion that there’s no golden key to the throne! No one method will necessarily work for every child, or for any child, with Down syndrome. What I've learned is that the most important aspect of potty training, whatever method(s) you choose, is probably Mommy's dogged perseverance.  And when I say dogged I mean the never-ending, can’t give it a rest kind of D-O-G-G-E-D! The less dogged, the more perseverance is required!

The truth I’ve discovered [for us] is this: as with so many other potential developmental delays related to Trisomy 21, a child with Down syndrome will do it when he’s ready and on his own time schedule. I know people who started potty training their children with Down syndrome at barely two-years-old and others who didn’t start until five.  The former because they wanted to hit it head on, the latter because their children weren’t showing signs of readiness. Some in both groups are still struggling, years into their effort. Others in both groups have proudly added that milestone to their long list of tasks accomplished. Greater, equal or lesser potty training efforts aside, my personal experience and observations has taught me that starting earlier doesn’t guarantee training earlier. In fact, sometimes it seems that the earlier you start, the longer you’ll be working at it. That doesn’t mean your child might not “get it” at an earlier age because you started earlier. It also doesn’t mean that  they will, necessarily.

Cryptic? You bet!

I’m not suggesting that you shouldn’t start early. (Heck, in hindsight, the European practice of holding a newborn infant over the loo seems logical to me (after-the-fact) because it eliminates the challenge of unteaching the bad habit of going in your diaper versus into a toilet in the first place… adhering to the errorless learning method recommended for children with Down syndrome. Then again, I’m fairly certain I wouldn’t have survived that method with twins.) What I do believe, strongly, is that every parent should start when they’re ready — because potty training is a long and arduous process that takes extraordinary parental commitment — and should do so only when they believe their child is ready (not because they’re a certain age). Because if the kid’s not ready, I believe that nothing will work until they are. What I’m suggesting is that, no matter when you start the process, your child will get it when she gets it. When he is ready to be trained. When she understands her body’s messages and is ready to heed them. THAT’S when it will happen, with a little push from Mom and Dad.

From all the folks I’ve talked to and all the blog posts, forum discussions and books I’ve read on this subject, MY unscientific observation indicates that the most common age for a boy with DS to hit his potty-stride is seven. (I hear girls with and without DS “get it” earlier than boys, generally speaking.) This is cool [for me] because my boys turn seven this month! Yeah baby, after 2×7 years of diapering and potty-training, I am primed to check off this milestone as accomplished! However, I acknowledge that it’s possible I’m seeing/hearing “seven” because we are precariously balanced on the edge of seven and I want it SOOOO BAD I can… ah, smell it LOL. Like seeing green on St. Paddy’s Day, seven is my magic number (this year). And if it doesn’t happen at seven, I’ll probably start seeing eight everywhere I go.

So, in the end, I think it’s not, and has never been, about what I’m doing right or wrong? In fact, it’s less about me and what I do/don’t do than it is all about them. THIS is what my two Beautiful Little potty-trained Men have taught me. Relax, Mama, it’ll happen when it happens…. on their time.

Yes, I can hear the collective chant of the mothers of children with Down syndrome who’ve gone before me, “THEY’LL DO IT IN THEIR OWN TIME!” And, I find this (if not annoying at times), once again and in hindsight, to be more true than not . I sometimes wish a little foresight would kick in… but in this case, I might’ve given up before even trying if I’d known ahead of time that I’d be potty-training for 2-plus years…x2 kids. Also note, when I say “their own time” that’s completely dependent on each child.  It might be typical and it might not be… but, it’s completely driven by them – consciously, subconsciously or unconsciously –NOT by me!

I do wonder whether any of the steps I’ve taken has readied them sooner (or delayed them further). I even occasionally wonder whether my Little Devils would have ultimately potty trained themselves given the appearance of control and choice they seem to have over whether and when they choose to use the pot. But if history – and the experience of every mother of a child with Down syndrome who came before me – is  any indication, I believe that My Beautiful Little Men are on the cusp of hitting this coveted milestone as a function of their readiness AND, hopefully a little bit, by my nearly constant diligence and dogged perseverance.  It’s just finally OUR time!

Put Your Money Where Your Mouth Is (“The Swallowing”)

It’s 7:50 pm on a school night. The Old Soul has, miraculously, finished her homework and is already in her jammies, and The Boys are in the bath. I am blissfully ahead of schedule… a very rare occurrence. When I finish the “work” of bathing The Boys, I give them their swim goggles, and a penny and a nickel. They are truly 2 chips off this old block–diving for deep-sea treasure… in the tub! This is our bath time ritual every other night.

I am officially “done” with my part of the bathing routine so I call my Mom who I haven’t seen since she babysat for my very successful and well-attended (80 professionals and parents) launch of the first meeting of the Nassau County Down Syndrome Support Group.

As Mom and I reminisce about days past, bathing 2 slippery babies at once (she raised 5 children), I recall the days when the 2 Little Men I was gifted needed lots of extra support even with the awesome, mounted-over-the-tub-wall bath rings. The constant diligence and real fear of babies slipping beneath the water is etched in both of our minds. As we laugh about how far The Boys have come and how I can momentarily leave the bathroom to grab their pajamas because they’re big enough and competent bathtub swimmers, I notice the bathroom has suddenly fallen quiet.

The deafening silence shatters our light-hearted conversation. Children’s silence — especially around water — is NEVER good. And, talking about how great things have gotten is like inviting disaster! A self-whammy. Bad Jou-Jou! I mean… I left them, just a moment ago, with their goggles donned and happily taking turns diving to the depths of the tub for the penny and nickel tossed by the other. A quick check reveals both boys covering their mouths (as in “uh-oh”) and a collective look of panic shrouding their faces. “What happened?” I ask — because they look fine to me. I’m looking for a little something extra — an accident in the bath maybe — but there is nothing! Pointing at Brian’s neck, both boys chime in together, “Brian/I ate money!”

Talking a mile a minute, they recount the tale: They were diving for treasure. Once recovered, they dropped their booty into a cup. And, my Big Little Man “drank money!!!!” I check the tub, the cups, the boats, the bathroom floor. Yes, the nickel is gone. Only the penny remains.

My Big Little Man is licking his lips and swallowing, and swallowing, and swallowing, and swallowing.  “Money here, Mommy” as he points to his neck just below his chin. CR*P, it’s stuck in his throat! My Mom, still on the phone, is shouting, “What? What? Maggie, what did he eat?” I tell her.  Deep down, we both know I’m about to spend the rest of the evening in the Emergency Room…. DARNIT! I was finally ahead of the bedtime curve for the first time in months. As always, Mom is offering support, “I can be there in 15 minutes!” I explain that I can call Daddy home. His departure from work is imminent anyway… I just have to tell him to skip his usual overtime tonight.  “Call him and call me back,” she says.

I drag my Big Little Man out of the tub and stick my fingers down his throat…. DEEP… Tickling his tonsils (if he had any left)…  But nothing — and I mean NOTHING — comes up. That’s odd in itself, don’t you agree?  I’m thinking the nickel must be blocking the way. I give him juice and he drinks, swallows, and swallows, and swallows. The nickel is still stuck, right up there at the top of his throat. “Here Mommy” (pointing).

I call Sarge to come home right away as a trip to the ER is in my very near future.  And I call Grandma back to let her know Daddy’s coming home. But Poppies tells me Grandma is already on her way. Finally, I call our beloved Pediatrician’s service (a number I know by heart LOL). Within a few minutes, the phone rings. After warning me NEVER to induce vomiting because the force could lodge the obstruction in the airway OR the object could be inhaled into the lungs in the process of coughing it up, he says what I knew was coming… definitive directions, “You KNOW you HAVE to go to the ER for an x-ray to find out where it is.” I do know. He continues, “With his narrower airway due to Down syndrome, you CAN’T take a chance. If he coughs it into the lung, we’re talking surgery.”  I admit, “I knew you were going to say that” and we share a remorseful chuckle… You see, it’s not the first time he’s recommended a late night trip to the ER for us.

Out of the bath, towel-dried, hair combed, Angry Bird PJs on… times two.

My Big Little Man is breathing, but he’s swallowing, swallowing, swallowing. It’s still up high in his throat.

8:15 pm: Enter Grandma. Kisses all around and one little coat donned. He’s whining as I rush him to the car, “No Mommy. I tired. Go home now,” (he means “stay home”). Sorry Charlie, we are on our way.

8:20 pm: We quickly arrive at the hospital and, because it’s a child with a potential airway blockage, we jump the intake queue, skip triage and admissions, and are escorted straight through to an exam room. Seems like there are children asleep in gurnies all over the place, with worried and pacing parents hovering about. Then there’s me and My Big Little Man who is happily greeting and fist-bumping everyone we pass.  We both know it’s not the end of the world. It’s not the first nickel ever digested. Still, the possibility exists — and is slightly greater for us because of the narrower airway — for some really undesirable outcomes.

8:50 pm: Admin comes in and quickly completes the paperwork necessary to get the Big Little Man officially admitted into the ER. Two student docs follow to get medical history and a better grasp of the situation. With my Big Little Man sitting there, looking like a perfect and freshly bathed little angel, I explain and educate regarding the narrower airway and, therefore, slightly higher potential for complication. Intake is officially completed, the “Pulse-Ox” is attached and we’re now officially in the emergency queue.

9:00 pm: I’m happy that he’s breathing comfortably and swallowing a bit less frequently. I’m also amazed that he’s rocking his blood oxygen levels at 99 percent. (If you don’t have one, get a baseline blood O2 level, it’s good information if you ever get pneumonia. In 2010, the doctors at Cohen’s were erroneously certain that My Little Men’s pre-pneumonia O2 levels were likely no better than 80 percent given their Down syndrome. So they made that their release target. Could have been a BIG mistake but the Pedi spoke up and sent us home with 02, thankfully! DS, in and of itself, has NO BEARING on O2 levels (unless you’re talking about night-time levels and sleep apnea which is a bit more common in children with DS). Tonight I proved what I — and the Pedi — already knew: his baseline is “normal” at 99 percent!!!

9:35 pm: Enter the nurse who questions my Big Little Man about swallowing the nickel. He vehemently denies any such thing has happened because he figures, if swallowing the nickel got him in here, NOT swallowing the nickel could get him out.  SMART BOY!  She asks me whether I’m sure he swallowed the nickel… because he’s claiming he did NOT! Did I actually SEE him do it? How do I KNOW for sure?  I explain that I gave them a penny and a nickel and the nickel was gone. I explain how both boys gave a highly detailed account of how “The Swallowing” occurred. She doubts me but I insist, “there’s DEFINITELY a nickel in this boy!” Still questioning his ability to accurately communicate, and ticking me off at the insinuation, I convince the Big Little Man to recount his tale directly. Finally, he does so in great–if not poorly articulated–detail, culminating with, “I ate money…. in here (pointing to his neck).” She’s now a believer!

10:00 pm: Just as the excessive swallowing has begun to subside — after all, it’s been an hour and a half since “The Swallowing” — one of the med students comes back with an adult-sized hospital gown. He has to be changed into official hospital garb.  Wrapped like a toga-clad Roman, the x-ray technician escorts us through the halls of the ER. Again, my Big Little Man is fist-bumping with one hand and holding his toga in place with the other. He’s winning the hearts of everyone.

The machinery in an x-ray room is intimidating to the most seasoned, accident-prone person, so my Little Man is slightly taken aback. The nurse explains what’s going to happen, what he’s expected to do and that Mommy is going to be standing across the room.  As she begins to wrap the miniature lead apron around his waist, I explain to him that it is meant to cover up and protect his “pee pee.” When the nurse continues, he wags his pointer finger at her and says, “No! Private!” Ooooh he makes a Mom proud! He’s a perfect x-ray model and stands still while a frontal and side shot are taken. The nurse explains to me that it usually takes several tries before they “find” the object in question.  The first x-ray goes up on the light board and everyone hoots and hollers, “Yup! There it is!”  And, there, at the entryway to his stomach is a bright and shiny (in the x-ray, anyway) nickel!  It has successfully passed the airway!  Pointing, they show my Big Little Man and tell him he should never EVER eat money again.  “No eat money ‘more!” he paraphrases.

“So what now?” I ask.

“Call your pediatrician tomorrow and ask him for next steps.” is the reply.

Yes, we’re outa here! I ask at the desk if we can leave now but they tell me I have to wait for an official discharge from the treating ER Physician. Ugh!

10:30 pm: The ER Doc walks in and recognizes my Little Man from one of our past visits (I suspect the “identical twin with DS” on his chart might have given him a heads up). I remember him too! He’s the one who, just over a year ago, looked at our son in the ER bed and said with a whisper, “so how long has he had… autism? (FYI – My son doesn’t have autism, he has Down syndrome!) Ugh!  He verbally releases us saying we should “see the money” in 24-t0-48 hours. If that doesn’t happen, and/or my Little Man shows signs of pain or rectal bleeding we should follow-up immediately with our Pediatrician. Ugh, again! I ask him, hopefully, “Can we go home now?”  Nope, not until the discharge papers are signed.

10:45 pm: We are really and truly outa here…. Finally! All told, not an awful turn-around time for a trip to the ER.

Epilogue: We did not see that nickel 24 hours later. And not 48 hours or even 72 hours later either.  With his Down syndrome, I expected things to move a little more slowly for my Big Little Man.  We had two BMs early on but no nickel… And then, nothing!  By day four I was beginning to think he might be stuck and vowed to call the pediatrician when his office opened on Monday.  He’d called the proverbial “morning after” to check on the outcome and forewarned me that subsequent x-rays to track the nickel might be necessary if it didn’t come soon.  Come on Little Man, show me the money! Just as I was contemplating the inevitable, acknowledging that I might have to make the dreaded call to the Pedi, it finally showed itself. 4 1/2 days later (the result of a slightly slower metabolism)!

Relieved, I cleaned up the nickel (BLACK from the stomach acid) and told the Old Soul I was going to get a copy of the x-ray and frame them both as a lesson NEVER to put your money where your mouth is!  Her response, “that’s just GROSS Mom!” LOL

The Bonus Payoff: As we left the ER and crossed the parking lot holding hands, I saw it! The wooden cable spool I’ve been looking for for the past few months. I want to make a really cool french-stamped nautical end-table that I saw in a DIY magazine article. I searched Craigslist, Freecycle and Ebay, and asked electric and cable guys working in the streets and up on poles where I might find one, to no avail. Now, not 20 feet from the “trunk” of my minivan, there it is, beside a hospital DUMPSTER!  Yes! I strapped my tired Little Man into the minivan and turned on “Night at the Museum 2″ to entertain him while I squished the double stroller into the front street, dropped the third row of seats down and rolled that baby in.

Now to find the time to transform it. And, when I do — likely 6 months from now — I’ll take a pic to show you all (if I remember) what good came out of this episode. You see? Everything really does happen for a reason! ;-P

Funny Thoughts from an Overtired, Overworked Christmas Mom

This holiday season, I am admittedly entirely over-tired, over-worked and over-whelmed. A state of mind that often brings some bizarre, pseudo-[dis]connected, free-flowing thoughts…

They say time flies when you’re having fun. Oh it flies, for sure, especially during the holiday season,! But I don’t know about the fun part. Never mind “where have all the flowers gone?” Where have all the days gone? We’re exactly SEVEN days away from Christmas and I’m flashing back to a moment in early November when I thought, “Gee, I’m really in the Christmas spirit this year. I’m going to enjoy the heck out of the next two months. Get my tree and outside lights up early, and invite the friends and neighbors for hot chocolate and cookies.” Reality check: Nearly two months have come and gone and I’ve barely enjoyed a Christmas moment. When is this kind of craziness going to stop? Not a single light hung and no tree yet. I’ve got a LOT to do this week!

The Boys and Old Soul are now pressuring me for the tree we haven’t found yet  despite three unsuccessful shopping expeditions. We’ve come home empty handed because we like the old-fashioned ”Tannenbaum” tree that nobody seems to sell anymore. As if the sparse  branches of the traditional Christmas tree was a function of not having enough Christmas cash to afford the full-bodied, Frazier-Firs that force you drape your ornaments on the outside versus spacing them from trunk to tip the way they did in the olden days. Yes, we have enough money for the big, fat Christmas tree but we want an old-fashioned spindly tree to go with our nearly 200-year-old house. As the search continues, my children’s angst is on the rise.  ”Mommy, TREE! Santa put toys UNDER [the] tree!!!!! We need [a] TREE, Mommy!” For all the worry about the tree, thank God they haven’t keyed in to the whole chimney thing… Six years post-construction and we’re still working on getting a fireplace installed! Santa will have to use the door. Hopefully, the new (and third) dog will grant him passage.

Yes, this is the year of The Boys. At six, they are finally all jazzed up, the way you love a kid to be, about Christmas and Santa. It’s like their very first Christmas. VERY cool. This is the kind of fun that makes time fly. Oddly though, no matter how hard I try, they are absolutely, positively NOT interested in watching Rudolph the Red-nosed Reindeer, The [original] Grinch and Frosty the Snowman, my favorites. I have seven days to push my holiday agenda but if it doesn’t work, I’m going to stay up late[r] one night to watch them myself. Maybe with the  hot chocolate and cookies I didn’t share with my neighbors. Anyway, I plan on enjoying their building excitement over these next few days to fulfill my early November dreams of enjoying the Christmas season.

Speaking of being fulfilled (if the excitement, hot chocolate and cookies don’t do it), I heard one of those annoying, shut-up-and-stop-yelling-at-me, advertisements on the car radio the other day on my way to the mall, desperate to pick up a choice gift that I could ONLY get THERE (otherwise, you wouldn’t catch me dead in a shopping mall). The radio guy said, “Having trouble losing those last 10 pounds?…” NOOOOOOO, for God’s sake!!!! I’m not having trouble losing the LAST 10 pounds. THAT insinuates I’ve lost everything else but those last 10.  It’s the FIRST 10 POUNDS I’m struggling with! What a marketing coup it would be if someone came out with a successful weight loss program to help those of us who are more than 10 pounds away from our ideal weight… Those of us who are NOT yet on the losing path and who have NOT glimpsed the “almost-there plateau” in years. How about some help getting US on our way to losing those FIRST 10 pounds!

On that same shopping adventure, I discovered something REALLY important that might come in handy over the next week as we navigate the shopping frenzy of the week before Christmas. The BEST time to go to the mall is at 2:50 pm when all the shoppers turn into pumpkins – oops, wrong holiday – I mean parents as they rush out to pick up their kids from school. Pulling in at 2:06, there was not a spot to be had ANYWHERE in the lot. I circled the rows of cars near the mall entrance where I knew the kiosk I had to visit was (so I could go in for the kill and make a quick exit) but there were no empty spots. Widening my range with each pass, I followed present-laden shoppers walking (most wandering lost) through the parking lot, looking for their cars. Inevitably, every one suddenly switched direction, cutting through to the next row (something you can’t do in a car) as they spotted their vehicle… The lucky car circling for the 19th time in that row wins the prize, drats! I finally lucked out with a distant spot being vacated by a cabbie who failed to draw the attention of other hopeful parkers because he backed in to his spot, so he packed his trunk with shopping bags inconspicuously and, as luck would have it, conveniently started ‘er up just as I made my approach. I was in and out of the mall with my Christmas cache by 2:50 pm and, behold, the lot was EMPTY! There were tons of spots right up front! If I had known, I might have had Sarge pick up the Old Soul and stayed to do more shopping (hah, as if)! Then again, the long walk did me good considering those first 10 pounds I’m still trying to lose.

Yes, the Christmas season brings warm (because I’m sweating after hoofing it from the far reaches of the parking lot) and fuzzy thoughts (due to extreme fatigue) of gift giving and candy canes and all the other wondrous things that go along with this, my favorite, holiday.

NO CHAIN LETTERS, EMAILS, POSTS OR TEXTS!

I remember my big sister doing chain letters as a teenager. She’d handwrite 5 or 10 copies of a brief letter with a veiled threat at the end to continue it, or else…

Never mind the cost of stamps, what a pre-home-office-copying-machine nightmare that had to be! Thank God that practice died out! Right?

Yes, snail mail chain letters are dead, BUT, as if email chain letters crowding my inbox aren’t bad enough, today I got a text chain letter. I BARELY text! I find it annoying to think and communicate in little clip-its and abbreviations on a telephone screen (that last part is amusing all by itself… that phones have digital screens, isn’t it?) and don’t even get me started on Twitter! But, this text just bugged me. See, I can’t figure out who it’s from but it was tied to special needs! Can you imagine? Somewhere in my quest for information on special needs, I got on someone’s nasty ol’ special needs chain letter text list. Seriously?

As has always been the case with chain letters, a wonderful story or sentiment is forwarded from someone who got my cell phone number from God knows where (in my sister’s day it would be from a friend but now it could be anybody) tied to a promise for good fortune IF I forward it to X number (pick a number, any number) of people OR I’m a loser if I don’t forward it and something bad will befall me… soon! I need this?

Today’s text message:

A 15-year-old girl holds the hand of her 1-year-old son. People call her a “slut.” No one knows she was raped at age 14. People call another guy “fat.” No one knows he has a serious disease causing him to be overweight. People call an old man “ugly.” No one knows he experienced a serious injury to his face while fighting for our country in the war. (Here comes the 1-2, promise-threat punch.) Forward this if you are against bullying and stereotyping. I bet 88 of you won’t, the other 22 aren’t heartless (add insult for good measure) and will. Hi, my name is Amy Bruce. I am 7 years old (don’t know Amy but I’m thinking she didn’t send this) and I have severe lung cancer. I also have a large tumor in my brain, from repeated beatings. Doctors say I will die soon if this isn’t fixed, and my family can’t pay the bills. The Make A Wish Foundation (wonder if they sanction text chain letters?) has agreed to donate 7 cents for every time this message is sent on (Doubtful. Tracking nightmare!). For those of you who send this along, I thank you so much, but for those who don’t send it, what goes around comes around (there’s the threat). Have a heart. Send this to 15 people. Signed, Amazed by you, Forever N Always “Booger Suger”

Here’s the thing: I agree with the sentiment that too many people are passing judgements on others when they don’t know the whole story AND that bullying or being mean is just WRONG! But, the truth is, their stories are theirs, and the acceptability of their life situations is none of my business! Or anyone else’s! Not my place to look at a person and judge them… ever! The 15-year-old may not have been raped. Maybe she just made a conscious decision to have a child at 15.  Or, maybe she just made a mistake. (God knows I’ve made plenty of mistakes myself)! Whatever! She doesn’t need, want or deserve–and shouldn’t care about–my judgement.  And whether the overweight guy ate too much or has a disease is none of my business either. I’ve got my own weight issues to contend with. He’s a person just like me and I’m not here to judge him just as I hope you are not here to judge me. Remember the whole living in glass houses and throwing stones thing? As for the old man, beauty should be in the eye of the beholder but apparently, it’s in the eye of the media. And I, for one, am sick and tired of tv, magazine, internet and billboard ads shoving their version of beauty down my throat. There are a lot of “beautiful”-on-the-outside/ugly-on-the-inside folks I’d rather NOT know and plenty of “ugly”-on-the-outside/beautiful-on-the-inside folks I’d be lucky to call my friends! Pffttthhh (that’s my sad attempt at spelling a raspberry)! Bravo and my undying gratitude to that man who fought for our country. Every scar he carries is a medal of honor. I’m one of those people who believes that scars add character and experience adds wisdom. It’s a story waiting to be told and I’m an eager listener. Send all of these folks over to my house and I’m sure we’ll all be chatting and laughing and enjoying each other’s company in short order.

As for poor little Amy, God knows I pray for all the little children who are sick or abused. I’ve always felt that the children and animals are the innocent victims of the ruthless and somewhat cruel society we have built. (And, I’M an optimist!) I pray for her and all of them, and I donate to the American Cancer Society, Breast Cancer Support Fund and St. Jude’s Children’s Hospital…. but I won’t forward her chain text! I’M not heartless but threats and insults to try and get money from donors in a less than reputable way IS!

Here’s the other thing, I whole-heartedly doubt–see, I have a heart, and it doubts–that the Make A Wish foundation is giving away 7 cents per text-message forwarded.  But, if there was an accessible and legitimate way for them to track and pay that out to little Amy (I worked in the systems end of the cellular industry), then I’m sorry I did not contribute my $0.07. But I DON’T forward chain texts! However, I do believe the message–though clouded with drama and threats–is basically a good one. So I am sharing it via my blog.

THIS IS NOT A CHAIN POST. It’s just my commentary on a good underlying message delivered in an obnoxious medium and method.

For me, the message isn’t  that we might have MISjudged the young girl, that overweight guy or the old man!  It is that we should all stop judging others. God only knows what someone else’s situation is, what’s on their plate, what sadness or difficulties have befallen them in life. Or not! I do not walk in their shoes and so I am in no position to judge. I live in that proverbial glass house, and plenty of windows would get shattered if I cast stones at every Tom, Dick or Harry that didn’t do things the way I think they should be done… especially if Tom, Dick and Harry started throwing stones back my way for all my idiosyncrasies, indiscretions or their misjudgements of me.

For those with a religious/faithful bent, “Let he who is without sin, cast the first stone!”  I’m NOT so I won’t be casting any stones. I live by the motto, “To Each His Own!” Everyone makes their choices and lives their lives. As long as it doesn’t hurt anyone, it’s not any of my business.  Yes, I intervene when I witness bullying.  But otherwise, we are all free to live as we choose.  And, like the old man’s scars, our differences make the world a more interesting place to live!

So, this holiday season, instead of judging, try a little more kindness instead! Pay it forward and see if that doesn’t bring about more peace for us all.

P.S. If anybody knows who “Booger Suger” is… can you forward this to him/her and tell ‘em I have a heart, I paid it forward in my own way… and happy holidays from Maggie.

Taking Care of the CareTaker

We mothers — and, I think, especially those of us who mother children with special needs — have heard the advice:  “Take care of Mama, ’cause if Mama ain’t happy, Ain’t nobody happy!” I’d always interpreted that to mean that if the kids and Daddy don’t do things to help make Mama happy – like not fighting, picking up their toys, buying her diamond stud earrings and taking her out for dinner and dancing once in a while (LOL, as if) — then Mama will be miserable, and she’s going to take everyone down with her.” You know, the whole misery loves company phenomenon.  Recently it was suggested  that the tenet is saying I need to take care of myself, and keep myself “happy” so that I could take better care of my family!

Hmmm… Do more for me so I can do more for them? OK, I’ll add that to my already impossibly long To-Do list right after “Schedule the blood draw and drop off the stool samples at the lab,” “Call a CSE meeting to add another weekly OT session for The Boys,” “Convene the Old Soul’s 504 Committee to add the ‘check agenda daily’ accommodation,” “Find a regular weekly appointment time to see the Old Soul’s therapist,” (because the irregularity is killing me) and “schedule a meeting with the Old Soul’s science teacher and the school psychologist about not implementing the 504 as required by law.”  Maybe I could squeeze this new task in right before “Go to the gym” and “Get to Weight Watchers meeting on Friday at 10am”… Neither of which happens because the kid’s meetings trump my gym and Weight Watchers. No, I’m not always in school meetings or running life-sustaining errands (though it sure seems that way to me). But, when I’m not, I need to WORK so we can pay the bills and buy the food! Yeah, I get the concept that I need to pencil in some time for myself. I do… and it actually happens some of the time (read: rarely, when I actually NEED a break emotionally before I crack)! But, the basic needs of my children which – besides food, shelter and rest – includes educational and medical pursuits, override all those wouldn’t-it-be-nice ME tasks.

My therapist (God bless the special needs mother who doesn’t have a non-judgemental ear to listen to her daily trials, tribulations and triumphs) shared with me that the taking care of myself first is like the advice you get when traveling on an airplane.  In case you’re not familiar with these instructions: you’re traveling on an airplane with your child. If the plane runs into serious enough trouble that the oxygen masks deploy, flight attendants advise adults traveling with children to put the oxygen mask on themselves first and then help their children to do so.  The logic: you can’t help your child if you’re dead. This NEVER made any sense to me.  If we’re in that much trouble that I could die from not having my oxygen mask on before there’s time to get one on my child, then hell if I’m not going to put it on my child first to boost his chance of survival over mine!!! I can hold my breath longer, remain calm in times of sheer chaos and formulate a plan through crises.  Thanks, but if only one of us is going to survive, I’m going to hedge my bets in favor of my child’s survival and put the mask on her first.  Her survival is more important to me, than mine.  When the ship goes down, they didn’t tell the parents to jump in the lifeboats first, and then save their kids.  The MEN–’cause chivalry wasn’t dead in those days–were told to put the Mamas and the children in those lifeboats to ensure their safety.  And, with the Mama’s in charge, their children–their well-being and lives–come first!

At least for me!

Afterall, I brought these totally dependent little creatures into this world, didn’t I? God gave me the awesome responsibility of caring for these amazing miniature human beings until they can care for themselves some 18+ years from now–or more for those who coddle their post-college children. (I can say that now LOL, ’cause I’m sooo far away from that day. I can stand here on my soap box and proclaim, “not me, ba-by.” But, we’ll see how I do when it’s my turn to cut the proverbial apron strings–if I actually ever own an apron, which I don’t, and if I’m lucky enough to help my children achieve that level of independence at some point in their lives). It is my job to raise up these children to be living, responsible and contributing members of our society.

So I sacrifice!

Buying the iPad loaded with special education apps to use daily with The Boys is more important than me going on a summer vacation to Disney World every year, let alone once in our lives.  New sneakers that fit their growing feet are more important than the pair of worn out boots I’ve wanted to replace for myself. Hair cuts to keep their bangs out of their eyes so they can see the chalk board at school trump my should-be-bi-monthly-but-only-happen-bi-annually (if I’m lucky) hair cuts.

YES, I admit it, I put the care and well-being of my children first, before me. Obviously, my basic needs (and then some, as I’m a tad overweight) are met in order to survive so that I’m here to take care of my children.  I’m eating, sleeping, laughing and occasionally even get some new clothes when mine finally wear out… because that’s what I NEED to survive. Key word “need!” In the animal kingdom, many new Mom’s winter with their babes without eating. She and her infants all live off the fat of the Mama until she emerges from the maternal den, svelte, with a brood of healthy, thriving youngun’s. Then, to the extent that any Mama is, she’s “free.” That’s what I’m talking about! (The svelte part would be nice too, but it ain’t happening here.)  As Mamas, it’s our job to nourish–the Old Soul’s vocabulary word this week, meaning to provide with food and other substances necessary for life and growth; to promote and sustain the growth and development of–our children. Nurturing and nourishing my children sometimes overshadows the pursuit of my own happiness, but never ever my survival.

I begrudge no one their hair appointments or trips to the gym. If you’ve got the coverage, time and energy… BY ALL MEANS, go for it!  I would! I try daily. Sometimes I get there — in between all the necessary child-rearing tasks and all the other things I want to do that encroach on all the things folks say I should be doing for myself — more often I don’t. You could say I’m wintering with my youngun’s right now.  Providing for my children and living off my own “fat” — memories of freedoms past and yet to come — until I’ve grown them up to be independent enough to give me a moment to work-out, watch a non PG-rated movie with my husband or shop leisurely for a new pair of boots. It’s just not in my cards right now.  And those who say I need to fit those things into my life before I collapse… are, well, in my opinion, a tad off… for me.  Because not doing for my children would drive me to mental collapse waayy quicker than not going to the gym. I need to do this mothering thing all the way, as much as — actually, more than — I want to go to the gym.  And, I desperately want to go to the gym.

Mind you, I’m not one of those Mamas who sign my kids up for gymnastics on Monday, scouting on Tuesday, art classes on Wednesday, karate on Thursday, roller skating on Friday and soccer on Saturday.  I’m the let’s-wing-it-and-have-some-fun Mama.  We play. We laugh. We live! Right after we struggle through homework Monday through Thursday. For me, the key is not doing less for, or with, my children but learning to say NO to all those other extraneous tasks that encroach upon what little time I have after I do what I must to grow my children into the as-independent-as-possible little human beings they can be at each stage of their lives and to the best of their abilities.

I know I’m not alone.  I believe whole-heartedly there’s a bunch of Mamas out there who feel the same way I do.  I’ve met quite a few. And while I’m a little tired of doing so much–I know I can’t do less for my kids.   And, I’m just as tired of people telling me I have to do more for myself.

I love my life!  It’s extraordinary, really. I would just like a smidge more time to sit back and enjoy it…. with my kids and my husband. I know that’ll come, right after the needs of my still-dependent-on-me children are met. So, if you’re tempted to ask me to take on the class party preps or become the Girl Scout troop leader — all on the heals of telling me to do more for myself – please know I’d love to help, really, but I’ve gotta learn how to say “NO.” You see, I’m on my way to the gym before the school nurse calls with the next emergency, right after I make a pit stop at the lab.