Maggie — 5 Minutes for Special Needs



This year, like the past seven, we’d been telling my live-in-the-moment Boys (identical twins with Down syndrome) for weeks that Santa Claus would soon be paying us a visit and leaving toys under Christmas trees all around the world for good little girls and boys in honor of Jesus’ birthday.


Because Jesus is all grown up and doesn’t want toys anymore but He remembers how great it was to get presents when He was a kid so he decided to share His with all the children who listen to their Mommies and Daddies. I got an “Oh yeah? That’s nice, Mom” look and then they went about their business unfettered by the information.

So, I took them to see “the big man in red who travels by sled” [my description] to ask for the toys they wanted. And I explained that since they are the Best Boys in the whole world, Santa was sure to bring lots of great toys for them on Christmas morning. Still, I got the “whatever” response! No matter how much enthusiasm I infused into my story-telling, all this talk of toys only resulted in The Boys responding, ” Mom. We go to toy store… Please?” Nor would they tolerate any Christmas movies… not “Rudolph the Rednosed Reindeer” complete with Abominable Snowman or even my favorite, “How The Grinch Stole Christmas!” I thought for sure they’d tolerate a villain like the Grinch since he’s like a scrawny, evil Hulk wreaking havoc on the Whos down in Whoville. Not! Heck, they barely even watched “Polar Express” and, I think, only entertained me temporarily because the graphics on the out-of-control train ride are breath-taking, literally. They raised their hands in the air and screamed as though they were on a roller coaster… then they left the room to go play Wii… Bored with the whole Christmas theme developing around them!

Again, on the day before Christmas Eve when I took The Boys with me on my final trek to the toy store to pick up two last minute gifts, I explained Santa’s imminent visit, with all the store clerks nodding in agreement, “Yep, Mom’s right! All true!” No reaction…

Admittedly, even to me, none of the lead up felt quite like Christmas was actually coming this year. Perhaps the craziness of the past two months getting hit and trying to recover from Superstorm Sandy here on Long Island had something to do with it. But suddenly, halfway through Christmas Eve the air felt electrified with anticipation. Preparations were obviously underway — baking and cooking and cleaning for the various celebrations in progress. This unusual activity did not escape The Boys! Something was definitely going on!

As they played in the bath Christmas Eve night I repeated my stories including all the magical aspects of Santa’s visit and using the most fantastical words I could conjure up… and they GOT IT! Finally!

“ME? Santa gives toys to ME? ME???” Incredulous that a stranger would give them gifts for no apparent reason beside the well- known fact that they are such Good Boys! Then they proceeded to say all of the names of the good people they know – “my brother? Lala? Mommy? Daddy? Nick? Carolyn? Kevin? Sara? Me?” – asking whether each would be receiving toys. To each name I answered with an emphatic “YES!”

“TONIGHT? Boom boom boom [read: guns] Under MY Tree?

WOW! Cool!”


Thankfully, the excitement subsided long enough for them to sleep well and long. In fact, only school gets in the way of sleeping in for My Boys. But I couldn’t wait for the moment when I heard them giggling themselves awake upstairs and then their meandering trek to the stairs where, at the top of the staircase, not remembering the whole magical Santa story and excitement from the night before Christmas, they’d see their stockings stuffed to the brim and piles of presents beneath OUR tree. And, at THAT moment when they recalled the stories I’ve been pounding into their good little heads for the past few weeks…. OH THAT MOMENT, when it hits them that Santa really did come through for THEM… it was worth all the trouble, all the money and all the effort in the world to witness the wonder in their smiling, angelic faces and know they GOT IT on Christmas morning…








Sure, it might have taken 300 repetitions… but those few extra explanations are just what they needed to get it! And the wonder was so worth the effort! Take the time to share the story…. as many times as it takes! More from Maggie at



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Antibiotics: How Do YOU Roll?

My Sick Little Man

Need a little help here, PLEASE: My Big Little Man (who is smaller by 5 lbs now than My Little Man) got that back-to-school cold going around. For us, that means an imminent sinus infection as his compressed sinus cavities — a trait common to those with Down syndrome — makes him prone to this particular affliction. In addition, he’s inherited my lousy sinuses, which I got from my mom, so he’s got a double whammy! This is his thing!

So there I was at my VERY trusted Doc on Tuesday for a preemptive visit. My Big Little Man was already congested to the point of no in- or out-going passage in either nostril — read: no drip, no air… just STUCK.

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TRY To Do Some Good Little Thing Just For Yourself

I was saddened to read that Kimberly and her stories about “the child” will be leaving 5MFSN. I totally understand that her To Do list has gotten longer, and more critical, while the time to actually get all those tasks done has gotten shorter. I’ve been there — haven’t we all? Truth is, I’m not so sure I’m not still there.

Yes, I’m also struggling lately with all there is to do. I’m not by any means admonishing Kimberly about dropping blogging. Not at all. In fact, I’ve basically done the same (without outwardly admitting it) for the past 18 months.

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Leaps and Bounds in Baby Steps

The Boys are swimming underwater like frogmen. Doing underwater headstands, flips and dive-toy retrieval as well as sporting an admirable breast stroke… though they clearly prefer being UNDER the water versus on its surface. (They get that from Mom and Dad being SCUBA divers, I guess.)  The Boys are competent dead-man floaters (face down in the water, breath-holding). But that won’t help them pass the Red Cross Level 2 swim test OR, more importantly, stay afloat if they suddenly find themselves in water over their heads. They’re confident but careful in the pool; Big Little Fishes improving daily. Two days ago, their “typically-developing” friend Nick showed them how HE can float on his back in our pool.

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Give ‘Em More Credit… BELIEVE!

You and I know, but does everyone else know? Our kids are smarter than we think. So much smarter than even we give them credit for. WAY smarter than what it says on their report card. And, smarter than any test can possibly measure. I know this… I KNOW IT! And, you know it too!

Graduating Kindergarten: The Big Little Man with the Principal, his gen-ed teacher, the classroom aide and his 2:1 aide.

I just wish everyone else — especially their teachers and the CSE administrators and the critical strangers that we sporadically run into who judge them so harshly — knew it in the same way.

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Natural Inclusion

I am an inclusionist! It seems to me this has always been so. Long before I had children with special needs, the notion of inclusion was an integral part of my life and who I am… The way, I think, it should be for everyone!

I’m sure I’m a better person for it and research shows inclusion benefits everyone — the children with and without special needs.

You see, I grew up naturally exposed to people with disabilities though none were in my immediate family. Not a single one of these people were ever singled out as any different from the rest of us.

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The Slippery Slope of Sickness

Happy Little Buggers Despite Pneumonia, 2010 

This scenario has played out several times over the past two years… ever since that fateful camping trip that culminated with My Beautiful Boys hospitalized with pneumonia for two weeks – one with a partially collapsed lung — while my Old Soul was juggled amongst family and friends developing her own lesser- case of pneumonia. Bad mama that I am, I erroneously thought that camping at the beach and a bit of fresh air might do The Boys’ colds a bit of good. THAT is now the experience we balance all of our vacation decisions against; the thing to avoid at all cost when one of our kids catches a cold that threatens to endanger any travel plans.

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It’s All About the Choices

I woke this morning at 5:00am to the old dog scratching to be let out. I complied, then laid down on the couch. Sadly, I couldn’t fall back to sleep; my mind awash with all the things I could, or should, be doing.

  • Go to the gym? I’m out of shape and overweight and desperately NEED and WANT to work out.
  • Work? I work at home and have a BIG deadline on Tuesday that I won’t hit if I don’t work (a LOT) over the weekend.
  • Housework? Clothes need washing, curtains need hanging, rugs need vacuuming, floors need mopping.
  • DIY home repairs?
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The Top 10 Best Things About the Holidays (For Me)!

Just coming around the mountain of holiday excitement that’s been building up for months (thanks to commercial advertising), I’d like to share my top 10 list of the best things about the holidays this year, for me. SO, the number 10 best thing about the holidays….

10. My Boys really got it this year! They felt the excitement of Santa Claus Coming to Town and were able to tell the big, red-suited, white-bearded Jolly Old  Soul who visited our local nursery/Christmas Tree “Farm” what toys they hoped he’d bring them on Christmas Day.

9. Santa brought really cool, ability-appropriate, developmental toys to my children, who, by the way, were all on the Nice List this year!

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Every time I write about inclusion, there are as many who reply that it doesn’t/wouldn’t work for their child as there are who share my inclusive vision for My Boys, and another bunch playing around the middle ground by choice or by force.  I, personally, advocate for inclusion as I am an inclusionist (not by Wikipedia’s definition). I want my children included in all aspects of life… automatically. Not as an after-thought. I want my children to be seen first and foremost as children, people, students, human beings.  Not as a diagnosis or a disability. I want them to have the same opportunities and choices as every other child has. 

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