Holidays — 5 Minutes for Special Needs

Holidays



                               

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.

“Why?”

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!”

FINALLY!

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…

PRICELESS!

  

 

 

 

 

 

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 http://walkonthehappyside.wordpress.com.

 



                               

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Attitude Adjustment

Happy November, Friends!

(How did this happen? Wasn’t it just January?)

The past few months have been sort of rough for us. For some reason, it seems like everything we’ve done, or tried to do, went horribly wrong. When things don’t go the way I envision them, I tend to get–shall we say–moody? Maybe not moody, but it makes me upset, because I am such a perfectionist (character flaw) that I want everything to go just the right way!

Boom. It hit me.

That is how it is to be our children. I’m sure that, somewhere in their bodies, they think “I want things to go right…for once!”

We focus so much on how to make the world better for them…and I think we sometimes forget to acknowledge the difficulty and emotions they must conquer daily.

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Interdependence

Nope. Not a typo. I know it is the Fourth of July. Happy Independence Day, everyone, and special thanks to our troops and veterans!

Grandma (my dear Mother-In-Law) is coming to visit us today, which means we’ll soon be having fireworks of our own. Everyone aged four to eighty-four in our house will be claiming “independence.”

I can do it myself! I don’t need your help! I’m in charge!

fireworks over a bright cityscape

fireworks by bayasaa via flickr

I think I’m starting to see that this isn’t really true for any of us, however. Even the most strong-willed and able-bodied among us need a little help now and then.

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Ready for Summer?

idyllic Summer in the tropics

I could be ready if Summer looked like this around here

I’m not.

Friends keep telling me how excited they are for Summer. School’s out – no more drop off, no more pick up, no more lunches to pack, no more homework. I do like all of those things. Really, I do. What I’m not ready for are the long (really long) days with three busy kids who expect me to be chief activities director. I haven’t signed them up for any classes yet. I keep saying I need to get a calendar out and start marking possible road trip dates…so why don’t I just get it over with and do it?

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Love is…

Love is…

 

Love is… a choice.

Love is… knowing that without them, life would be empty and cold.

Love is… sharing tears.

Love is…worth fighting for.

Love is…a knowing glance across a room.

Love is… hurting for someone else.

Love is… a familiar smell.

Love is… something that is so easily tossed aside when times get tough.

Love is… not flowers and candy.

Love is…sickness, health, and everything in between.

Love is…Ramen and cereal for dinner while the baby eats organic baby food.

Love is… watching the eldest give selflessly to the little one (who has turned her world upside-down).

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Holiday Carols Were Not Written for Us

I have to tell you, I am a huge sucker for holiday music. I love hearing it while I shop in the grocery and when I’m in the car. I dream of falling snow flakes and cozy fires. I actually know all the verses of many traditional hymns and get mad when artists don’t sing them!

Then, the other night (after a particularly difficult night with the boy child) I started to think about the words, and realized that no one thought of the Special Needs Family when they wrote Christmas music.

1. Silent Night–Right. Like that’s ever gonna happen!

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Santa Visit

Sepia tone head shot of Santa.

He knows if you've been bad or good...Portrait by Vanessa Pike-Russell via flickr

The child is almost eight and still pretty firmly believes in Santa. She is asking lots of questions, but that is just her mode of conversation, not any sort of investigative process. Having a child with developmental delays sort of skews your sense of what happens when. I’ve written about this before. I have no idea whether she should be figuring this out or not. I know some of her peers have because I was in her class on a day when her teacher read a book with Santa in it, and one of the little boys almost blurted out…until half the class shushed him.

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Mom Hair

I am, not by a long shot, a fashion maven. Most days, I rock the t-shirt and jeans look.Some days, I’m lucky if I get to wash my face (showering is clearly not happening on a daily basis!).

Up until recently, I haven’t cared how I look (seriously, I tried to water down mascara that expired in 2006). I’ve spent 5 years dragging a little boy to and fro, over the river, up hill both ways. I’m tired. I’m worn out. I’m weary. I’ll admit that freely, although it took me a long time to be “ok” with myself for saying such things.

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Giving and Receiving

“This is your Christmas present from me, Mama, I’m going to put it under the tree.”

The child has been busy making presents for people and putting them under our Christmas tree. Every single one of them is going to be a surprise on Christmas morning. I have no idea what little goodies she has wrapped up for us. She is quite determined, it seems, to do it all herself. She has no money to speak of (it runs in the family) so she is either making or finding these things around the house. She scavenges wrapping paper, does her own wrapping and labeling (perhaps a little help with spelling a soon-to-be-visiting cousin’s name) and places her little secrets under the tree.

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Magic Marker Monday — Happy Snowflakes…

MMM

It took me four years to paint like Raphael, but a lifetime to paint like a child.”

~Pablo Picasso

Welcome to Magic Marker Monday! If you haven’t heard about Magic Marker Monday yet, click here and then hurry right back…

 

 

We’ve had yet another week of illness around here. Seems like we keep catching everything that is going around. The youngest is just getting over his second case of the croup this season and I just came home from an urgent care visit today with pneumonia. I’m hoping that this means we’ll all be squared away by the time Christmas rolls around!

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