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November, 2012 | Everyday Childhood

Archives for November 2012

SMA and the American Giving Awards

Nothing does more to advance SMA* research (and critical fundraising to pay for said research) like public awareness, and it’s an awards event next Saturday on NBC which can help our efforts tremendously.  This grant contest will culminate on December 8th on NBC in such a public way to hand out such an insane amount of money (one millllllion dollars).

I’m talking about the American Giving Awards, which air next weekend on NBC–this may as well be the super duper uber grand prize in the Chase Community Giving program.  The monthly Chase Community Giving grants have been an incredibly generous offering to charitable organizations in the U.S., and one of our most compelling, engaging SMA non-profits–the Gwendolyn Strong Foundation–was privileged to win one of these contests a couple of years ago!  But if winning the money was the cake, raising public awareness of SMA was the icing.  More on what I have to say about SMA here.

Supporting me, my children and the SMA community right now does not mean donating a dime–just a couple clicks on Facebook.  The Chase Community Giving contest lasts through next week, and a vote for the Gwendolyn Strong Foundation could mean winning such a prize at such a large scale that it would provide iPads to 2,000 people affected by SMA. GSF’s one-of-a-kind Project Mariposa iPad grant programs accepts applications from anyone within the SMA community.  Each week they use donor money to purchase an iPad for a randomly chosen grant recipient!  The program was not designed or funded to be a long-term commitment, but with a grant like this it sure could be.

If you have ever witnessed someone with limited strength or communication abilities benefit from the touch screen technology of an iPad, or interact with some of the amazing apps which open a new world for people with limited abilities, you know what a gift of innovation this Apple product is.  If you are unfamiliar with just how life changing something which might be considered just a luxury electronics item can be for my kids, be enlightened here.

Please click here to learn more about GSF.  Click here to learn about their Project Mariposa iPad grant program.  And if you know someone affected by SMA, it’s easy to apply and have a chance at winning one!

Please click here to donate your one vote to GSF.  You get one vote, one time.  That’s it.  Make it count, and help us spread the word about SMA and the incredible efforts that the Strong family put forth via the Gwendolyn Strong Foundation!  As GSF and I like to say, NEVER GIVE UP!  Also?  Please vote!

 (me, nephew Luc, BFF Stacie)

*SMA = Spinal Muscular Atrophy

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

Something For Nothing!

Because I like contests that give you something even if you don’t win…

vintage housewife

I’m sharing with you the Zinio Give a Little, Get Alot Sweepstakes. There is no purchase necessary and upon entry… you’ll get $5 to buy a magazine for you mobile device! How fun is that? In addition… you’ll be entered for a chance to win one of three iPad Minis from Zinio. Yay!

Oh… and the first 8 of our friends to leave me a comment… will get a free magazine subscription of their choice! There were 10… but I kept 2 for myself and Cass. Zinio was kind enough to let me keep a couple in exchange for sharing about this contest.

So. In review…

Enter. Get five bucks. Have a chance to win an iPad mini!

Ends November 30th!

Go!

http://bit.ly/givealittlegetalot

 

Christmas Memories of Yesteryear (or like, four years ago)

It’s Christmas tree decorating time at our house, and for once I’m on the ball–the tree is up and decorated and we haven’t even finished the month of November!

As each holiday season goes by I’ve always been sure I would remember all the details about each of the kids as babies and how they have grown and developed, but let’s face it:  we just have too much other stuff going on in the space between our ears to remember every little thing.

That’s why I love photo ornaments.  The twins got sick and lost a lot of weight one year after Christmas and never quite returned to their previous chubbyness.  I miss those cheeks!

The twins were 18 months old in these.  Awww:

 

From this year:

 

 

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

Wanna be a better parent?

Volunteer in your kid’s classroom.

I’m serious.

Not only can you observe and learn how a professional handles your kiddo’s age group, but you can take those skills home and use them.  USE THEM AGAINST YOUR KID!  Do you guys not realize that the teachers know how to cajole, manipulate and otherwise coerce your child into doing math, hold a puppet show, or retrieve new glue sticks?  AND THEY CAN TEACH YOU THEIR MAGIC!

I mostly volunteer in the twins’ kindergarten classrooms.  I am tasked with working with some of the children who can use extra help with the alphabet, identifying letters and sounds, rhyming and syllables.  But as I work with these cherubs who belong to their own parents (believe me, some are so cheek-pinchingly earnest that I can only wish they were mine), I watch their teacher like a hawk.  How she quiets the excitable crowd, how she transitions them from one activity to another.  How when she calls for clean up she does not tolerate the blocks being thrown near the bucket–“Who played with blocks?  This is not how we put away blocks.  You put them away just as you found them, Joey.”

As you write your thank-yous to your child’s teachers, don’t forget to thank them for their patience.  If you have time–even just one day per month–offer to volunteer in your child’s classroom.  Get in tune with what your kiddo is learning, who they are sitting next to, and do not miss out on learning from the teaching techniques his/her teacher uses and bring those skills home.

You’re a parent.  There’s no certification required to be a parent.  We don’t always know what we’re doing.  But there are a whole lot of certifications to become a teacher.   There’s a chance we can learn from them.  Yes, even the kindergarten teachers.  Especially the kindergarten teachers.

And no, they don’t get paid enough.  (And yes, they have enough “#1 teacher!” Christmas tree ornaments.  Gift card to anywhere, my friends–I’m guessing that’s always preferable to anything that says “teacher”.)

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

“How do you even stand yourself?”

Kyle woke up screaming for me to turn him to his other side at 0’dark-thirty early one morning.  It was completely dark outside, yet he greeted me with the silliest wide-eyed massive-grin face.  I was grumpy about having been woken up, but his silly-face expression lightened my mood.  As I turned him, I told him, “Dude, you are a crack-up.  How do you even stand yourself?”  The silliness left his face as he informed me, “Momma.  I can’t stand.”

Kids can be so literal that it hurts.

But it’s true: he cannot stand.  He has never stood, other than in my dream once.  Neither can his twin sister.  I’ve talked about SMA here a little in the past, and given that our Walk N Roll to Cure SMA is two days away I want to explain Spinal Muscular Atrophy as a disease and from the perspective of a parent of two children who have it.

SMA is a neuromuscular disease.  The “atrophy” in the name indicates the degenerative nature of the condition.  It’s hard to pinpoint when the twins’ strength peaked because in some ways they seem to continue to slowly get stronger, but in hind sight I think it was when they turned two.  After their second birthday they both had growth spurts and their muscle and bone strength couldn’t keep up with their heavier, longer bodies.  Increased strength never caught up with their increased size.

SMA primarily affects voluntary muscles (limbs), but a weak diaphragm means that the twins need a nighttime breathing machine (bi-PAP), prn nebulizer treatments, and twice daily help to clear their airway (Cough Assist).  Their immune systems are as strong as any other five year old but they can’t blow their noses or cough out the crud like most of the rest of us can, so the common cold or a little congestion can put them in the hospital with pneumonia.

Since they cannot walk, the twins drive wheelchairs.  Because their arms are not strong enough to push a typical manual wheelchair, they drive powered wheelchairs using a joystick in their lap.  As times goes on they will lose hand strength, but their joy stick controls can be replaced with smaller versions, and eventually can be completely replaced with a high-tech eye gaze wheelchair navigation system.  Nothing can stop these kids!

But that’s the future.  Right now the twins are among the brightest in their kindergarten classes.  They have dozens of friends and are cheerful young children with varied interests.  They are learning to read and are grasping early math concepts.  They have wonderful aides and therapists in their classrooms who help them with their daily tasks and routines, help them adapt the classroom pencils with larger grips for their weak hands, bring easel-type boards to them to prop up their papers to ease pressure on their elbows and to help them sit up straighter.

The twins cannot uncap a marker or squeeze a glue bottle–these are everyday activities in a kindergarten classroom–but these are tasks which their compassionate classmates fight each other to help them with!  The twins are accepted for who they are within their microcosm of society, and that’s all that matters to them, or me.   These are bright spots for me during times when we struggle with ill-functioning school bus lift systems, or short circuiting problems with the wheelchairs, or the seven week wait time before they can get their flu shots.

 

 

 

 

 

 

 

 

 

 

 

Now for the factoids:

SMA is the #1 genetic killer of children under age 2.

1 in 40 people unknowingly carry the gene for SMA.  Few have any known family history of the disease.

More than 50% of babies born with SMA pass away before their 2nd birthday.

SMA affects 1 in 6,000 babies born.  Worldwide there are 490,000 babies born each day overall.  Statistically speaking, that’s 81 babies with the “rare disease” of SMA born each day.

The National Institutes of Health (NIH) recently selected SMA as “the disease closest to treatment”.

SMA is not contagious–it is an inherited condition and one of the 43 muscular dystrophies.

 

Our 7th Annual Arizona Walk N Roll to Cure SMA is upon us.   Proceeds benefit the non-profit Families of SMA, which was founded in a grassroots fashion twenty years ago by families affected by SMA.  FSMA promotes public awareness of the disease, aids newly diagnosed families with protocol of care publications and local networking opportunities, holds educational conferences to educate medical professionals on how to care for patients with this rare condition, and funds cure-focused and treatment-focused research programs.   I serve on the board of the Arizona Chapter of FSMA.  We walk in Scottsdale on Sunday.  You can arrive at 10am and register ($25) at that time if you like.  Or if my story or my children or the cause move you to donate, you can support Team Double Trouble via this link through the end of November.

I know that as parents all we want is to see our children grow and thrive, and we know how lucky we are that we have these sweet cherubs of delight to begin with.  You and I have that in common.  Also what we have in common is that I haven’t finished my “get that smokin’ deal dammit or die trying”  list of shopping priorities for Black Friday next week and neither have you, so go on now.  Scoot scoot.  Go kiss your kids, too.  Extra kisses from me.  xoxo

p.s.  Did anyone’s Black Friday list last year include the Fijit Friend disaster?  LAME.  The commercials had my oldest BEGGING for that thing and she literally spent 6 minutes “playing” with it before declaring “this isn’t what I thought it would be.  Can I ask for something else?”  Yeah, sorry kid.  Welcome to real life.  Parents, do not be fooled!

 

 

 

 

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.

Vote Early and Vote Often

Just kidding, I live nowhere near Chicago.

Amidst all the political noise, I had interesting conversation with my oldest:

Her:  I don’t know about you, but I’m voting for X.

Me:  Oh, I didn’t realize that you knew who X is.  Why are you voting for X?

Her:  Because all of my friends say they will vote for X.  And the commercials prove that X is better than Y.

Me:  Have you asked your friends why they would vote for X?

Her:  No.

Me:  Which commercials do you think prove that X is better than Y?

Her:  I don’t really know.

Me: So you would vote for X without knowing a thing about Y?  Or a thing about X, for that matter?

Her:  I just can’t wait for Tuesday to be over.

Oh dear.  People in charge of stuff, listen to our future:  “I just want it to be over.”  Here I thought I would be enlightening her with a lesson in civics and now I’m trying to explain what rhetoric means.  This, after two months of her father and I carrying on and on about the candidates and the issues.

Apparently children only pay attention when we swear.  Because they certainly can be counted on to remind us of who/what/when/where/how we swore, but may not listen to us for the kind of important stuff.

She helped me scribble in some lines on my ballot.  She disagreed with some of my votes.  I’m not even sure where she got her opinions from but I guess I’m happy that she is aware and has opinions.  As her parent I am committed to guiding her through what will surely be a confusing Tuesday, but I love that we went through the candidates and propositions together, that we had dialogue around my voting choices, and that she looks forward to turning 18 (the legal age to vote in the U.S.).

What we worked on:

 

 

 

 

 

 

 

 

 

 

 

 

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Cassandra can be found on Twitter @aclevergirl.  Learn more about her family’s unique challenges and why they have hope for a cure for muscular dystrophy at byrdsforacure.org.