More Yin and Yang

The twins went to bed tonight on their own terms:

1.  Lauren fell asleep with her Disney Princess sing-a-long CD

2.  Kyle fell asleep listening to a baseball game on the AM radio.

Lauren has been relatively okay over the last couple days.  Kyle has been suffering from junky lungs, lots of cough treatments, sore throat, and puking blood.

It’s as if the “yin and yang” of opposite world never stops.  As if they don’t realize that they don’t HAVE to one-up each other.    Eh, YOU tell ’em.  I’m still sleepy.

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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.

Have you seen my Easter egg?

Apparently half the country is dealing with blizzards and stuff, which is weird to me because we’re sweating down here in the desert southwest.  So what are all the parents down here stressing about this week?  If you answered “Easter”, you are correct!

So everyone, attend to your Easter errands, celebrations, and obligations.  Go on, I’ll wait.  BUT–when you’re done with all that stuff, do yourself a favor and buy up all the extra egg dyeing supplies at the grocery store.  This stuff costs what, like a couple bucks?  And how insane do your children make you in the dead heat of summer when there is not a darned thing to do indoors?  Is there anything wrong with colorful hard boiled eggs in June?  Are you catching what I’m throwing down here?

There’s not a kid in my neighborhood who doesn’t LOVE dyeing hard boiled eggs.  So hey you, be the hero.  Buy up all the egg dyeing hardware NOW–your mid-summer self with a household full of bored kids will LOVE you for it.  It’s the cheapest craft project EVER.

Eight years of being a mom during the summer months hasn’t been for nothing.  Let me share all this hard-earned wisdom with you.  You don’t even have to give me credit for it.  This is all you, sista.  I am serious as a heart attack.  As a myocardial infarction, even.  Do it.  Dooooo it.

eggs1 eggs2 eggs3 eggs4

 

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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.

iPad Apps for Our Kids With Special Needs

Ever since the twins were the lucky recipients of a Project Mariposa SMA iPad grant last year I have been on the hunt for iPad apps appropriate for their age level (5 years) and cognitive abilities (advanced) yet simple enough for them to navigate with their limited fine motor skills*.  Thankfully iPad2 technology is advanced enough to sense even their lightest touch, but we know other children with more severe physical disabilities which prevent them from being able to use many children’s toys and so the iPad has become their gateways to their educations, entertainment, to the outside world.

In the spirit of helping other special needs families discover some great apps for their kids’ iPads, I’d like to direct you towards some ideas–and while my kids have certain physical challenges, they don’t fall into the demographic for whom many of these apps were designed.  Cognitive delays, speech delays, ASD delays, they are all included:

Say Hi!  AAC – An iPad Communication App For Those With Limited Movement

Special Needs Apps

5 Special Needs Apps You Need to Know About

Moms With Apps

Southwest Human Development library of special needs apps and reviews by therapists

One issue which never changes and I get all snarly about is that ‘special needs apps’ tend to be way more expensive than the mindless ones.  I get that these apps can cost much more to develop, but parents with a reasonable income can only afford so much.  Which reminds me, parents–ask for iTunes gift cards at all gift giving occasions if you think your kiddo would benefit from more iPad apps than anything else!

Disclaimer:  frankly, I am Team Android.  I wish and hope the apps I link to above are available for Android, but I doubt it.  If your kiddo is on a droid and you can’t find these for him or her, I sure am sorry.  Also:  HEY, DEVELOPERS.  WE’RE OVER HERE.

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My boy-girl twins are 5 years old and physically disabled with a type of muscular dystrophy called Spinal Muscular Atrophy.  They are verbal, social, and intellectually advanced but lack the ability to pick up the iPad (for example).  I am very interested in the new iPad Mini and how it might be a better fit for them, but for now the iPad is sufficient for us to experiment with educational games and handwriting apps.  But we know many other families dealing with more severe physical limitations in their kiddos, and families dealing with non-physical disabilities.  All these kids can benefit from some well developed apps.  Try these out and give feedback, feedback, feedback.  UAT seems to be a lost art, let’s take these firms to task!

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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.

Forget the money tree. I have a credit card tree. Apparently?

My newly nine year-old:  MOM!  I CAN GET A JUSTIN BEIBER CREDIT CARD!  SIGN ME UP PLEASE!

Me: [seriously?  Before I barf directly into her face can anyone confirm that such a thing exists?]

Me:  No.  You’re not getting anyone’s credit card.  Do you realize that every time I use our credit card that we have to pay the bill back in real money?  It is not free.  Nothing about a credit card is free.  Same goes for Justin Beiber.

Her:  But I just want it.

Me:  Right. Do you understand how a credit card works?  I pay the bill for every credit card, once a month.  We could never control how much money you spend if you had a credit card.  You are nine years old.  I would rather give you cash to buy things–at least this way I could control how much you buy.

Her:  [pause, thinking] I’ll take the cash…

Me:  Nice try.  [[leaving room]]  Here, have the TV remote.  You can’t buy anything with that.

Her:  Yeah. I can.

Me: …….

 

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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.

Make a Difference.

“Make a Muscle, Make a Difference.”

Lauren, aged 5 and with a huge grin:  Mom, am I going to have SMA forever?

Me:  ….yes.

Lauren:  aw, snap.  [pause]  Can we get a bouncy house for my birthday even though I can’t go in it?  I want to watch everyone else jump.  It’s so funny when their hair flies up in the air.  I wish I could go in the bouncy house.

Lauren:  Will I ever be old enough to walk?

Me:  It’s not your age, sugar.  It’s your muscles.  Your leg muscles aren’t strong enough for you to walk on them.

Lauren:  But I can never run if I can’t walk.  How do I run?

She has a point, but how can I look at this little girl and tell her that she’ll never walk?  I never lie to them, just gloss over certain details until the twins are a little older.  But what do I say to a kid who just wants to jump in a bouncy house, but she thinks she can’t only because she’s “still a baby”?  She’s too young for Punnett squares, though that concept really is the beginning of the fundamental answers to her question.

Their dad and I are carriers for the SMA gene.  We didn’t know.  We already had one beautiful and brilliant daughter and were hoping for another.  Lickety split, we found ourselves in an operating room while our doctor delivered not one but two babies, and the next thing we know we’re on a first name basis with pediatric neurologists.

Here’s where I distract you with photos of happy, charming children:

classphotos2012 SAMSUNG dbacksopeningday hansolo Lauren Disneyworld 4 TieFighter

 

My kids are the real stars here.  They are the heroes.  They are the most patient, caring, tolerating, understanding beings on this planet.   They are so trusting and happy and brave.  They brighten every room they enter–that’s not just a mommy perspective on my part, but an observable phenomenon which happens wherever they go.  They are a joy, and I get to be the one to share them with all of you.

I’m just a regular person.  I have all these kids, but I don’t really know what I’m doing here.  The ‘having them’ part was relatively easy.  It’s the ‘parenting them through physical disabilities’ part that sometimes presents challenges.  I know I’m not the first or last person to be challenged with such a task, but if I can help other parents avoid conversations like the one I just had above then those are the umpteen reasons I have to champion this cause.  Can we cure muscular dystrophy already?

The 2013 Muscle Walk in Tempe:  Walk with us.  Donate to our team.  Show your support.  Research details and progress here.  Donation and participation details here.  C’mon, it only takes 19 muscles to click a link (I completely made that up, it could be 200 muscles for all I know).  But I will take your money however it comes.

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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.

The Internet. Oh boy.

I experienced something new recently and I don’t know what to think about it.

I posted a photo online of one of the twins last year.  It was a cute photo.  At the time all my Facebook friends “liked” it.  It was a great photo, I admit.  But that was months ago.

Last week I was forwarded a forward of an email with a screen shot of my photo from someone else’s page on Facebook and a “FYI!  Great pic!” message.  But the photo on Facebook was just posted that day, and from someone I don’t know.

I know we live in this digital age, where everything is right here and right now and ‘shared’ and ‘liked’.  If I post a photo online, I am aware that I lose ownership and control over that photo.  With each photo I post, I think about that.  “Am I okay with literally every person in the universe seeing this?  Am I strong enough to handle criticism (there will always be someone who finds fault with something about a photo)?”

But this photo really made the rounds.  When I posted it originally, 80 of my friends ‘liked’ it.  When it was posted this time, it got 4,000 ‘Likes’ and over 300 ‘shares’.  In three days.

What was intended to be a great photo of a moment with my kid turned into something bigger–not only the heart warming feeling that comes with the knowledge that our sweet photo made so many people’s day, but also a feeling of vulnerability on my part, after being made aware so many strangers saw what my kid looks like.

In the end I am that mother bear, ferociously protecting her young.  I love that my kiddo’s photo is responsible for making so many smile, but on the other hand 4,000+ people who I don’t know can now pick my five year old out of a lineup.  Some had great responses and feedback, but it was mainly a reminder that we do not post photos in a vacuum here.

Please be mindful about the photos you post online.  Realize that once you post it, you can’t take it back.  It’s out there, somewhere and always.  Also realize that once you post it, you can’t control a thing about it.  I bet this sounds obvious to you, but imagine stumbling upon a personal photo on an unrelated site.  You can’t even get angry at anyone.  If you post it anywhere, it’s fair game.

Just be careful.

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The organizations who posted my photo were legitimate charitable causes and posted it in order to bring smiles to their followers and get engagement from them.   They are honorable people and causes, and I hold nothing against them.  It was a lesson for me though, to remember that these internets are a big place.  Don’t post things that you might be uncomfortable with either your family OR strangers seeing.  This should be obvious to us, but just a reminder.

Okay, FINE.  Here is the photo I’ve been talking about.  I’m sure I would have posted it eventually!  Yeah, it’s pretty amazing, remarkable, adorable.  Should you disagree, I know like 4,000 other people who will argue that it IS.

Kyle Han Solo 2012

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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.