Tweet this post!

Friday, August 26, 2011

Hexbug. Two thumbs up.

I've mentioned that I spent some time at BlogHer '11.  I spent major quality time at the Big Toy Boo Sweet Suite Event (a kid's toy expo).  One of the toys they sent home in my swag bag was a bizarre--and robotic, intimidating, yucky--looking-item called a HEXBUG.  I don't know what that really means, because the thing is not in the shape of a hexagon.  Maybe the toy is cursed with a hex?  But even if it is? It's worth it because my kids love it.

To my friends who have children with limited fine motor skills:  this is a toy which is best kept somewhat confined (such as within a high chair tray--see video below).  The "bug" seems to run on a watch battery, but uses a simple, small track.  You could do away with the track if your table/surface doesn't accommodate it, but the bug should be run on a level surface with some sort of perimeter barrier.  Because of this, the child should be able to sit up and have some neck control.

That said, once the child sets the "bug" into the track, it's simply a matter of watching and enjoying, and occasionally picking up the bug to reposition it.  There is no further physical engagement with the toy, cognitively speaking, but the kids love watching it, picking it up, feeling the crazy vibrations on the legs, and watching it "sniff" it's way out of the gates.  Their squeals of glee over this toy have been priceless.

For the price ($12.99), it's a great choice for lots of kiddos, including those who need something new but have limited hand dexterity/strength.  I shot a quick video to demonstrate this thing--must admit, I think it's kind of cool.

[I don't ever blog about a product to get paid for it.  (There are many who do, and they're good at it.  I wouldn't be good at it.)  I blog about products which genuinely help my family--typically, if I blog about a product, it's a toy that my special needs twins either love or hate, and I share our experiences in order to help other readers with similarly-abled kids understand if the toy might be a good fit for them.  Also?  The manufacturer has no idea that I own the toy or am writing about it.  If they should choose on their own accord to send one of my kids to college based on my positive review of their product, then so be it.  But I think that critical reviews are important, too.  We parents of special-needs kids waste too much money as it is on things we think will be perfect for our specific kiddos but aren't.

My point is that nobody except you knows that I am yay'ing or nay'ing a product.  Ever.]

Thursday, August 11, 2011

This is SMA.

This is SMA.

Kyle just turned four.  He adores baseball, golf, soccer, tennis, football, boxing, and hockey.  He thinks he can play these sports when he "gets bigger".  He will get bigger as he grows older, but he will never stand.  He won't play these sports, at least not how he imagines he will.  And we are the ones who have to tell him that.  He is in a wheelchair.  Cognitively, he is advanced (that means smart) (I only clarify that because even I wouldn't have known what that meant until years ago when someone told me that he is cognitively advanced).  This week, he told the O.R. staff at the hospital that he can't wait until he gets older and he can stand.  He happened to be in the O.R. to have his Achilles tendon completely sliced through so that his feet won't turn out.  This means that even if a cure for SMA was announced two hours later, he can never stand on his own.

This is SMA.  

This is Lauren.  She is Kyle's fraternal twin sister.  She also has SMA.  And a sense of humor.  She is hilarious.  She sings nursery rhymes and Disney show tunes.  She can speak "Dora Spanish".  She loves to eat melon, any kind of melon.  And chocolate chip waffles.  She wants to be a veterinarian when she grows up.  She also wants to ride a bike and ice skate "when my legs get longer".  We get to be the ones to explain to her that no matter how long her legs get, she won't be able to do those things.  But she is special--besides driving her own power wheelchair, she can do things that other four-year olds can't, like competitively play Connect 4.  She wants to go to Disney World and be a princess, but her favorite Disney character is Daisy Duck (awesome!).  She can't crawl, turn over, lift up her head while on her tummy, or walk.  She is in the 3rd percentile for her age, and her g-tube surgery is scheduled for later this month.  She struggles to hold herself upright in her highchair, so her scoliosis surgical consult is scheduled for next month.

SMA stands for Spinal Muscular Atrophy.  From the moment of conception, my twins' motor neurons weren't right.  They were born crying and altogether pretty pissed off (the lighting made them look sort of bad, I don't blame them), but many newborns with SMA are born silent--these are the SMA Type 1's.  They struggle to breathe, struggle to move.  Mother Nature, and evolution, are screaming at them to scream! when they're born, but they are thrust into our world still struggling to take any sort of breath.  Breathing requires muscles and motor neurons that do what they're supposed to do.  Those babies don't tend to last long.  Sometimes they die before they even get the bloodwork back with their SMA diagnosis.  Other times, their parents are faced with life-and-death care decisions before their child can even have her first mall portrait taken.  Other times, SMA babies seem completely typical until 6 months old, or 12 months, or two years.  It's the "atrophy" in Spinal Muscular Atrophy that makes the parent suspicious that maybe there's a problem--these are the SMA type 2's and 3's (Kyle and Lauren are type 2).  Even then, the prognosis is grim.  Children born with SMA (non-type 1's) sometimes live until their teens, and in some cases even beyond their teens.

What lames the one causes the death of another.  They're all missing the same motor neuron.  There is no prejudice with SMA.  And there is no cure.  But if there was (but if there was!), the thing that cures the one can cure them all.

SMA is one of many muscular dystrophies.  1 in 40 of us are carriers.  There is a screening test to determine whether or not you are a carrier.  You can ask for the test, before or after you become pregnant.  

I haven't worked since just after my twins were born.  I left my career to schedule and keep up with regular appointments with the neurologist, pulmonologist, orthopedic surgeon, gastroenterologist, dietitian, orthotics clinic, wheelchair clinic, home health, and surgeons.  I never managed to find the time to become PMI certified when my office was a cubicle, but given my experience sitting in waiting room after waiting room, I could teach volumes about "scope creep".  I would give all my Six Sigma certifications, and more, to not know what I know about children and terminal disease.

SMA is life changing--not just for its direct victims, but for their parents and families.  We are exactly like you.  In fact, many of us had typical healthy children before we ever needed to know about SMA.  If there was ever an ideal Project Manager, it's the parent of a medically fragile child.

That's all.  I just wanted to tell you that.  August is SMA Awareness Month.  If you didn't know what SMA was ten minutes ago, you know now.  It's all about the kids.  Ask me anything.  I've heard it before, and assuming you are not personally attacking my children, I won't take offense.  I'd be happy.  Not bothering to ask means that we're being ignored, and my children will not be ignored.  Ask away, I'm thrilled to explain.  I rarely get asked questions, other than "how fast does his wheelchair go?".  (5.2mph.)  Ask me.  I'll tell you.

Wednesday, August 10, 2011

BlogHer '11 Recap

With my first ever BlogHer experience under my belt, I am realizing how addictive conferences like this might become.  I fail to see how a long weekend filled with inspiring women and a whole lot of drink tickets could ever be not fun.  If I call it “an amazing weekend, filled with meeting great people and attending fantastic workshops”, will you hate me simply for being so uncreative and echoing the impressions pretty much everyone else has shared?  Because it was all those things, and I can’t think of other ways to express it!  This trip rates approximately fourth on the list I call Great Trips of My Lifetime.  Preceding BlogHer ’11 on that list, we have my first trip to Disneyland when I was five years old, our English Premier League Soccer and Marbella Beach Extravaganza of 2003, and my solo vacation to one of my favorite cities in the world-- Vancouver B.C.--where I met a great many of my favorite hockey Twitter friends last year.  But BlogHer ’11 is unique in one specific way for me—on none of those other trips was I given sex toy in a swag bag.  Holla, BlogHer ’11! 

I’ll agree to spare you the minutiae of such a long, kick-ass girl’s weekend, but let it be known that there is no better road trip partner than one Kelly Loubet.  There is never a shortage of thoughtful and compelling conversation, giggle-inducing silliness, or 80’s arena rock ballad sing-offs when one is sharing vehicular space with Kelly.  Sure, at 5am when we left my driveway we were both a little quiet—but as soon as the coffee kicked in, one of the most enjoyable road trips I’ve ever experienced was underway.  I had forgotten what it was like to drive for more than fifteen minutes without bickering over DVD selection or 132 "are we there yet's" before making it to Gila Bend.  

We spent Thursday night at The Big Toy Book party.  I had my first opportunity to experience the Kinect on the Xbox 360 and was impressed (though this technology is fantastic, it does not involve a game controller and does require full use of the entire body).  I also got to test out some of the new Leap Frog products, including the not-yet-on-store-shelves $99 Leap Pad, which looks like it could be a great tech toy for my four year olds who are advanced cognitively but have limited hand/wrist dexterity and strength.  I would love for the twins to be able to test out this toy to see if it’s a worthwhile investment while we wait for the price of iPads to come down.  But the best part is that the Big Toy Book party gave us large swag bags full of toys for the kids!  The items that Kelly and I agreed our kids wouldn’t be interested in are resting in a “treasure chest” at our local children’s hospital.

Friday was the most fulfilling of the days I spent at BlogHer ’11. This day featured the extended workshop session for bloggers with special needs children.  The two hour time slot was both spent discussing topics around blogging about our unique special needs circumstances and bonding over our general feelings and frustrations that so many parents of special kids share.  If any of you blog about your special needs kids—even just in a private manner—I urge you to consider attending BlogHer ’12 next year in New York.  The connections made in the room during the Special Needs mini-con, and the camaraderie and resources it will expose you to, will make it worth your time.  I promise.  My favorite speaker was Robert Rummel-Hudson, whose book Schuyler's Monster so far ranks as the most heartily funny yet tragic memoirs I’ve ever read.  My twins’ condition is nothing like that his daughter suffers from, but I identified so much with his perspective and his sense of humor and I know it will resonate with many of you.  I strongly recommend anyone to pick it up and read his story.

Saturday was a bit of a lazy day for me.  It eventually ended with a perfect evening spent at the Aiming Low party and the CheeseburgHer event.  If anyone knows how to party, it’s 3,000 women bloggers hundreds of miles away from home in a ballroom filled beds and all-you-can-eat McDonald’s cheeseburgers and fries.  And—well, yeah--the booze is another story which I would share if I could remember it.

I have more thoughts to share regarding the special needs mini-session, which I’ll post in the next week or so.  If you’re interested in reading what people have to say about that special needs session and you’re on Twitter—or hell, if you just want to Google it—follow #bh11specialneeds.  Good people.  Good stuff.

BlogHer is a website, but also an annual convention for female bloggers of all types.  Next year will be in NYC the first weekend in August.  Be there or be someplace less.  


Monday, August 1, 2011

BlogHer '11

I will be at the big BlogHer conference later this week.  I have a long list of people who I want to meet up with, but if I am not aware that you're going you're probably not on it, so tell me!

I will be attending two private parties on Thursday night, and I hope to find my way to the workshop for parents who blog about their special needs children (I just can't remember when/where it is)--so far, these are my only planned activities, aside from enjoying a kid-free mini-vacation and gorgeous San Diego.

And I know that if I'm there for four days and never see the inside of Dick's Last Resort, I'ma be ticked off.

See you there?