Zebras & Ghouls & Bears, Oh My!! {31 for 21}

Today is Halloween.  Thankfully Sadly, it's also the last day of the 31 for 21 challenge.  I definitely got behind from time to time but ultimately ended up with a total of 31 posts so I'm viewing it as a success. As much as I enjoyed sharing Reese's story, I'm relieved to no longer have homework on a nightly basis.  It definitely got me back into a blogging mindset but I think I'll be more like a weekly rather than daily blogger.

On that note, I'm ending the challenge in the easiest way possible...a bunch of cute photos of cute kids.

 Our little Butter Cup (Ben's idea - I can take no credit)

 No nap + crazy homemade costumes = disaster

 The gang of 99th Terrace minus one belligerent green M&M

 who chose to lose her mind at the feet of her mother instead

 Thankfully she has a Jekyll & Hyde personality & all was well when Goose & Maverick appeared.  Unfortunately the enthusiasm might have been misconstrued as evil - the poor twins look a bit rattled.

 Mallory showing her the trick-or-treating ropes

And she was a pro by the end of the night

Happy Halloween & Down Syndrome Awareness Month!  Thanks for taking the time to get to know all about Reese & her extra chromosome.  

You Tube {31 for 21}

Dancing machine...

X-rated {31 for 21}

Occasionally when patients are admitted to the ICU they are either too sick or too impaired to provide any information about their past medical history.  And when family isn't around to fill in the gaps, we have to use what's available.  Often times that means we use their scars to tell a story.

Reese's little body already has quite a story to tell.  Down syndrome, previous open heart surgery & past feeding difficulties would all be obvious with just a cursory examination.

I thought a lot about Reese's scars before she underwent the knife.  Would they be another source of potential teasing?  Would they affect her body image or make her self conscious?  Would she always opt for one-piece bathing suits over bikinis? (think Dad would be just find if that were the case)

In all honesty, I don't even notice them anymore.  Partly because they are in locations that are normally covered, but mainly because they are just part of who she is.  Just like I don't notice Reagan's stork bite or the scar over Ben's eye.

If anything, Reese's scars are daily reminders of her courage & resiliency.  Occasionally I'll catch a glimpse of the white line peeking out above her shirt collar & I'm reminded that life is precious.  I know fellow heart moms will agree.  We were at one of Reese's sign language classes when another mother noticed the faint line & gave me a knowing glance.  She lowered the top of her son's shirt to reveal a matching faint line & we both smiled.  Smiled because thankfully the surgery is part of the past, but also because our kiddos share a special bond that identify them as pretty tough cookies.

Reese's skin doesn't lie.  Her roadmap of scars is proof she had a challenging first year.  I like to think that if the saying "whatever doesn't kill you makes you stronger" is true, than Reese is freaking indestructible.

Wordless Wednesday {31 for 21}

Bathtime is a mutual fave around here...

 It is so hard to get this girl to smile

 Don't mind the big wound on her forehead - long story

 I told you she is a little Hoover - she even drinks bath water

 A hint of a smile - we are making progress!

The finished product

Well of Kindness {31 for 21}

My brother wrote a moving piece about having a niece with Ds.  In it, he talked about humanity's Deep Well of Kindness.  I have been witness to this particular Well on many occasions since Reese's birth, but think the events of the last few months take the cake.

The Step Up For Down Syndrome Walk was this past weekend.  The process of registering & donating for this event began months ago.  Since this was the first year of putting together a team, I didn't really know what to expect.  The website asked you to set a goal for the amount of money you hoped to raise.  I thought about that number a lot & sort of cringed when I asked Ben if he thought $2000 was too lofty.  He sort of mulled it over and finally said, "well, a true goal shouldn't be easily attainable," so $2000 it was.  Boy, did I underestimate the Deep Well of Kindness within my friends & family.

We surpassed our $2000 goal in weeks.  I was overwhelmed, actually shocked by the generosity of others.  We received donations from everywhere.  From high school friends I hadn't talked to in years, from Chicago pals who'd been following Reese's story on our blog, from friends of friends who'd never met our girl but still cared for her well-being and from complete strangers who I guess just felt compelled to help because they are good & kind people.

I thought about upping our goal but didn't want to appear greedy.  Then we were surprised by another act inspired by the Deep Well of Kindness.  My longtime friend, coworker & Sporting KC fan got two autographed items donated to Reese's cause (all unbeknownst to me).  She & her equally awesome boyfriend suggested raffling the items & donating the money to Reese's Step Up fund.  Our fundraising total at the time was $4000-something so we decided to shoot for a goal of $5000.  I announced the raffle on Facebook & we surpassed the new goal within a few hours.  Of course I was overwhelmed again & more tears were shed but I wasn't nearly as shocked.  I had already experienced the Deep Well of Kindness & knew anything was possible when you combine a good cause with good people.

Reese getting some love from my amazing friend, Dana

The official fundraising deadline was last Saturday.  At that time we had raised over $6600.  I was amazed.  And proud.  And thoroughly indebted to each & every one of you who supported our girl.  Imagine my surprise when I checked the website a few days later to see that number continuing to rise.  Apparently deadlines don't mean a thing to my friends & family & complete strangers - they give just to give.

Meet Lyllian, a busted knee didn't slow her down.  I should mention Lyllian & her mom had never met Reese...or me...or Ben before the walk.  Amazing people.

 



The week before the walk my neighbor shared a conversation she'd had with her 9 year-old twin daughters.  They'd heard about Reese's walk & wanted to learn more about Down syndrome.  After conducting their own research online, they both decided they wanted to contribute some of their own money to the cause (FYI, their parents had already generously donated AND entered the raffle).  So I found it only fitting that the money they hand delivered to Reese's door was the money that propelled us over the $7000  mark.  Apparently the Deep Well of Kindness doesn't apply only to adults.  And Kamryn & Kiersten are already entertaining several fundraising ideas for next year.  The Well is overflowing in these two girls.

Then Saturday was upon us & the weather was not cooperating.  To say it was cold is an understatement & I thought, "uh oh, this is gonna keep the crowd away."  Boy, was I wrong again.  Reese's Rebels came out in full force as did the rest of the 9,000+ walkers that day.  Dear friends bundled their babies beyond recognition because they couldn't stand not walking with Reese (I know, double negative). 

 Please notice the overwhelming trend of hats...

 and blankets...

 and coats...

and layers...

it was cold!!!

At least there were ponies!!

 

Kids missed soccer games & big kids missed the Mizzou Homecoming game both in person & on TV but, in their own words, "some things are just more important than a game."

 Aunts & cousins braving the cold...

as well as FaceTime buddies who singlehandedly raised hundreds of dollars for Reese's fund

 

Some of Reese's friends even designed their own attire for the special day.

 

 The infamous Lukie

And the twins who have made appearances in almost every post

 

And every single attendee gave up precious weekend & family time to not only support Reese & our family, but to support a cause that touches thousands of lives. 

Many thanks to Elece for the awesome banner.  And many thanks to Ben for inventing the coveted PVC banner frame.  Boys and their toys... 

 

Reese's Rebels Rock!!!

 

I've discovered this Deep Well of Kindness does not apply only to Reese & her pals with an extra chromosome. 

My friend Karen recently started an online campaign to do something extraordinary for her cousin & her family.  Directly from my friend's website:  Jill and Ryan Taylor have been married for almost 10 years and have three beautiful little boys. Ryan is 37 and has been living with stage IV colon cancer for the past four years. As Jill's cousin, I've been watching their story unfold for years via Facebook and for a long time I've wondered what can I do for this family? I finally stopped wondering and just asked, "Jill, if Ryan could have anything, what would he want?" She responded, "A family vacation. And maybe the chance to meet Guy Fieri, that celebrity chef from Diners, Drive-Ins and Dives."

The campaign was launched 7 days ago.  They are $300 short of their $7000 goal.  Yep, that says seven thousand dollars.  We were fortunate to be one of the first to donate, when that $7000 goal still seemed daunting, & I feel like a giddy kid on Christmas morning every time I check the website & see their total quickly rising.  I talked to Karen at the walk & she said the same thing.  Sure, most of the donations are coming from friends & family, but some are coming from absolute strangers.  Random friends of friends of friends who saw the story on Facebook & felt compelled to help.  People, this Well of Kindness is serious.

And it doesn't always have to be about money.  I know times are tough.  You see it every day in the news & in the foreclosure signs on houses in the neighborhood. 

Ben's coworker & his wife recently gave birth to a beautiful baby girl.  Their little bundle decided to make her entrance VERY early & was in the NICU for weeks.  Her mom was prepared for a 12-week maternity leave.  She had worked hard & saved up plenty of PTO so she could enjoy those months at home with her newborn.  Well, as it often does, life had other plans & she spent those 12 weeks in the hospital instead.  Her coworkers got wind of her plight & the Deep Well of Kindness took over.  Within a few days, this mama's PTO bank was overflowing & she was able to spend every day at her daughter's bedside & even a few within the comforts of their own home.  All without missing a paycheck & all because of the kindness of others.

The Deep Well of Kindness is apparent every day.  The Well doesn't always make headlines but it is abundant.  Maybe it's because I'm more aware of how the Well truly impacts the lives of others or maybe it's because we've been on the receiving end of that Well many times over the last 13 months, but I am in awe of it.  And I am beyond thankful.  So are Reese and her friend, Brooks.

A match made in heaven

Vitamins & Vaccinations {31 for 21}

I have a science background.  I went to PT school & then nursing school so have taken more biology & chemistry & physiology courses than I care to remember.  Unfortunately I had little knowledge regarding an area of science that would've served me well after Reese's birth, genetics.

I recalled basic information about chromosomes & genes & DNA but didn't really understand how having 3 copies of the 21st chromosome would affect Reese.  Needless to say, I've learned more about chromosomes in the past 13 months than I did through 19 years of school. 

Much still needs to be discovered about how that extra chromosome affects development but scientists know far more today than they did even 10 years ago.  And many of those scientists describe Trisomy 21 in terms of a metabolic disorder.  To oversimplify, the extra chromosome causes an overexpression of genetic material resulting in biochemical abnormalities & an overproduction of free radicals. 

Some theorize that supplements & other herbal remedies can help reduce or eliminate some of the problems associated with this overexpression.  Nutrivene-D is the big name in the supplementation game & they have a special concoction formulated just for kids with Ds.

I am intrigued by this information.  It makes sense to me that having 3 copies of a chromosome can result in metabolic disturbances.  That extra genetic material has to be expressed in some way & I'm sure it explains some of the common characteristics of Down syndrome.  My science-minded brain appreciates the fact that very smart people are trying to identify how that extra chromosome affects Reese & her pals.  I also appreciate the fact that very smart people are also trying to identify treatments &/or therapies that will help improve the quality of life for all individuals with Ds.  What my science-minded brain doesn't like is the lack of evidence-based research that proves the efficacy of these treatments.  As far as I know, there aren't any double blind experiments that evaluate the efficacy & safety of Nutrivene-D (maybe they do exist - I just haven't been able to find them).  Lots of kids with Ds are taking these supplements (I believe one site guesstimated the number to be ~5000) so there are a lot of parents buying into the concept.  And some parents are very vocal supporters.  I've read account after account about how Nutrivene-D was absolutely life changing, how their kiddo exhibited significant gains in speech or motor skills or cognition within a matter of days of the first dose.

These parents have no reason to lie.  I doubt any of them receive any royalties from Nutrivene-D or any other company in the same industry.  And if the results are as significant & profound as these parents claim, then I'm even more intrigued.  But I hesitate to put anything into my daughter's body that hasn't been tested & retested & approved a million times over by the FDA.

So, I guess the whole point to this post is that I'm not really sure where I stand on supplements.  In theory, the whole idea makes sense to me but in reality, the territory is still a little too uncharted for my liking.  And in no way do I consider myself an expert on the subject.  Lots of moms & dads out there in blogosphere are far more educated on the subject & I enjoy reading about their experiences.  I have no doubt there will be more definitive research on this subject in the future which will make my decision whether or not to supplement a much easier one.

Last but not least, a few words on vaccinations.  I am a FIRM believer in vaccinating children.  I will argue against the autism link until I'm blue in the face (and also show you article after article about how Dr. Wakefield has been proven a fraud & all conclusions of his studies have been debunked.)One of my first questions to Reese's pediatrician during her initial visit was whether or not she would be on a regular vaccination schedule.  (I had read that some of our kiddos do better with a modified vaccination schedule, possible due to an immature immune system.)  He was unwavering when he said yes & so Reese has gotten every single one of her vaccinations on time.  She also received the Synagis vaccine last year during cold/flu season to hopefully prevent RSV which added six more shots to her regime.  Thankfully, she's had absolutely no problems & we will continue to keep her on a regular schedule for as long as possible.  That being said, I know a lot of parents have their kids on a modified schedule & it works just fine for them.  I don't think there's a right or wrong answer as long as the vaccinations are being given.  Okay, enough of my soapbox.

Parents make tough decisions every day regarding their kid's health & well-being.  Having a child with special needs makes those decisions a little tougher & often leaves me feeling overwhelmed.  I trust science but I also trust my gut and think between the two, Reese is gonna be just fine.

Ukraine {31 for 21}

This is a post about Reece, but not of the female variety.  It's about a little boy named Reece who is the inspiration behind a charitable organization that is very near & dear to my heart, Reece's Rainbow. 

Children with Down syndrome and other special needs are often abandoned at birth and hidden away in orphanages and mental institutions abroad.  (BTW, I needed a "U" post & a large portion of the abandoned kiddos are from Eastern Europe so hence the title Ukraine - reaching, I know).  Reece's Rainbow raises money as adoption grants to help families with the high cost of adopting these children and giving them the life and future they so richly deserve. The average cost for travel, etc to save one child is approximately $25,000. The availability of a sizable adoption grant literally means the difference between life and death for every child.

Directly from the Reece's Rainbow website:
In only 6 years, we have found forever families for more than 800+ orphans, all with Down syndrome and other special needs. We have disbursed more than $4 million in grant funding to save them. We strongly believe that if every waiting child had a full grant, there would BE no waiting children!

To be honest, I have a hard time visiting this website.  I don't venture that way very often & when I do I usually end up a weepy, puddly mess.  When I look at the pictures of the children waiting for a forever family, I feel completey & utterly helpless.  And pissed.  These kids did absolutely nothing wrong & were discarded by their parents, dumped at the doorstep of an orphanage like a piece of garbage.  Did they ask to be born with an extra chromosome or be deprived of oxygen at birth resulting in cerebral palsy or inherit an HIV+ status from their mother?  No.  They are the epitome of innocent.

Reece's Rainbow performs miracles for these kids.  Without them, more than 800 children would not know the beauty of finding a forever family.  These kids would still be waiting in orphanages or even worse, would've been transferred to mental institutions to literally waste away.  And the unthinkable would've certainly happened to a few - they would've left this world without ever knowing the love & security of a family.  Without ever cuddling up to a bedtime story or falling asleep in the arms of a parent.  Without ever waking up to a mother's familiar face or hearing an "I Love You."  It is criminal.

I see Reese in every waiting child's face.  I imagine her confined to a crib with little human contact.  I picture her in soiled, ill-fitting clothing.  I envision her spirit & smile being quashed by neglect.  And it makes me insane.

Does this face remind you of anyone?  This is Annalisa & she's been waiting for a family since February of 2009.  Her biological parents waived their rights after she was diagnosed with Ds.

I've recently been witness to the amazing goodness that resides within most people & I plan to put that goodness to use.  I will blog about one of Reece's Rainbow's kids every month & ask each of you to either pray, contribute or share.  Maybe, just maybe, we can find a family for Annalisa or one of her pals.  

Because every family deserves the blessing of a child with Down syndrome...

Therapy {31 for 21}

As documented before, Reese was evaluated by FirstSteps within weeks of her birth since she qualified for services automatically with a diagnosis of Ds.  Kids with Ds reach milestones at a slower pace than typical kids.  The progression is usually the same, it just takes them longer to master the tasks.   I remember wondering what the heck a newborn was going to accomplish in therapy, but it's amazing what these therapists think up.

We had a rough patch before her heart surgery when her energy level was in the toilet & we were worried about expending too much energy, but since her repair she's been a therapy machine.

Let me just give a quick shout out to all the moms & dads who work fulltime during the week & still make therapy a priority.  I am home Monday-Friday & still have to occasionally juggle Reese's therapy schedule with our everyday lives.

Reese has occupational therapy once a week, physical therapy twice a week (one session is a joint session with OT) & speech therapy once a month.  This may sound like overkill but it's actually very manageable.  And it gives me an excuse to clean my house since the therapies occur in the comfort of our home.

Our PT told us water therapy can be very beneficial for kids with Ds so Reese has been in AquaTots since she was about 9 months old.  We will actually pursue 1:1 aquatic therapy which is offered at our Community Center when Reese is a little older.

And we are toying with the idea of treadmill therapy.  Way back in my research mode (the mode is not over, it's just not as crazed), I ran across this article about the benefits of treadmill training with infants with Ds.  I mentioned it to Reese's PT & she was intrigued.  Kids with Ds typically walk around a year after their typical counterparts but research suggests that treadmill therapy can knock months off that timeframe.  I'm not going to go into specifics since the article is very thorough & Rick Smith over at Noah's Dad writes extensively about this subject, but the concept is simple:  practice makes perfect.  Support a kid over a moving treadmill and they will take steps.  It won't be pretty & it takes some serious support from parent or therapist, but eventually the child will become more proficient.  Now that our little observer has finally decided she's interested in pushing to sit & scooting across the floor, I'm thinking it may be time to invest in a treadmill.  So if anyone has a treadmill collecting dust that can reach a blazing 0.5 mph, I'm interested.

Noah showing off his skills...courtesy of Noah's Dad

Sign Language {31 for 21}

I have a confession.  Reagan is an addict.  What started out so innocently a few months ago with the arrival of a bright shiny DVD in the mail has gradually morphed into an obsession.  I've created a monster.  A Baby Signing Times monster.

I've written about Ds & speech delays before.  To be perfectly honest, this is the area of development that causes me the most worry with Reese.  I know she will eventually walk & eat with a fork & drink from a cup, but I don't have any idea how well she will communicate. 

According to Sue Buckley, a guru in the field of speech & language in individuals with Ds, "children with Down syndrome are usually good communicators. They are keen to interact socially right from infancy but they have to rely on non-verbal skills such as gesture for longer than other children because they usually experience significant speech and language delay."

Can you imagine having the receptive language to understand what is going on in your environment but lacking the expressive language to be able to convey your needs or be an active participant in conversation?  We see a lot of folks in the ICU following strokes who often experience the same phenomenon.  The frustration is palpable.

Thankfully, a very proactive & bright group of people hypothesized using sign language with kids with Ds might help alleviate some of this frustration.  It would provide a way to communicate until speech was more developed.  Well, they were right & the sign language boom is in full force. 

That's all fine & dandy, I thought, but how will I teach Reese to sign when all I know is the alphabet (okay, part of the alphabet)?  Enter Baby Signing Times, a.k.a. Reagan's current addiction.

I heard about this series EVERYWHERE.  Some parents equated it to "baby crack" & it was plastered on the forums & blogs I frequented shortly after Reese's birth.  Of course I jumped on the bandwagon & our collection keeps growing.

I distinctly recall the first moment I witnessed Rachel Coleman cheerfully singing & signing the theme song.  I looked over at Reagan & she was mesmerized, almost catatonic.  Nine months later & the kid is still hooked.

Reese is slowly gaining an appreciation for the antics of Hopkins & Alex & Leah but she loses interest quickly.  Reagan, on the other hand, is a true addict.  Unlike most addictions, this one has proven quite beneficial.  I'm guessing Reagan knows at least 100 signs but it's actually probably closer to 200.  She is now teaching me.

Articulation is not one of Reagan's strengths.  I can understand most of what she's saying but there are still times I have no clue.  So now when I'm struggling to understand her, she opts to sign the word instead.  It is so freaking cute.  And awesome.  Reese will have the best teacher & interpreter in her sister. 

There is some controversy in the Ds community regarding the use of sign language.  The opposers speculate speech will be even more delayed if our kids rely on sign.  Personally I think the opposition is hogwash.  We don't exclusively sign with Reese.  We say & sign the word simultaneously.  In my opinion, we are merely providing our daughter with an alternative method of communication until she can fully rely on her speech.  Nothing wrong with that.

Retarded {31 for 21}

Retarded.  Say it out loud.  Some of you might not find it offensive - in fact, some of you might use the word on a regular basis.  "This belt is so retarded."  Or, "I turn into a retard when I don't have my morning coffee."  Not so bad, right?  Now say it out loud in reference to my daughter.  "So, how's the little retard today?"  Feels slightly different, doesn't it?  Heinous, to be exact.

I know what you're thinking - you would NEVER use the word to describe Reese or anyone else with a cognitive delay.  It doesn't matter.  It is a slur.  If you don't believe me, google "retarded" & tell me what you see.  You see faces that resemble Reese.  It is a slur that demeans a group of individuals that would never think to use a slur in retaliation.  It is a slur that demeans someone I love.

My blogging friend Courtney over at Pudge & Biggie says it best in this post.  Here's a clip:

I don't use the word "nigger".  I don't hear it very often.  If I do hear it, I am physically repulsed by the sound of the word and I'm stunned at having been subjected to it at all.

My repulsion isn't because I have children who will find themselves susceptible to that word in the future.  It isn't because I have family members whose color of shin would make them easy victims of the term.

I am disgusted at hearing the word "nigger" because I am horrified at the prospect of living in a society that embraces that word or the people who use it.  I know the principles behind that word and its induction into common slang.  I know that word's intention.

I don't avoid "nigger" because it might hurt my feelings if it's used.

I don't avoid "nigger" because it might hurt someone immediately close to me that I love.

I avoid "nigger" because my world is better than that word and so is every person living in it.  If I allow that word to exist, then I allow the principles BEHIND that word to exist.  And I am so committed to extinguishing those uneducated beliefs and their potential influence on the world around me that I will physically rise up against that word to ensure it is immediately snuffed out.

The same HAS to happen with the word "retard".  Because, at some point, it is very probable that I will be entrusting my children to this world.  And, if there is room for that word in this world, there is no room for them.

You can do your part.  You can take that word out of your daily use.  You can call others out who are still using it, lighthearted or not.  You can demand higher standards from your elected officials, celebrities, teachers and peers.

Ready the world for individuals with differing levels of abilities and you will sweeten the world you live in.  Not only because of the prejudice that is suddenly gone from it...but because of the individuals that are suddenly included in it.

Ann Coulter has recently made headlines with her frequent & flippant use of the word.

“Been busy, but is Obama STILL talking about that video? I had no idea how crucial the retarded vote is in this election.”

"I highly approve of Romney's decision to be kind and gentle to the retard."

Coulter also used the word in a Tweet where she said that if Obama is "'the smartest guy in the room' it must be one retarded room.'"

Another blogging colleague, Dan Niblock over at Down with Oz, wrote an impassioned piece for TODAY Moms in response to the above tweets & demanded an apology from the right wing pundit.

Instead of an apology, she responded with this, "the only people who will be offended are too retarded to understand it."

I realize my "R" post is rather delinquent & should've been published days ago, but it was sitting unfinished in my Drafts folder.  Unfortunately I knew we hadn't heard the last from Ann Coulter but I was waiting, praying, for a member of the opposition to make headlines.  And my prayer was answered in the form of John Franklin Stephens, a Special Olympics athlete & global messenger who also happens to have Down syndrome.  His open letter to Coulter is spreading like wildfire & I couldn't have asked for a more eloquent, more thought-provoking rebuttal to her vile remarks.

Dear Ann Coulter,

Come on Ms. Coulter, you aren't dumb and you aren't shallow. So why are you continually using a word like the R-word as an insult?
I'm a 30 year old man with Down syndrome who has struggled with the public's perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night.
I thought first of asking whether you meant to describe the President as someone who was bullied as a child by people like you, but rose above it to find a way to succeed in life as many of my fellow Special Olympians have.
Then I wondered if you meant to describe him as someone who has to struggle to be thoughtful about everything he says, as everyone else races from one snarkey sound bite to the next.
Finally, I wondered if you meant to degrade him as someone who is likely to receive bad health care, live in low grade housing with very little income and still manages to see life as a wonderful gift.
Because, Ms. Coulter, that is who we are - and much, much more.
After I saw your tweet, I realized you just wanted to belittle the President by linking him to people like me. You assumed that people would understand and accept that being linked to someone like me is an insult and you assumed you could get away with it and still appear on TV.
I have to wonder if you considered other hateful words but recoiled from the backlash.
Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.
No one overcomes more than we do and still loves life so much.
Come join us someday at Special Olympics. See if you can walk away with your heart unchanged.

A friend you haven't made yet,

John Franklin Stephens
Global Messenger
Special Olympics Virginia

Can I get an AMEN??!!??

Wordless Wednesday {31 for 21}

Reese debunking the myth that kids with Down syndrome are always happy...

 

But thankfully, these moments are few & far between.  Instead, we are normally subjected to this...

 



This happy AFTER a flu shot

 

I know, our lives are so rough.









Queen {31 for 21}

Kansas City has been in the news recently.  Not because of our stellar professional sports teams (sorry Sporting KC, you guys are pretty darn good), but because of a welcome trend spreading throughout a few high schools around the city.

The trend began with Allyssa Brubeck.  Allyssa is a senior at Park Hill South High School, a varsity cheerleader & a well-liked member of the student body who was elected Homecoming Queen on September 14th.  Oh yeah, Allyssa has Down syndrome.



The Kansas City Star pounced on this story & I've seen versions circulating across the nation & even internationally.  Here's a little excerpt:

By the time she heard the public address announcer call her name, it may be that the only person surprised was Allyssa Brubeck herself.
So there she was last Friday night, the new homecoming queen, a 19-year-old with Down syndrome, jumping and jumping under the football stadium lights as the full crowd from Park Hill South High School cheered and cried.
“Everyone in the stands was crying,” said 18-year-old classmate Leah Smith. “Everyone loves her.”
And perhaps the best part of the whole experience, say some of the adults who watched it unfold, is that all those high school teenagers behind the Allyssa-for-Homecoming-Queen phenomenon don’t seem to understand what all the outside attention is about.
They certainly understood Allyssa’s popularity in the school she has attended all four years. Always smiling. Always hugging. -courtesy of KansasCity.com

You know what I like best about this story?  It isn't the part about the crazed chanting of "Allyssa, Allyssa" as she entered the stadium or the tears being shed by men & women alike in the stands.  It isn't the poignant memory shared by Allyssa's friend, Leah.  Leah remembered her first year of cheerleading, and Leah was trembling on a cold night without ear muffs or gloves. Allyssa cupped her gloved hands around Leah’s ears, and offered Leah her scarf.

My favorite part of this story is that Allyssa's fellow classmates don't think it's newsworthy.  Why would a story about a Homecoming Queen with Down syndrome make headlines?  To them, Allyssa is just part of the gang.

And lately it seems like the majority of kids with Down syndrome are just part of the gang.  Ask Sam Charpentier, the senior football player at St. James Academy who was elected Homecoming King just a few weeks ago. 

Kathleen Baldwin and Sam Charpentier were homecoming queen and king at St. James Academy.

Sam is known for high-fiving everyone he meets, remembering each person’s name and asking about details in their lives.
“If you’ve ever walked down the hall with Sam Charpentier … the meet and greet never ends,” said Assistant Principal Jodie Maddox. “What we have gained from his contribution and gifts and talents — it’s immeasurable.”
At the homecoming assembly, he received a standing ovation from the entire school before he joined the other homecoming candidates in a dance routine. -courtesy of JoCo913.com

Read more here: http://joco913.com/news/for-homecoming-king-st-james-academy-truly-is-home/#storylink=cpy

And that gang also seems to include Caitlin Soder, an outgoing Blue Valley Northwest senior who is following in the footsteps of Allyssa & Sam.

Caitlin Soder was on the field with her mother and her grandfather when crowned Homecoming Queen

Read more here: http://joco913.com/news/homecoming-votes-reflect-a-new-era/#storylink=cpy

At Northwest, Caitlin has been known as a rabid Justin Bieber fan and a student government representative, Northwest Principal Amy Murphy said.
Her mother said classmates have always treated Caitlin like a typical teenager.
“If you had told me 18 years ago when Caitlin was born that she would be homecoming queen of her high school I would have never believed you,” Aidan Soder said.
“We’ve been preaching inclusiveness for how many years now and we’re the ones having trouble catching up, but the kids themselves, the high schoolers, they’re leading the charge,” she said.
At a recent homecoming assembly, students cheered wildly when Caitlin’s name was read.
“I looked at my rough, tough athletic director and the tears (were) just rolling down his face,” Murphy said. -courtesy of JoCo913.com

I realize Kansas City isn't the only progressive place in the nation whose youth celebrate kids of all abilities.  It's a wonderful phenomenon spreading far & wide.  And according to our very own Amy Allison, executive director of our beloved DSG, "school systems have come a long way over the past generation in including children with disabilities in their general classrooms and programs.  They’re growing up together.  The fear and intolerance of the past are falling away, and disabilities among classmates are negligible to kids.  They see the challenges they face, but they see they are happy and they want to help.”

Read more here: http://joco913.com/news/homecoming-votes-reflect-a-new-era/#storylink=cpy

I know a sparkling tiara & a shiny crown do not symbolize a person's worth.  They don't necessarily speak to a person's character or their contribution to society.  But to a parent of a child with Ds who immediately thought about "dance recitals & birthday parties" when receiving her daughter's diagnosis, I think they symbolize acceptance.  And inclusion.  And an amazingly bright future where their peers will see Reese for Reese, and Brooks for Brooks, & they will both just be part of the gang.

People First Language {31 for 21}

According to Wikipedia, my go-to site for all things factual & informative, People First Language is "a form of linguistic prescriptivism in English, aiming to avoid perceived and subconscious dehumanization when discussing people with disabilities, as such forming an aspect of disability etiquette."

Seriously Wikipedia?  Did that read like a foreign language to anyone else?  I much prefer Kathie Snow's definition, "Remember:  a disability descriptor is simply a medical diagnosis;  People First Language respectfully puts the person before the disability."

The concept is actually quite simple.  Always refer to the person first & the disability second.  For example, say "he has Down syndrome" rather than "Down's baby".  Or "she has autism" instead of "autistic child".

As a parent of a child with a disability, I support this movement.  I can say with 100% certainty that I've not used the term "Down's baby" since Reese came along.

That being said, will I bite your head off if you use the wrong terminology around me?  Absolutely not.  Will I even gently correct you if you say "Down's kid" or "Down syndrome child"?  My guess is no.  And for anyone from the Ds community that is silently (or not so silently) chastising me, the reason is very simple.  I don't want my friends or family or strangers in the community to avoid talking about Reese because they're afraid they might inadvertently say the wrong thing.  I don't want them engaging in mental gymnastics searching for the correct terminology every time they speak.  I want them to talk openly & candidly about Reese without fear of being reprimanded, especially if that will allow the world to fully soak up her awesomeness.

I'm not saying I won't step up to the plate for my daughter.  I have kindly asked a physician to refer to Reese as "a baby with Down syndrome" rather than "she's Down's" during one of her many consultations.  In my opinion, medical professionals & educators who serve more than a handful of kids with disabilities should be aware of the movement.  And I will continue to write posts that will hopefully educate & advocate for all individuals with Ds.

This topic was briefly mentioned in the Just the Facts post and my dear friend & pediatric nurse immediately texted me with an apology.  "So...I just read your post for the day & I feel sick.  I never thought about it until now that I always say "a Down's kiddo" instead of acknowledging the kiddo first.  It's terrible & I'm so sorry.  I will definitely be more aware from here on out." 

Although my intent was never to make anyone feel bad (this particular friend absolutely adores Reese), my friend is now more aware.  And just yesterday we were talking about her day at work when she said, "one of my favorite kiddos came in today, a little boy with Down syndrome."  Internally I smiled a crooked smile & thought "we have another convert!"  Great use of People First Language, Linds.  Thanks for unconsciously advocating for our girl just with your simple choice of words.
 

Observer {31 for 21}

FYI, this is purely an informational post.  No tears, I promise!

I've said it multiple times in previous posts, but Ben & I knew NOTHING about Ds before Reese was born.  We had no clue about the potential health problems or motor delays or speech issues.  So when I first started researching, needless to say I was a little overwhelmed.  But I found once you find the right resources, the information is very manageable.

And regarding motor issues, we found the right resource in the book Gross Motor Skills in Children with Down Syndrome.   I'll admit, this is not a book I would take on vacation but it explains the issues Reese may likely face as she progresses through her motor milestones.

Obstacles to Gross Motor Development:

1.  Hypotonia, a.k.a. low muscle tone:  Another term used to describe hypotonia is "floppy". I don't really love this term, but this is the word the neonatologist used when describing Reese's overall tone.  I guess it paints a better picture.

 A typical baby is normally more "tucked in" - this was one of the first red flags our nurse noticed when she started suspecting Ds

 

2.  Increased Flexiblity in Joints:  The ligaments holding Reese's bones together have more     slack than usual.  The following pose is one of her favorites.

 

No one call DFS please - she normally does not sit on counters unsupervised

 

3.  Short Arms & Legs:  Kids with Ds typically have short arms & legs relative to the length of their trunks.  This can make sitting & climbing a challenge.  I guess I haven't really noticed this with Reese - she is just really tiny overall. 

 

 I know you've seen this picture before but it best conveys Reese's petiteness.  Her best bud on the left is 7 months younger than Reese & weighed a whopping 4 pounds, 12 ounces at birth.  Now he and his twin brother look like giants next to our girl. 

 

The information I've found most helpful from this book is understanding Reese's temperament & how it relates to mobility.  Kids with Ds usually fall into two basic categories of temperament, Motor Driven & Observer.  Reese is a classic Observer, like to a tee.  For those that know Reese, tell me if this does not hit the nail on the head.  The following info is copied directly from Gross Motor Skills in Children with Down Syndrome.

 

Observers:

1. like to stay in one position and are content to watch, socialize, and play with toys that are available;  they need to have a reason to move;
2. are cautious, careful, and easily frightend by new movements and positions;
3. love to be held and tolerate it for long periods of time;
4. prefer to move at a slower rate so they can feel balanced and in control;
5. love stationary positions like sitting and standing;
6. initially resist crawling, creeping, moving in and out of positions and walking.                       

Ding, Ding, Ding!!!!  What does this mean for Reese?  She will learn to crawl & pull to stand & cruise & walk & climb stairs just like any other typical kid, she will just do so on her own time.  In the meantime, we are able to still enjoy a house free of baby gates. 

 



Wordless Wednesday {31 for 21}

Our first of many trips to Carolyn's Pumpkin Patch this season...

 

 Ben rockin' the Baby Bjorn

 Can't get enough of this face

 Reese & 2 of her best pals clearly enjoying the day

 Not missing a thing

 

Our second trip was a little more rainy & a little more cold but the company was spectacular...



 Goats sport the coolest pupils

 Taking refuge from the rain & double fisting her lunch

 These two created 20 +1 ways to enjoy gravel 

While this one tried ingesting it

 What better way to end the day than some puddle jumping

And Ben wonders why the laundry pile is neverending