ONE21: A Community United Will Achieve Great Things

The latest from the ONE21 initiative - please share on blogs, on FB and by word of mouth - the biobank is close, within our grasp...

ONE21 is a new community-wide initiative of parents, researchers, and advocates for Down syndrome coming together for a common goal:  to give DS research the support -- and voice -- that it so urgently needs.

To help advance DS research to the next level, ONE21 seeks to fund the development of a dedicated and centralized DS biobank that will be open to all DS researchers, regardless of institutional affiliation.

What is a biobank? It's a large medical-grade refrigeration unit used to store high-quality samples of blood, tissue, DNA, and other specimens researchers need to build a more thorough understanding of DS.

Biobanks have been in use since the late 1990's, and are already commonplace in other research areas, including autism, cystic fibrosis, Duchenne muscular dystrophy, and psoriasis.

A biobank will go a long way toward advancing the science of DS faster, making therapies and best practices available sooner, so our loved ones with DS can live longer, healthier, and more vibrant lives.

What You Can Do Right Now
The ONE21 campaign to fund a dedicated DS biobank will roll out in the coming weeks. Until then, here are two easy steps you can take today to help:

1. Spread Awareness: the biggest barrier to achieving more for our children with DS through research is the lack of knowledge. Talk with other parents and advocates about the need for  a dedicated DS biobank - a critical tool that will advance research in speech and communications, congenital heart defects, childhood leukemia, early cognitive decline, thyroid issues, and others. Without a biobank, progress for our loved ones with DS will remain slow.
    
2. Invite others to join ONE21: The ONE21 campaign is about what can be achieved today a community working together for the greater good. Ask your friends, families and others to learn more -- and lend their voices to the cause -- by signing up at ONE21.org.

 

Dr. Alberto Costa is largely credited for publishing the first study to show a drug could normalize the growth and survival of new brain cells essential for memory and spatial navigation in a mouse model for Down syndrome (DS). Since his daughter was born with DS 18 years ago, Dr. Costa has dedicated his research to the study of DS. He is also credited for completing one of the first randomized human clinical trials of a DS cognition drug called memantine, which is already FDA-approved for the treatment of Alzheimer’s disease.

Dr. Costa was recently recruited by Case Western Reserve University to continue his groundbreaking work and, among many important projects he is involved with, he is collaborating with a leading pharmaceutical company to see if a drug in development, named RG1662, can reverse the effects of the GABA neurotransmitter, which inhibits brain activity. This seems to be one of the mechanisms responsible for the memory and learning problems in people with DS.

We asked Dr. Costa his views on the state of DS research today and what is needed to advance further, faster.

Blog Hop - 3 on the 21st: One Truth, One Tip, One Fabbo Pic :-)

Celebrating the 21st day of August, finding myself all too close to the deadline set for the creation of the DSANV calendars for 2014 and not having done a damn thing with them (I know how I'll be spending the next few weeks, slacker that I am...), enjoying the unseasonably cool break in the traditionally-soupy and sweltering August weather, I have joined the Blog Hop on Meriah's blog.  Always happy to have a quick, easy writing prompt, one that doesn't require too many brain cells (we all know I certainly don't have those to spare these days!), here I am.

Last month I shared One Truth, One Tip and One Photo.  This month I will do the same, albeit with different points being made, lest you get bored with reading the same old same old.  If you would like to join along on the hop, here are the rules, and the link is at the bottom of my page:

One Truth (about Ds or our lives with Ds)
One Tip (information on something related to Ds/raising a child with Ds/or just parenting in general)
One Photo (or Fabbo pic, as I prefer to call it)

One Truth
Go ahead and flame me for this, all you anti-stereotype people, but stubbornness is NOT a stereotype for our kids with Ds.  It's for REAL (thanks for empowering me to say it loud and proud, Meriah!).  Sure, you can say all you want that your typical children are stubborn, too, and why pigeonhole a trait on people with Ds that is shared by everyone else, but NO, it's DIFFERENT.  I don't have typical children, but you can bet your life that Sammi's classmates don't behave like she does on a regular basis.  She's a mule.  And has her own agenda much of the time, meeting my agenda with as much resistance and clever avoidance/manipulation as she can muster.  It's interesting to watch, but wholly frustrating as she digs in her heels, flops and drops, fake-cries, crosses her arms and pouts.  Re-direction usually works, but just a quick tip from our ABA-therapy-trained friends, do not bribe!!!!  That surely spells disaster for the next time...

One Tip
I'm going to go against Meriah's Truth today with my own take on therapy, and make it into a Tip.  She states that the necessity of therapy should be questioned before it's purchased and swallowed.  While I love Meriah dearly, I have my own thoughts on this.  When Samantha was born, my mother told me about a guy she knew who had a daughter with Down syndrome who was determined to do everything he could for his daughter and for her future and threw every type of therapy at her he could.  That image stuck in my mind in Sammi's early weeks.  Being lucky enough to have been living in a county that offered therapy freely and in copious amounts from the word Go, it was easy for us.  We didn't even have to ask, and Samantha was given Physical Therapy from just a few weeks old and Speech Therapy within about a month and a half from a therapist who embraced oral-motor therapy (btw, I have no personal attachment to the link there, I just did a quick Google search to find some sort of explanation for you).  We were offered one hour per week each, and then added in Occupational Therapy at about 15 months, when Samantha's PT started working with her full-time on walking.  Sammi aged out of early intervention at 2 years old when she entered public preschool, as she received similar services there.  Not long afterwards, we added in private PT, ST and OT to supplement what she was receiving in school. 

My thought on therapy is DO IT.  Do as much as you can, as often as you can, without burning yourselves out.  If you and your child don't mesh with a therapist, request another one - sometimes personalities can clash, and the results can be counter-productive.  If you and your child are burned out, stop with the formal therapy and pick up the Woodbine House books and do it yourself.  I feel like there is no limit on what we can provide our children to help them succeed, there is no limit on providing them the tools for success.  Therapy is critical, in my opinion.  If your county tells you they won't cover your child's Speech Therapy until the child is 2 or 3 years old, the age at which they should already be talking, push for earlier or go private.  Strengthening the muscles in the face and mouth to help facilitate speech BEFORE speech comes is a no-brainer.

Okay, stepping down.

Fabbo Pic Time!
Um, I can't remember if I posted this one yet or not...  I've been slacking a bit on photo-taking and may be repeating myself.  But I love it all the same.  (Incidentally, the Fabbo part refers to the beautiful child, not the old chick in the front...) 

    

When Worlds Collide

I take a lot of liberties on this blog, dramatic license, if you will.  Maybe I shouldn't tell you that, though, so as not to spoil your view of my views...  But if I'm being honest, I like the conversation that sometimes gets sparked through my own worries and concerns, observations and opinions, no matter how overblown slightly exaggerated they may be.  They're of my doing.  My opinion, my discussions, and I totally appreciate the differences of opinion that come through.  I will say, however, that I appreciate the agreements even more, though...  I mean, who doesn't?  But I have learned a lot through those differences. 

Take, for example (and I use this as an example in conversation often - it was a real eye-opener), my post about my anxiety over Samantha's use of public restrooms.  I always felt like I needed to carry a veritable hazmat suit around in my purse for her before I'd let her actually sit on one of those toilets, before I'd let even one shred of her clothing touch even one square inch of the bowl, before I'd let her even reach for the flusher.  A reader with Crohn's disease commented, humbled me, made me think again.  I then wrote this post about my change of heart.  I really learned from that initial discussion, and have really relaxed when it comes to public restrooms, pushed aside my fear in order to enable my daughter's independence.

I'm a bit of a chicken when it comes to real debate of issues, though.  I've been known on Facebook from time to time to share an article or start a topic based on something in the news that ignites a fire in the argumentative, stand-on-your-soapbox, fight-the-point-at-all-cost nature of so many people, then bow out of the conversation and hide under a rock until it dies down, cowering at every glancing blow, cringing at every direct hit. 

I'm sure it doesn't go un-noticed, either. 

I get really anxious when my IRL friends, the people who know me, who I may have even grown up with, or who I know I will need to face on a regular basis at community events or at school (never at work, though - I don't FB-friend those people!), start to argue with my online "friends."  The discussions go from urgent to heated to angry.  I worry that people will judge me by the opinions of the company I keep on Facebook.  It's silly, really.  And I value each of my "friends" there, regardless of their opinions.  I know that in order to accept humans and human nature, we're bound to come across differences of opinion.  Granted, if someone were to come along and say it's okay to rape/pillage/murder/rob/inserthorriblecrimehere, I'd have to unfriend them. 

Uh, or call the cops...

But so far, I guess I've been lucky not to have to resort to that drastic measure.

Where was I?

Oh, right...my anxiety born when worlds collide.

Yep.  That's when I usually go into hiding.  It's actually funny in a rather horrible, sick sort of way when I've started a topic like that in the morning before work.  I'll comment on the back-and-forth a few times, then back out silently out when things start to get sticky.  My phone will buzz non-stop all day at work as more and more people join the fray, hoping I won't get called out, hoping World War III isn't about to break out, hoping my IRL friends will forgive me.  I check in from time to time, usually astounded that somehow 147 comments have unfurled that I'll need to read at some point, especially since at least one person has tagged me for comment along the way.

Thankfully that doesn't happen often.  We all know the hot-trigger topics - abortion, gun control and politics are usually the top three.  Seeing as I know absolutely nothing about politics, that topic never rears its ugly head on my wall.  I won't even pretend to know anything about politics.

I'm not writing this post because I'm getting ready to start a controversy on my blog.  I'm actually not writing this post for any reason whatsoever, other than it's just something I was thinking about today after having posted an article on Facebook about 3 teenagers killing a random passer-by in the mid-west.  It was a horrible article, and sparked a quick, red-hot debate on gun control.  I have my own opinions.  I am not afraid to state them.  I am afraid of people arguing with each other, getting mad at each other, getting mad at me for them.  I know I should stick by my guns (haha, no pun intended!), hold my ground, stay present in the "conversation," but, as usual, I cave and disappear. 

Facebook is a funny thing.  Blogs, while similar in their ability to present opinions, to spark conversation and fuel debate, are different.  They reach a smaller audience, a much better-defined audience of people who probably are of more like-mind.  I think with a blog it's also easier to make my point, state my feelings, give a well-rounded opinion all at once, in one place, without the fracturing of comment after comment sparked on Facebook.  I say what I'm going to say, and anyone who comments will not be part of an active, live debate. 

Okay, I've said what I'm going to say today. 

Now back to your regularly-scheduled silence.

Blue Ridge Beauty

Sometimes my job is so rough.  Like, tragically difficult.  Like, SO hard that it just pains me to have to do some of the extraneous aspects of it, like visiting museums to scout for holiday party locations, doing tastings with the caterer to figure out menus, spending a weekend at a resort just to make sure it's appropriate (and fun enough) for a company getaway next spring...

 

Yeah, it's tough. 

 

Steve, Samantha and I, along with a colleague and her husband, did that messy resort thing two weekends ago.  Oh, yes, there was plenty of arm-twisting and cajoling that went on to get us there...

 

...not...

 

So we drive to Wintergreen Resort, in the Blue Ridge mountains, about 3 hours from home, through Virginia wine country, past Civil war battlefields, rolling hills and quaint, sleepy towns full of ancient architecture and history. 

 

And it was beautiful.

 

Samantha woke at 6am in our 2-bedroom condo (conveniently located at the top of the chairlift), in perfect time for me to catch a glimpse of the sun rising over the mountains.  Still in the sweats I'd slept in, I grabbed a hoodie, my black All-Stars and my camera, and rushed out to see what I could see before the purple and orange world coming into view before me brightened back to the blue that the range is named for.

 

Please note, due to the traumatic nature of the job I had to do, I did not include photos of me zip-lining, tubing, bungee-trampolining or doing any of the other terribly joyous tedious activities that I suspect will be perfect horrible for our employees and their families next year.  ::wink::  

 

 

 

 

 

On the way back from breakfast a while later, Samantha, under-dressed for the chill in the morning air, borrowed my sweater while we walked, slope-side.

 

A popular locale for weddings, this one was set up for later in the afternoon.  I can think of no more perfect place for the ceremony.  

 

Butterflies were everywhere.  Even on the beach of the lake at the bottom of the mountain.

Did I mention how much I love my job??

ONE21 - What it's Not

I've copied and pasted my friend, TUC's blog post from today.  She says it perfectly.  There is so much riding on this campaign, and I urge you and all of your friends to visit the ONE21 website, to share with your friends and family members, to get people involved.  Big things are moving for our loved ones with Down syndrome...

Here's her post:
_________________________________________________________


You may have heard a bit about ONE21 recently, perhaps at the NDSC convention, or maybe here on this blog, or on Facebook and are wondering what it is. Before I tell you that, let me say what it is not.

ONE21 is not a research project and does not support any particular research project or type of Down syndrome-related research over another.

ONE21 is not an organization. While ONE21 was initiated by Down Syndrome Achieves, it is more of a campaign, or a group effort to do something positive for people with Down syndrome. The ONE21 website is a .org rather than a .com because ONE21 is a charitable project.

ONE21 is not a parent group. The people who support ONE21 are made up of advocates, parents, and researchers. And it is our hope to engage the entire community {Ahem, friends without children with Ds, that's you :-) }

ONE21 is not interested in a cure for Ds. ONE21 firmly believes in the value of people with Down syndrome and wants the best for them. We believe research can be a gateway to helping our loved ones with Ds live longer, healthier and more vibrant lives.

ONE21 is not a competitor to any Ds organization. What ONE21 aims to accomplish will be shared by all.

OK, so if it is not all that, then what is it about?

ONE21 is a community-wide initiative with community-wide benefits. We are bringing activism into Ds research and stepping up to provide researchers nationwide with the tools they need to develop breakthrough therapies and best practices that will help our families now.

Beginning August 21st, you will have the opportunity to make a tangible and lasting positive impact on the quality of life for all people with Ds by making a commitment to strengthen research capabilities for Ds researchers nationwide. Visit ONE21.org for more information.

Saving Lives - Urgent Need Today!

A quick post this morning, asking you to help a family in need with a 2-day deadline...  You know I don't usually do this kind of thing, but I can vouch for these folks...

I first met Kelly and Kyle Dirkes about a year and a half ago at the home of a friend - they were just a few short weeks away from adopting their first child, Charlotte, a little girl with Down syndrome, from an orphanage in Russia.  Their first child.  With Down syndrome.  4 years old, in danger of being turned over to a mental institution on her 5th birthday.

I met them for the 2nd time at the airport, on their return from Russia, beautiful little Charlotte in their arms, ready to take America by storm.  And we've been friends ever since, little Charlotte and Samantha fast friends as well.

Kelly and Kyle have incredibly generous hearts, and have made a journey for a calling that most people couldn't even begin to contemplate.  And they're doing it again. 

Another child, a little girl they will call Louisa, in a baby home in Eastern Europe, lies in her crib, waiting for the mother and father she doesn't know even exist.  Waiting for the big sister she doesn't yet know.  And Kelly and Kyle are traveling next week to go and meet her, to go to court, to be given the parental rights to bring her home. 

And listen, folks, this endeavor ain't cheap.  They've almost got what they need, but a critical piece of funding has fallen through in the 11th hour, and they need your help to seal the deal, $10,000 needed in the next two days to allow them to travel. 

And they're willing to do what it takes to get it, to get their baby girl. 

Just ripped off her header image of Charlotte and Louisa - I'm pretty sure she won't mind...

Kelly has decided to put her engagement ring up for grabs.  One of the very few pieces of jewelry she wears, and certainly the most sentimental.  For every $20.00 an individual donates, they will have a chance to win that ring.  And, to be honest, I'm hoping that whomever wins this ring will do the right thing and let Kelly keep it...but that's up to you...

There's a link at the top of my right sidebar to donate.  You can also visit  http://projecthopeful.org/matched-families-2/ (scroll all the way to the bottom to find their family) or  http://reecesrainbow.org/?s=Stori.

Please share this post, on Twitter, Facebook, on your blogs, wherever.  (E-mail me if you need codes or html for the post.)  No donation is too small - it all adds up!!! 

The Great Miralax Debate Part II: Follow Up

Back in February, I posted this post about our switch from 7 highly successful years of Samantha taking a teaspoon of Miralax every day.  Thankfully, she didn't have too large a dose, but I also have to remember she was just a baby when we started.  The evidence just keeps coming about the possible negative and/or catastrophic side effects of the popular over-the-counter drug which is used as a remedy for constipation.  Many of us have had the experience of doctors telling us repeatedly that it was completely safe, not harmful in the leas,t for long-term use by our kids. 

And we believed them.

And now, I feel like we could be sitting on a time bomb.

How much damage have we really done?  Is there anything moving through her system that will create long-lasting issues for her in the future?  She seems perfectly fine.  But what's really going on?

We really don't know.

And that scares the crap out of me.

Our children trust us to keep them well, to keep them safe from harm, to protect them.  We, in turn, trust their doctors to tell us the truth, to give us the cures, to give us the power to keep our children well.

Do I blame the doctors?  No, not really.  They told us what they thought to be accurate information.

And now I'm frightened. 

For seven years we believed it, to afraid of the negative consequences of not taking it. 

But I can't dwell on that.  I have written this post today to give you an update on our alternative therapy.  Back in February we started giving Samantha Fruit-Eze, a natural supplement.  So natural, in fact, that its only ingredients are prunes, raisins, dates and prune juice.

That's it. 

To start with, Sammi had some cramping, some sudden needs to run for the bathroom, some diarrhea.   Not to mention, she really, really didn't like the taste of the stuff.

Hell, she still doesn't.  But she dutifully takes a spoonful of it daily before breakfast, coughing and gagging over it in a dramatic display worthy of an Oscar nod.  Every. Day.

After the first week or two of the cramping, etc., those side effects disappeared, and she's been regular ever since.

We replaced her usual Yoplait with Activia for snacks a few times a week as an added precaution, and that may also be helping things.

Whew!

So, if you're interested in finding an alternate to the highly-questionable Miralax, visit Fruit-Eze to order.  It's $26.00 for a large tub that lasts a couple of months (depending on usage), the shipping charge is free for regular delivery, and the peace of mind is PRICELESS. 

I Just Have a Kid

Independence is a sneaky thing. 

For so long you dote and mind, and watch oh-so-carefully, you hold hands and cut food into tiny pieces so tender mouths don't burn, you carry and lift, find and recover, read, build, dress and put away. 

And then one day...when you least expect it...you realize that don't really have to.

One day, when you sit still, reading your own book, sitting in your own room, by yourself, you listen...

And you hear...

Your child, in another room, perhaps on another floor of the house, reading their own book, making their own bed (albeit not very well...), turning on and setting up the TV to their own shows, brushing their own teeth...  Things that all crept up on you so gradually that you almost (*gasp!*) took them for granted, something you swore you'd never do, never be able to do.  Take things for granted. 

This morning I awoke before the child, who had earlier crept into my bed at the crack of dawn to curl up and fall back asleep, snuggled close to me.  Carefully, so as not to wake her, I crawled out of bed, went downstairs, made my coffee and a bowl of cereal, and sat on the couch to eat and watch the news on TV.  Hearing no footsteps upstairs, but knowing she could have come down and joined me if she'd wanted, I ate leisurely, then cleaned up, then returned upstairs to get her up and ready for summer school.  She was awake, sitting in my bed, under the covers, watching one of her shows on DVR, after having used the remote control to scroll through the myriad of options to find the program and episode she wanted. 

I pulled an outfit from her drawer that I thought would be cute today.  Tossing it at her, I said, "Hey, girlie, please get dressed then come downstairs for breakfast."  Her response?  "In a minute.  I'm busy watching TV..."  I reminded her of what I needed her to do, then went downstairs on my own, knowing...scratch that...hoping that she would come along shortly.  Dressed. 

And, fully dressed, she did.

After she ate her own breakfast that I set on the table in front of her, she returned upstairs, to the bathroom, where I had set out her toothbrush with a dab of toothpaste on it, and a washcloth.  While I went to my own room to get dressed for work, she used the toilet on her own, washed her own hands, brushed her own teeth, washed her own face, and, beaming, came to me for inspection.  Beautiful, I said, smiling back and kissing her lightly on the forehead.

It's not always seamless, not without its issues, setbacks and resistances, not perfect, but it's an incredible thing.  And it wasn't until this morning that I truly stopped to marvel at its mere existence in my life.  The independence.  The ability.  The ordinariness of the day-to-day. 

I don't have a kid with a disability.

I just have a kid.