Monday, October 31, 2011

Day 31: The End

As the month of October draws to a close, I am both exhausted and exhilarated.  What a fun ride this 31 for 21 challenge has been!  I remember it being a blast last year as well, and while I knew it would be a stretch to commit to, I made it!!  I have really enjoyed reading everyone else's posts this month (when I could), and apologize for all of those I missed.  I think the challenge was less in the writing of my posts than it was in the attempt to read the posts of others.  Time was in great demand, both personally and professionally.

Tonight is Halloween, and as with every holiday/notabledaythatoccursannually, I look forward each year to Samantha's increased understanding and participation.  She's excited to don her pirate's costume and greet each neighbor with an "Arrrrrgh, matey" as she robs them of their  candy (to be more specific, I will be instructing her to select Reece's, Milky Ways and Twix).  Candy she'll only just get a taste of, as she so rarely has it, and we'd like to keep it that way. 

Yes, people, we are sending our child out to do our dirty work for us.

Hopefully I'll have pictures up tomorrow or Wednesday.

But until then, Happy Halloween, and even more importantly, Congratulations ALL on an awareness-filled month!

Sunday, October 30, 2011

Day 30: American Horror Story - A Brilliant, Rising Star

I know, I know, Day 30 is super-late.  It's 4pm, and I have been throwing a few random ideas around to write about, but I think I'll just focus briefly on a new show I've started watching - American Horror Story, airing on Wednesday nights on FX. 

For me to add yet another series into my sadly-excessive television-watching life is pretty bold, as even between seasons of some shows, the addiction that is reality-tv programming  rears its ugly head, sucking me in until I barely have time to scarf down dinner or use the bathroom or write a blog post or something...

So, my newest obsession is, in a word, amazing.  Scares the crap out of me.  Even just the opening credits alone, disjointed, jarring, creepy as all get-out, send shivers down my spine.  And yes, I'll admit it, I watch it through the spaces between my fingers as they're spread across my face, or in bed with the covers pulled up to my chin, hands at the ready to bring them up above my eyes.  Makes me feel like I'm 8 or 9 years old, sneakily staying up late on a Friday night to watch the horror series that aired on ABC in the late 70s (ooh, those were soooo good!  Anyone else remember them?).

One of the highlights of this fright-fest, besides the absolute joy of being scared, is a truly talented actress, one who keeps you riveted to the screen, both for her colorful character and for her creepiness.  Oh yeah, and she sports an extra chromosome. 

Jamie Brewer plays Addie, daughter of Jessica Lange's character.  American Horror Story appears to be her only film/tv credit, but I think we'll likely see more of her.  And I won't give anything away, but while it looks like she might not be back after last Wednesday night's episode, once again, I think it won't be the last we'll see of her here, either... 

When the series premiered, 4 weeks ago, the Down syndrome community on Facebook and other forums was buzzing about how poorly her character was treated by the others.  Really?  And the most disappointing thing about what people were saying was that most of the ones saying it hadn't even watched it, and were already vilifying it.  Addie's mother was of an era where a slightly less-PC term was used for people with Down syndrome.  And that doesn't make her any less of a loving mother.  Actually, she loves her so fiercely, she stifles her a bit to protect her and keep her the little girl she thinks she should be.  However, Addie is a very capable young woman who holds her own, even to the point where she's known to steal her mother's boyfriends.  In one episode Dylan McDermott calls her a "freak," but Connie Britton quickly steps in to berate him, saying, "Don't call her that!"  But in all honesty, her character certainly is pretty darn freaky

If you've missed any of the episodes, FX is airing the series so-far in a marathon this Monday night (Halloween, of course!) starting at 10pm.  If that's past your bedtime, get your DVR ready!

Below is a video showing a red-carpet interview with Jamie Brewer at the Premiere.  She is definitely a rising star!


Jamie Brewer Interview at "American Horror... by maximotv

Saturday, October 29, 2011

Day 29: Congressional Briefing on Down Syndrome Research

On Tuesday there was a Congressional briefing on Down syndrome research on Capitol Hill. I had wanted to listen to it streamed live, but due to some technical difficulties (not to mention the fact that I was too busy at work to even breathe), it was unavailable. I got the link to the video today, and must say, it was an excellent use of an hour and a half of my time. I learned an awful lot, and feel like there is just so much to look forward to in the lives of our children and, frankly, in the lives of everyone, with or without Down syndrome.  There were some very noteworthy speakers, whose names many of you may have heard of, including Dr. William Mobley, (UC San Diego Down Syndrome Center for Research & Treatment), Dr. Roger Reeves (Johns Hopkins University), Dr. Sally Shott (Cincinnati Children's Hospital Medical Center), and Madeleine Will (National Down Syndrome Society). 

Among the things I learned (some of which I had heard before, but never in quite as much detail, more fully fleshing out the concepts for me) were how research into some of the medical issues associated with Down syndrome will help researchers to find cures for the whole population, not just those with Ds.  How certain cancers are notably missing in most people with Down syndrome, while they will occur with alarming frequency in the general population, and how research on "trisomic" vs. "typical" mice has tied that lesser incidence to the presence of one particular gene. (cool, huh?)  How obstructive sleep apnea (OSA) really occurs (the MRI images shown were astounding!), and with what frequency it occurs in people with Ds.

I want to come clean and be honest here on that last point...I was about to publish a blog post about how I don't believe that all people with Down syndrome necessarily have to have a sleep study, and since Samantha has absolutely no symptoms we aren't pursuing it - well, I was set straight today.  Did you know that by age 4, 60% of children with Down syndrome have OSA?  And did you know that by age 9, that percentage jumps to 80%?  And that over the age of 12 (I think that's what they said, but without going back to the video I can't verify the exact age), that number is nearly 100%???  Well, I sure didn't.  Looks like we'll be getting Sammi a baseline study sometime soon...  100%?  Really?  I swear, this kid sleeps like a log, no snoring, no moving, no nothing.  I had no idea that it could/would change over time.  Crap.  It's like the thyroid thing - not if they'll get a thyroid issue, but when... (yeah, yeah, I know about 60% of you out there reading this are saying I told you so...  I acknowledge my bad.)

I'm just glad I never published that post...yeesh.

There were so many other things I learned from that briefing, but can't recall right now as I type.

Please have a look, and I hope you all get as much out of it as I did. 


Friday, October 28, 2011

Day 28: The Importance of Therapy for Children with Down Syndrome


I started this post back in September as I was lining up topics for 31 for 21, knowing that it was a topic that was important to me, and something I'm passionate about.  However, wanting to give it more time than I had, it just sat.  Coincidentally, my mother sent me an e-mail two days ago, saying that if I was in need of a topic to write about in these last few days of the month, I should write about how important therapy is early on for our kids, speech therapy in particular.  You know what they say about great minds...

Shortly after Samantha was born, my mother and I had a conversation about therapy.  She told me about someone she knew who had a child with Down syndrome.  She said the child, no longer a baby, was doing well, and that her friend (well, I'm not sure whether it was a friend or just someone she knew in passing) had been determined to do whatever was possible to help their child, starting at a young age.  I specifically remember my mother using the term, "throwing whatever they could" at the child (meaning therapies and opportunities) to help the child reach its (sorry, don't know if it was a boy or a girl) potential. 

My first thought was how will we be able to afford this? 

Let me address that issue of cost and affordability a bit later.  First, I just want to talk more about the title of this post by saying that therapies are crucial for our children, starting as soon as possible.  I'm not saying that people who have not pursued therapies or been offered therapies by their states/counties/municipalities have missed any sort of boat here, but I do just want to say how sad it is to hear, over and over again, that their states/counties/municipalities seem to think that therapies aren't important for new babies.  (I'm a firm believer that when they say this, they're actually just saying they don't want to pay for it.) 

The two therapies that are so valuable from birth are physical therapy (PT) and speech therapy (ST).  So many times parents are told that their children don't need either of those, ST in particular, until they're older.  Until they're at an age when they may be getting ready to walk.  Until they're at an age when they may be getting ready to talk.  Really?  They would honestly deny a child the tools needed to get them to that point?

Yep.

So for any of you who have been told that, denied services for your baby, please know that there is so much that needs to be done, so much that can be done from the very beginning, starting with oral motor therapy to strengthen the muscles of the mouth and tongue, exercises to build neck and core strength, coordination and attention span. 

I know we were fortunate to have been offered all of this right off the bat, each for an hour a week from our county's Early Intervention.  We were on a sliding scale fee, assisted by my health insurance.  When Samantha started school at 2 years, 3 months old, the therapies were given in-school, but because I had good health insurance, we retained her ST & PT privately as well, to supplement.  We didn't know at that point that Samantha was eligible for Medicaid, which would have picked up the cost of her therapy privately (with therapists that accept Medicaid, of course) anyway, if her pediatrician were to state that it was needed.  When she was 3, we discovered that Medicaid eligibility was based on Samantha's income, not ours, and we quickly signed her up and got her on a wait list for a therapy center nearby that accepted it.  She now has an hour of PT and an hour of ST privately each week, covered in-full by a combination of my health insurance and Medicaid.  She also receives PT, ST and OT (occupational therapy - another important one, but one that PTs will often work on during a baby's early months) each week at school.  The only thing I'd want to "throw at" her would be private OT, but Samantha's fine motor skills are pretty strong, and I'm pleased with what she's been doing at school and working on with her school OT and resource teachers.

Even if you are not offered therapy from your state/county/municipality, even if your health insurance does not cover it, even if you cannot get Medicaid for your child, I ask that you still pursue therapy, even as provided by you, yourself.  Woodbine House publishing has some excellent books, including Gross Motor Skills for Children with Down Syndrome and Early Communicatgion Skills for Children with Down Syndrome.  Going hand-in-hand with my post from yesterday, remember that you, as the parent, are ultimately responsible for maintaining your child's growth and development.  Remember that you, as the parent, know your child best, and are the ultimate director of your child's growth and development, whether with therapists at school, privately, or at home.  Stand up and advocate for your children, hold your ground and provide valid, compelling reasons to argue against those that will tell you "no."  Fight for what your child needs, and be prepared to provide it yourself if necessary.

Thursday, October 27, 2011

Day 27: Believing In Yourselves (Revised)

In my brief and fleeting moment of blog-reading at work yesterday, hunched over my overflowing desk while scarfing down a slice of pizza for lunch left over from an earlier meeting (not mine), I came across some interesting , insightful information on We Can Do All Things.  It was reprinted from a forum by Dr. James MacDonald, and is about empowering parents to stay in control of their child's development, and to help to educate the professionals about their child.  It's quite good, and there are many parts of it that I think parents should bear in mind. 

Now before I post what he'd written, let me just say that I originally posted this (this is a revised version) thinking that Dr. MacDonald was a minister, and his website was pretty heavily religion-based.  Of course that kind of thing generally has me running in the opposite direction, pretty much as fast as my out-of-shape legs can carry me, but to be honest, there was nothing in this writing that referenced religion, nor did it imply faith in anyone but yourselves as parents of children with a disability or delay.  However, I, having looked at the wrong James MacDonald website (hehehehe), have now been set straight by Sandy, who'd posted it yesterday, and I see that the Dr. James MacDonald who wrote what's below is not the James MacDonald, minister.  LOL  The right Dr. MacDonald has a fantastic website called Communicating Partners which, I, now that I've looked at it, will now implore you to all take a look at, as it focuses on being parental partners with therapists, etc. for our children with Ds or Autism. 

Ah, that's what I get for doing a random web search, right?  But whew, I feel much better now.  :-)

I was initially blown away by it, but as I read it a little bit more closely, I became a bit concerned that it gave some negative blanket statements and implied that the professionals we have working with our children are, to put it simply, bad.  Which is defiinitely not always the case, and I'm a little worried that this could put some parents on the defensive with these important partners in their child's development, when there really still needs to be an element of trust.  But if you can look past those statements and implications, I loved that it puts power into the parents to be the primary teachers and guides through our children's lives.  We can't expect that our kids will learn everything from others.  And that, is most definitely true, and a very important lesson to remember.  Your thoughts?

Here's the post:

Believe in yourself more than professionals!

I say further that you need to do what evaluators only rarely do--and that is focus on what the child can do.

Professionals often seem to think that to justify their job they need
to identify all kinds of mistakes your child makes.

I claim that your child does not make mistakes, they are developmental growth steps.

Professionals would go much further with our children if they would take a developmental approach by identifying what the child can do and have him do more of that.

Stop putting yourself down because you have a child doing less than same-aged peers.

That does not make him wrong, and it does not make you wrong. How often do you feel wrong when someone accuses your child of being wrong???

Don't be blown away by negative evaluations any more than
if someone said you have the wrong kind of car, or dress or house.

Be proud of what you have done for yourself.  That will help your child be proud of what he can do. 

If he is not proud, he will do less and believe less in himself.

Realize your child is learning from you all the time and he is learning much more than what you say or try to teach him, he learns how to believe and think by watching you.

STOP BELIEVING PROFESSIONALS KNOW MORE THAN YOU DO ABOUT YOUR CHILD.

THEY DO NOT. 

In fact they cannot know who your child is and what he does and can do unless they watch him with you and get a thorough report on what he does at home.

Also, professionals are usually asking the wrong questions. 

They seldom know much about early development and what children need to do before they're in school.

Skills such as social play, imitation, turntaking, deliberate communication, initiating, responding, listening, and many others are seldom evaluated and yet they are the keys to learning and communicating. 

Realize that you often buy into a system that is keeping your child down.  Start seeing how and when you are doing that, such as when you push your child to do things he is not ready for, or making him avoid you and others by acting in ways he cannot try to do.

Be more focused on what your child can do and get him to do it more.  At the same time, focus on what you do when he is performing well - keep doing it.

Be sure he is your partner more than your student.

Begin to be convinced the your child is your responsibility much more than the 5-26 professional who will flit by him and see only pieces of his real development.

And ask yourself: WHOSE CHILD IS HE OR SHE ANYWAY?

We often act as though our children belong to the professionals and we give them away.  Please do not give your child to people who focus on the negative! 

Why do you think I have focused my 37 years of work on parents? They - you - are the answer.

Dr. J


Wednesday, October 26, 2011

Day 26: Remembering...Our First Ds Event

Below is a photo of Sammi at 6 months old (look at that RED hair!!!).  We were at our first Down Syndrome Association event, the December 2006 Holiday Party, and, like most people new to the larger, more universal Ds "family," we were a little bit shell-shocked.  But also comforted.  Here we were, in a huge room, a high school cafeteria, full to the brim with people we'd never met - children, teens and adults we were looking to for answers and inspiration.

I quickly sought out my Parent to Parent mentor and her family, as her daughter was much older than Samantha, a little girl in elementary school.  It felt good to know that there was someone there that I could connect with, at least initially, until we could settle in in the best way we knew how.    

The thing that struck me most that day was how kids acted like kids.  When a group of children, some with Down syndrome, some siblings without, gathered around Samantha to ooh and ahh over the baby, we realized that the differences were fewer than we had expected.  Nowhere were the bowl cuts of old (yes, I'm still going on about that - it was a big deal for me!!), people were happy and enjoying themselves, and we saw people with a range of abilities, just like in any "typical" population.  We were glad we went.

We ended up really enjoying ourselves, and Samantha got her very first visit to Santa's lap (she couldn't get enough of his beard!), but I know that those first events aren't so easy for everyone.  Some friends later revealed to us that they, too, had gone to that holiday party, but after pulling into the parking lot in front of the school, balked and returned home without ever stepping foot over the threshold.  And that's okay.  It happens.  You're ready when you're ready


That darned bib (and about 100 others in our arsenal) was pretty much a constant fashion accessory for Samantha, given her astounding ability to barf at any given moment.  I shudder to remember just how many disgusting, soaking pieces of cloth and changes of clothing we'd go through in a day.  Yuck.

Again, pre-DSLR, pre-Photoshop...  And yes, I am showing you some of my favorite old photos of her, but don't worry, I'll show you some of the squidgier ones, too...stay tuned...

Tuesday, October 25, 2011

Day 25: MaterniT21

Really, I don't have much of anything today.  Whew!  Coming so close to the end!  I know the focus should be on topics about Down syndrome this month, but I've had to stray from time to time.  I'd love to go into my thoughts on the new prenatal test for Ds, but I think I just don't have the time to give it any real thought today. 

Oh, what the heck.

Marketing.

That's what it boils down to.  Marketing.  It's not so much that the test exists, but it's whether or not it's being presented in a positive or negative light.  I honestly haven't read too much about it, and don't want to be accused of being one of those people who is voicing a big opinion based on hearsay, but just the name of the test itself is leaving a really bad taste in my mouth. 

MaterniT21

Oh, lord, how awful!  It's targeting, directly, Down syndrome, right there in the title (is that seriously what it's called?  I've been too chicken to read most of the articles about it...).  And just the word maternity, implies the warm, fuzzy feeling of motherhood, of maternal instincts.  It's like seeing a big round sign with a picture of 3 chromosomes in it, with a great big red slash through the middle.  No T21.  And while they'll probably all say that it's ostensibly to help people prepare for a child with a diagnosis of Down syndrome, we all know what it's really about...to let people know that they can pursue termination of the pregnancy. 

Termination.

I know not all pregnant women would do that - there are still those who value the life they're bringing into the world, but with a current statistic of approximately 90% of prenatally diagnosed T21 pregnancies ending in termination, there's the absolute guarantee that that number will increase to nearly 95-98%.  Or more. 

I'm heartsick.  To think of all the amazing, positive strides that have been made in the last 20 years to make the world a better place for our chromosomally-enhanced children to grow up in, to make them more accepted and visible, what happens when they cease to exist?  Will they suddenly become pariahs?  Be looked down upon as the ones that were unfortunate enough to have been born, having been born before that miracle test

Oh, poor dears, and their poor, poor families.  So unlucky...

I don't want us to be taking steps in the wrong direction, but I feel a shift is coming.  We'll have to fight harder to be seen and heard.  To let people know that our children have a right to be here, to be part of society.  I think it's going to be more important than ever to get to the medical professionals and educate them - the OBs, the GYNs, the geneticists and reproductive endocrinologists, the midwives... We've got to help teach them how to give full information to their patients, not just to give them the easy way out. 

Ugh, too much to say about this.  I'll end with that.  I'm frustrated.  I hope...just hope... that people are smarter than this.  But I think I know better.

(Okay, here's a random old photo of Samantha, taken when she was about 8 months old)

Monday, October 24, 2011

Day 24: Q&A Part IV


I think this is the last Q&A for this round!  Thank you all again.  And as other questions come up (please feel free to ask them!!), I will answer them in future posts.  This has been so much fun!  (Samantha looks like she's enjoyed it immensely, too...) Oh, and to Pallavi, I love the idea of posting an old pic of Samantha per day, but it may not be quite with that frequency...the old pics are on a different computer than I use regularly, and I'll have to hunt them down.  But I will certainly try every now and then!!  Thanks!  :-)
Q. Would you mind sharing a few of your most frustrating moments related to Raising a little one with Down Syndrome? Have you found youve mellowed with time or become more sensitive?

A. Frustrating, huh? Well, that's a very interesting question that I've been thinking a lot about. It's really tough, because I feel that with only one child, I'm not really qualified to differentiate between the general frustrations of raising a child, any child, vs. raising a child with Down syndrome. There haven't really been things that I would say are frustrating moments that are specific to Ds, but I will say that her first two years of reflux were very frustrating. We were never able to baby-wear, for fear of being covered in vomit at any given moment. I guess if I were to tie that in to Ds, I'd say that her immature digestive system would be to blame. Another frustration would be her unwillingness to chew for the first two years, and the extreme liklihood of her choking if we weren't extra-vigilant. But those are kind of physical, tangible frustrations. I think you probably mean more big-picture stuff. But to be perfectly honest, other than the general worries that we'll always have about her social acceptance and future independence, all the issues are just general child-raising stuff. Oh, yeah, and one more thing...her amazing, astounding ability to be as stubborn as a mule is sooooo frustrating!! Sheesh, that kid can cross her arms and pout like no other...

In answer to the second part of the question, I would definitely say I've mellowed over time.  During Samantha's first year, I was so hyper-sensitive to the fact that she had Down syndrome, I would try to bring it up in just about every conversation I had with just about anybody, including strangers at the store, strangers at the park, you name it.  Part of me just wanted to talk.  Part of (irrationally) thought that people would think I didn't know my kid had Ds.  Yeah, weird, I know, but I felt like I needed to acknowledge it, especially since my general disposition with her was so happy and positive.  I guess I figured others would assume that because I wasn't moping or miserable, I must not know.  Hehehehe, yeah, whatever.    After that first year, it all clicked, and I figured if people knew, they knew.  If they didn't, they didn't, and far be it for me to enlighten them.  It didn't matter - she was my baby first.  Sometimes people who had their own connection to the special needs community would approach me or start up conversation (which I certainly welcomed!), but usually nobody ever said anything, and treated us like any other mother and baby.  As time went on, the only times I ever really got bothered or frustrated (oh, sorry, this could have been added to the first part of the question!) by Sammi having Ds were when we would attend gatherings or birthday parties of "typical" children.  The differences were so in-your-face, and I couldn't help comparing them and getting pretty upset.  I'm sure you've all been there in some capacity.  That, too, has lessened considerably over time.  I still notice it, but am not so affected by it.  My first concern is whether Sammi is happy and enjoying herself, not the things that makes her different from her peers.

Okay, that's it for now!  And tomorrow, my thoughts on MaterniT21... (you know where that post will be going...)

Sunday, October 23, 2011

Day 23: Better Late Than Never

We hit the local pumpkin patch/bouncy castle place yesterday.  What is it with this phenomenon of bouncy castles accompanying the selling of pumpkins?  I don't think I'd ever seen it before we moved here, but it may just be that we'd never seen it before because we didn't have a child that it would apply to.  


Samantha picked out two pumpkins, between crying fits.  All was fine until someone bounced on her, of course, then once she'd pulled herself together from that and allowed herself to have fun again, running back and forth through corrugated plastic tunnels, some over-enthusiastic children began to scream their excitement as loud as they could, the sound echoing and amplifying through the enclosure.  Poor, sensitive little Sammi just stood outside the tunnel bawling her eyes out until I could pick her up and get her out of earshot. 

 

Here she is going down a bouncy slide on her stomach.  I just would like to point out the beautiful new grown-up teeth that are almost all the way in at the bottom front!  I'm pretty excited about the fact that my brave girl has now lost two teeth, and had two new ones come in, all without spending more than a week or two with any sort of gap.  Let's see if we're as lucky with the next batch. 

By the way, does anyone know if teeth will ordinarily fall out in the same order they grew in?  So far we're on that schedule, but who knows what's next?

Saturday, October 22, 2011

Day 22: Some Stuff for Saturday

I'll keep this brief today (say it isn't so!!!)

Thank you to Deb, over at Four Blessings of Mine for featuring me in her Blogger Showcase today!  I'm thrilled to have been asked.  Please visit her blog, and feel free to leave a comment!

And thank you to everyone who visited me in the Blog Hop yesterday - that was a lot of fun (once I actually got a chance to spend a little bit of time on the computer), and I found some great new blogs and got some new visitors to mine!  Raising awareness, spreading the word, making new friends...that's what it's all about!  Oh, and showing off our awesome kids, too...  :-)  Thank you to Erin at Crazy Beautiful Love for organizing!

Not sure what I'll be posting tomorrow yet, but the Q&A will continue on Monday.  By the way, Katey in South Africa - please e-mail me at bateminx@yahoo.com, and I'll put you in touch with our Parent to Parent coordinator who may be able to help you and your organization with some ideas for a similar program to reach out to new parents. 

Btw, just got a Toshiba Thrive tablet.  Can anyone recommend some great, fun, educational apps for Samantha?  It's on the Android platform.  On my phone I've been restricting myself to the free apps (since the screen space is so limiting, why waste the money?), but with the tablet, I'm definitely inclined to spend a few bucks to get something good from time to time.

Friday, October 21, 2011

Day 21: Blog Hop & Q&A Part III


It's Blog Hop Day!!  The 21st day of Down Syndrome Awareness Month.  If you have joined the Hop, please visit Erin's post for the rules and the prizes!  Please visit the blogs of the others involved in the hop by clicking the links at the end of this post!

I'm continuing the Q&A session today with another question, but will continue on Monday, as there's still more.  :-) 
Q.  Becca I thought about this all day, and I'd like to ask you to (re?) post a little about Sammi's early years - some history and baby photos and things so we can all see if she's always been as beautiful as she is today (I feel I may know the answer already :))

A.  Oh, gosh, this kid has definitely always been beautiful, if I must say so myself...  Hope that doesn't sound obnoxious, but wow, she's always just taken my breath away!  History-wise, Samantha was always a very, very easy baby/child.  Even with the heart condition that required open heart surgery at 4 months old, she was and still is very healthy, which actually surprises me, considering her limited palate that does not include vegetables.  We have always had her on a multi-vitamin, which eases our minds a lot, knowing that if she's not going to eat something healthy, at least she'll get some vitamins and minerals from somewhere! 

Sammi didn't really chew anything until she was nearly 2, so we kept her on 2 bottles of formula a day until then, to ensure that she got what she needed for nutrition, supplementing Stage-whatever foods.  Finally, she got with the program, and we were able to introduct more.  I say this, just so those of you who debate the formula/bottle thing will know that kids won't be ruined for life if they're on it for that long - that's why formulas come in that up-to-24-months variety.  :-) 

We got her on a sleep schedule almost immediately, something I'm really, really passionate about.  I can never understand people who don't work hard on that - it will be the best thing you ever did, trust me

Samantha became a world traveller at 9 months old, when we went to visit her Grandparents and aunts and uncles in England for a week.  She did great on the plane and on long car rides.  She went to England again just before she turned 4, and again, she did really well, even though she was coming off a bout of strep and an ear infection. 

She started school at age 2 years, 3 months, and did great.  Now, 3 years later, she is in full-inclusion Kindergarten, and we couldn't be happier with her progress!

Ummmm...let's see...not really sure what else to include history-wise, but below are some early pics (pre-DSLR, pre-Photoshop - forgive me!).  Enjoy!   

At 3 months old.

In England, at 9 months old.

At 11 months old.  It bears noting that this photo appeared in the April 2008 issue of Parents Magazine.  :-)

At 1 year old.

Again, at 1 year old.  Self-feeding for the very first time!


Our very first Buddy Walk, at @1 1/2 years old.

At 21 months old, having just begun to walk full-time.

@2 years old.


And for those of you who wanted to know what kinds of hair bands and hair clips I use in Samantha's hair that don't pull her hair out (too much)?  Uh, can't help you there.  I totally have to go by feel when I'm in the store looking for them.  They're by Goody, but Goody makes, like, 100,000 different hair bands.  And some of them look exactly like the ones I like, but aren't. quite. right.  The ones I get are almost like those loops that you put on the children's looms to make potholders - they're regular hair band size, but they're softer and stretchier than others.  I think they're item #32819 (Gentle Ponytailers) on their website, and the barettes are item #32144 (Bright Snap Clips, although they come out in different colors every season so the style number may change).  I like clips with the rubberized coating, but the coating always winds up peeling off eventually, plus they tend to slide in her hair a lot more.  Their website sucks, so good luck navigating it.

Thursday, October 20, 2011

Day 20: Parent-to-Parent


(The Q&A will continue soon...the last two remaining questions were doozies, and I'll need to give them a bit more time and thought to write!)

When Samantha was born, we were fortunate to have received support and information right off the bat from the hospital.  A social worker came to visit us and brought a folder of leaflets, and while my memory of that visit is pretty much nonexistent (I'm sure none of you are surprised!), I was very relieved to have what was brought.  One of those leaflets was from DSANV, and my eyes zeroed in immediately on the name and phone number of the Parent-to-Parent contact there.  I think it was only within a matter of days after Sammi's birth that I called and spoke to H., who is now a great friend, and H., in turn, put me in touch with another parent volunteer in my town whose daughter with Ds also had a heart condition.  I had so many questions and remember how helpful it was to actually get to speak to people who'd been there and knew what I was going through, people who just listened to me as I unloaded what I needed to unload, asked what I needed to ask. 

I became passionate about new parent outreach, and was thrilled to join the Parent-to-Parent team, going through several training programs, when Samantha was only a year or so old.  Paying it forward, in a way, but more importantly, providing a much-needed service that I wish was available everywhere.

Sadly, it's not.

Time and time again, I hear tales of new parents of babies with Ds who get no information from the hospital, who have no idea what their resources and supports are.  They're left dangling in a sea of negativity on all sides, not sure how to love and care for their children, not sure what to think about their chances of any kind of future.  It's such a shame, makes me really sad. 


How many of you have Parent-to-Parent programs within your Down syndrome associations?  How many of you actually reached out to or were contacted by them?  How many of you would like to see these kinds of programs brought into your area?  I'll tell ya, ours is a GREAT one, and I'm proud to be a volunteer.  I have made some amazing friendships through my contacts as well.

I'm not sure where I'm going with this post, other than to bring attention to the Parent to Parent concept, and to share my experience.  I'd love to hear yours, too.

Don't forget tomorrow's Blog Hop!  Please join the linky below!

Wednesday, October 19, 2011

Day 19: About Reading... (Q&A Part II)


Q.  LOVED the video of Sammi reading. So what are the things you did with her early on to help her get to be a good Kindergarten reader? Help those of us with the little babies!



A.  About that reading…

First a couple of disclaimers – Remember – don’t compare! Children will learn their own way, in their own time. Also, just because a child may not have strong verbal skills doesn’t mean they can’t learn to read. I have seen videos of children learning to read and using signs to show that they know the word on the page.

I was a fairly early reader, being only one of a small handful of children in my Kindergarten class who could read. I have very specific memories of sitting at my little desk, a copy of Tip and Mitten open in front of me. I think Tip and Mitten was my generation’s answer to Dick and Jane. Now, I think Biscuit, many generations later, is the current incarnation. After Samantha was born, I had fantasies of her being able to read by Kindergarten. After all, her mommy did, right? No problem. Hahaha… Reminded me of the time the Early Intervention people came to visit us for the first time, when Samantha was about a month old – they’d asked me what our PT goals for her were in the first year, and I immediately said I wanted her to be able to walk by 1. Okay, so I was a bit off…and perhaps a bit delusional…

I had mentioned in my last Q&A post that Samantha had stopped learning new words by @15 months old. At 18 months we realized that we needed to “bridge the gap” of communication until she started to pick up new words again, and began to introduce signs. I remember like it was yesterday, standing in front of a shelf at Borders (sigh), trying to decide which kind of baby signs materials I should buy to teach both us and Samantha. After a lot of deliberation, I settled on the ones shown in the picture above. I don’t think I realized at the time just how important this box of cards would be for her over the next 4 years. To say they’ve been loved and used and abused is a definite understatement. You can see the state they’re in, even if you can’t see that the box has been broken and re-taped a dozen times. I finally just gave up. Anyway, these cards were important in several ways. The front shows a photo of an item or an action, with the word written in large letters above. The back shows the word written again, with a photo of a woman demonstrating how to create the sign. We, as parents, learned how to make the sign and model it for Samantha. Samantha would learn to make the sign when she saw the picture on the front of the card. The next stage involved Samantha using the pictures to learn to say the words, as we held them up one by one. Once she learned her letters, she used the cards to say each letter in the word then say the word, as if she were reading it (C-A-T…cat!) Now, at this stage, so many years later, I have been turning the cards over and putting my hand over the photo of the woman doing the sign and Samantha has been trying to read the words, with increased success.

And that's where it really started.  Last year, The Learning Program was introduced in our area, sponsored by our local Down syndrome association.  The Learning Program is based on a program developed by the Down Syndrome Foundation of Orange County (DSFOC), and focuses on the visual learner, as most children with Down syndrome are.  The parent is taught to teach the child, providing materials that keep the child engaged while learning.  Materials are available on DSFOC's Learning Program website to download for free.  The Learning Program itself is only offered in a small handful of regions across the country, and we're lucky enough to have it here. 

We missed the enrollment deadline last year, but happened to be approached by Terry Brown, one of the people involved in the Orange County program, who now runs So Happy To Learn from her house, teaching students with Down syndrome to read, write, do math, etc.  She asked us to help her pilot a sort-of correspondence version of her program, via e-mail.  As I am of the opinion that we should throw as many tools as we are able to at our kids in their education and development, so I jumped at the chance.  I can only say that what we learned from her was invaluable.  While we have enrolled in The Learning Program this year, we are also continuing to learn from Mrs. Brown as well.  As not everyone has this opportunity, I ask you all, if you have not yet already, please look into those Orange County Learning Program materials, and go out and get Teaching Reading to Children With Down Syndrome, a Woodbine House publication by Patricia Oelwein!

But first things first - for those of you with younger children, my advice is flashcardsflashcardsflashcards.  Any type, multiple types!  Kids may respond better to one style or type over another.  Sammi learned her alphabet and her numbers from the cards I posted about here, but trust me, we have plenty of cards she isn't afraid to turn her nose up at.  That's why it's so good to get several kinds - you never know what it is that will appeal to them - could be a color, a character, a size, a texture...

I hope this helped answer the question about reading! 

The rest of the Q&A will be in the next post (oh, so many great questions!).

And just in case you'd forgotten, I'm helping Erin at Crazy Beautiful Love host a Blog Hop this Friday, October 21st for Down syndrome awareness.  Please join below and check out the bottom of yesterday's post for instructions!

Tuesday, October 18, 2011

Day 18: 3rd and Final Buddy Walk of the Season

(Q&A will continue tomorrow...in the meantime, please read down to the bottom of this post for a fun Blog Hop for Ds awareness on 10/21!)


Steve's nose is a bit out of joint.  If you're not familiar with that term, it means to be upset or irritated, especially when displaced by someone.  He claims that no fewer than 4 people came up to him at our Buddy Walk on Saturday and said, "Oh, you're Rebecca's husband, right?"  He has ceased to be Steve anymore, and now needs to get comfortable with his new designation, I think.  But he should be used to it already - he's usually Samantha's dad, just as I am usually Samantha's mom.  Actually, with that addition, I think it gives him even more identity, right?  Or doesn't it work that way...?

Saturday was perfect.  Perfect day, perfect company, just...perfect.  Thank you to everyone who donated to DSANV through our team, Sweet Pea United, and thank you to our friends that joined the team and walked with us!  Trust me, this organization has been very good to us and to so many others, and that money goes to a great cause.  

I was so happy to get to meet some of my awesome blog friends (Megan, Crittle, Tricia, Brooke, Denise) IRL, which was a real treat! Especially when it was completely unexpected in two of those cases! Ah, if only we had more time...

Samantha rose to the occasion, enjoying herself immensely, pushing through sleepy-time like a pro, then yapping the whole. ride. home.  Not sure how she did it - I was ready to drop!     



Grand-Marshall-and-icon-to-children-with-Ds Rachel Coleman (in the gold jacket, to the left) leads off the pack.  She performed later, and I dragged Samantha down to the stage, hoping she'd want to dance, but she wanted nothing to do with it.  Frankly, I was a wee bit jealous, watching the sea of children and their parents dancing and signing along to the songs, while I was completely clueless (see my post the other day about why Sammi doesn't know Signing Time).


And the crowd surges ahead...  I felt like I couldn't adequately convey just how many people were there!  I wonder what the final count was, but I think we've usually averaged @2,000.  Given the weather, certainly that number was higher...?



Our cool yellow sign post for hitting (and then exceeding!) the $2,000 mark. 


It was a day of educators.  Joining us on the walk were Samantha's teacher from the private preschool she went to last year (pictured below - we LOVE Miss Katie!!!) and her Assistant Principal from the public school she'd been in for the last 2 1/2 years.  Both said they had an amazing time, which really means a lot to me.  I know that getting educators involved in Down syndrome awareness is hugely important - these are people that are perfectly set up to make huge differences in our children's lives, and these two in particular certainly already have. 

Also at the walk, having joined other teams, were Samantha's private speech therapist and her current Assistant Principal!  Sooooo glad to see so much support from all sides.  :-)

Yep, that's Dora on that horse!  There was some serious character weirdness going on that day, starting with Elmo's broken eye and skinny, matted, cracked-out self, then Spider Man's need for a little girdle (although he was soooo nice - he picked Samantha up and was talking to her, and even directed us to where Dora was), then Dora riding a horse.  Hmmmm...whatever.

The day ended with Samantha getting up on the stage and dancing.  Seriously, this child should have been nearly unconscioius by that time, but she was like the Energizer Bunny, all set to keep on partying!

Looking forward to next year already!!

Oh!  And one more thing!  Erin, at Crazy Beautiful Love, has come up with a brilliant plan to help raise awareness on October 21st, and I have agreed to be a host.  Sounds like fun!!  See below:

Copied from her blog post...(because I certainly couldn't come up with this on my own!!!)

Hoppin' for 21 "rules":


1. You need to be a blog owner. The blog does not have to be a special needs blog. You only need a desire to promote awareness for Down syndrome. (Scroll down to see how those that do not blog can participate too!)

2. Link your blog up below. You can begin linking up immediately. You must be linked below to be eligible for the giveaways! (see below)

3. On the day of the hop (10/21), visit as many blog hop participants as you possibly can!

4. Leave a comment letting that site know you found them from the Hop and you appreciate them supporting awareness of Down syndrome.

5. (Optional) If you see a site you like, become a follower! Make sure you let them know you are a new follower and they just might follow you back.

6. (Optional) Mention somewhere in a post on the 21st that you are supporting Down Syndrome Awareness month by participating in the hop. I will provide a thumbnail for those that want to share it with others!

7. (Optional) Drop by each site of those hosting the hop and say HI! Let them know you appreciate them hosting!

8. (Optional) Help us promote the hop! Mention it in posts, on facebook, twitter and provide a link back to the hop link page. The more people that participate, the more people become aware of the beautiful designer gene world of Down Syndrome.

Giveaways:

Every participant (excluding the hosts) will be entered in a random selection giveaway. Right now we have two prizes and I hoping for one more donation. You only need to participate and follow the "rules" to be eligible.

1. $10 Walmart Giftcard

2. Lily Bloom lunchbag

3. (Facebook giveaway)

Facebook:

So, you don't blog huh? That's okay! You can help spread awareness too!

An event has been set up on Facebook for those wanting to participate. Just go here to see how.... Hoppin' for 21 on Facebook. Those who take part in the Facebook event will be entered into their very own giveaway for a $10 Target Giftcard. The basic idea is that you join the facebook event and follow the event "rules". The rules involve you posting a status on 10/21 stating that you are participating in the Hoppin' for 21 event to support Down Syndrome awareness and provide a link back to the Hoppin' for 21 on Facebook event page. That's it. Simple. Plus, don't forget you do not have to be a blog owner to read blog posts and leave comments!

Questions about the hop? Send them to info@crazybeautifullove.com and she'll get back to you as soon as she can.

The Hop starts at 12:00am on Friday October 21st and ends at midnight!

Monday, October 17, 2011

Day 17: My First Q&A! (Part I)

I'm so excited to be posting my first Q&A!  Thank you to everyone who left questions for me on Friday's post.  I had to do some serious thinking about some of them, too.  I'm going to have to break this into two posts, seeing as I'm rather long-winded in my answers... 

It was a little bit of a problem that I'd disabled the right-click function in Blogger, though, as I couldn't then copy the questions directly into this post, but eh, I'll get over it.  Gotta love alt-tab. 

Q. How did you grow out Sammi's hair so gorgeously?  Were you ever tempted to cut it?  Did she resist the clips and holders and stuff?

A.  Sammi's hair is really a story of how my resistance to a preconceived notion of mine about Ds just got out of control.  I had wondered, when she was born, if kids with Ds had to have that institutional bowl cut that it seemed I saw in my memory bank of old photos.  I thought if I could have her hair long and natural, I could smash that particular stereotype and ensure she'd have a more "normal" childhood or something.  So I just never cut it.  Ever.  Not even a trim.  Actually, when she was born, some of the OB's first words were, "Wow, I've never seen a white baby with that much hair!"  I was never really tempted to cut it, although I do receive some pressure from time to time from other family members (thanks for the haircut scissors you brought over two weeks ago, Mom...I get the hint...LOL).  Correction...I am now tempted to cut it a little bit to bring it back to her waistline.  I asked her last week if she wanted me to cut her hair, and she said no and got upset.  Oops!  What have I done?  Oh, about the clips and stuff...at about 3 months I had to use a single clip to keep her hair back off her forehead.  Once she discovered that she could pull the clips out, which was a brief phase, I just had to be persistent and keep putting them back in.  Eventually she was resigned to the idea that she had to live with them.  I can only use very specific hairbands and clips in her hair because so many others get tangled or caught, and trust me, I have tried them all.  It's just been a lot of trial and error.  Sammi doesn't love having her hair done, but she's pretty good with it unless I'm trying to pull a hairband out of her hair from too close to her head.  Ugh, I'd hate that, too!  I usually do her hair while she's eating breakfast and watching TV in the living room in the mornings.  I do miss being able to have her hair in pigtails or a pony tail instead of braids (having her hair down poses certain, uh, logistical issues when it comes to sitting on the toilet, and it also gets pretty tangled), but I also just love the braids, too!  I think the day is coming, though, when I need to bite the bullet and take it all up a bit...

Q.  When did Sammi start talking and did you start sight words (etc.) before she started talking?  I think I've waited too long, %^&* linear thinking.  I think we're just going to navigate around the speech & dive in visually.  Your experience?

A.  This is a great question, and I'll answer this before I get into the reading questions (next post).   Sammi actually started talking (relatively) early, with her first spoken word @11 months (more).  By 15 months she had about 15 spoken words and no signs (we'd never introduced them at that point), but then, while she kept those words, she stopped learning new ones.  At 18 months we realized we needed to do something to bridge the gap until she started learning new words again, so we introduced a few signs, which really helped.  At 21 months, when she started walking, her language began to take off again and we eventually dropped the signs soon afterwards.  (Btw, this phenomenon is fairly typical of our kids with Ds...they lose traction in one developmental area while concentrating on mastering another, then explode with new skills once that other goal is met, like walking.)  We didn't actually introduce sight words, other than the ones that accompanied the pictures on some baby-sign-language flashcards we had, until this past year (also to be discussed in my next post about reading).  Please keep in mind that children don't need to be able to speak to be able to read.  I saw some videos last year of children with Ds who were learning to read and using signs to communicate what they were reading.  So sight words can be introduced at any time, with or without verbal skills.  And it's never too late, either.  Learning is an ongoing process.  When asked by parents when they will know what their young child with Ds will be capable of, Samantha's geneticist tells them, "at the end of their life."  You can never know what they'll be capable of - there is no time/age when learning new things just stops.  They will always learn new things, provided the opportunities and tools.

Q. Have you thought on having another daughter/son???  :)

A.  Omg, this was probably the hardest question of all!!!!  Wow.  We had only ever wanted one child to begin with.  And when Sammi was born and for the first 3 years of her life, I felt like there was no way I could ever love another child as much as I love her, and I couldn't ever ask her to have to share love with another child.  As she grew older and more mature, I knew that actually, she could handle that, and would probably love to have another child in the house, but financially, we're not in a position to have another child (through adoption), from the standpoints of having one of us stay home from work again, daycare costs, future costs, etc.  Also, perhaps a bit selfishly, we're not prepared to have another child.  Sammi's at a really easy age right now, and is just so much fun to do things with.  We're enjoying so much the ages and stages she keeps growing into, and love not having to be distracted from any of it!  Hope that made sense...

Q.  hmmm.  do you mind if I steal this idea?

A.  Oh, of course!!  I stole it from someone else, so hey, go for it!  Maybe someone should write some sort of Blogger Code one day, something that outlines all the (previously) unwritten rules of blogging, including the one about it being perfectly fine to steal post ideas.  Eh, nothing's sacred...

Okay, I've written quite enough for now.  The rest of the questions will be answered in my next post (or the one after that), as I feel that they'll require a lot more room and time to answer.

2BContinued...

Sunday, October 16, 2011

Day 16: Scary Sunday: Elmo Attacks!

Some of you have already seen this unfortunate photo on Facebook that I posted yesterday.  It's from our Buddy Walk (more on the event later).  I can only say that Elmo is actually a lot scarier than he looks, and I think we should be schooling our children to realize that a creepy person in a straggly red fur costume is not the sweet little boy-monster who talks in first person and loves his fish, Dorothy.  As a matter of fact, just adding to the creep-factor, Elmos with creepy people in them don't actually speak at all.  And they make Elmo look dirty and super-skinny, kinda like Elmo with a brutal substance (read:  crack) abuse problem. 

And Elmo eats children.

There.  I said it.  And I have proof.  Samantha nearly found herself in his clutches today, an unwitting victim, falling prey to the wolf in sheep's clothing.  But her ever-vigilant mommy noticed something before it was too late for her, even if it was too late for his other victims...


Okay, I'll fess up, and you can all relax - it was just a very fleeting, random moment caught on camera, a perfect juxtaposition of foreground and background (quickly edited just so you could see it better).  Really.  You don't have to hide your children from Elmo, and he's not quite that scary.  Okay, maybe he is...

Saturday, October 15, 2011

Day 15: Myths and Truths About Down Syndrome

Thank you to everyone that's left questions for me on my last post!  Please keep them coming - I'll have my answers on Monday or Tuesday.  They are very well thought-out questions (yes, even yours, Meriah!), and I'm really quite looking forward to it!

It's now the weekend and I haven't yet had a chance to write anything meaningful of my own.  Today is our local Buddy Walk, so I'll be there while you read this, and will have a post later next week about it.  In the meantime, here are some myths and truths about Down syndrome that I copied off of the NDSS website.  I did not have permission to copy them here, but I think, with this disclaimer, it shouldn't be a problem.  If it is, please let me know, and I'll pull this, or paraphrase instead.  :-) 

I know that most of us in the Ds community already know these truths, but for those of you who may not, I hope you'll learn something from it!

Myth: Down syndrome is a rare genetic disorder.
Truth: Down syndrome is the most commonly occurring genetic condition. One in every 691 live births is a child with Down syndrome, representing approximately 6,000 births per year in the United States alone. Today, more than 400,000 people in the United States have Down syndrome.

Myth: People with Down syndrome have a short life span.
Truth: Life expectancy for individuals with Down syndrome has increased dramatically in recent years, with the average life expectancy approaching that of peers without Down syndrome.

Myth: Most children with Down syndrome are born to older parents.
Truth: Most children with Down syndrome are born to women younger than 35 years old simply because younger women have more children. However, the incidence of births of children with Down syndrome increases with the age of the mother.

Myth: People with Down syndrome are severely “retarded.”
Truth: Most people with Down syndrome have IQs that fall in the mild to moderate range of intellectual disability (formerly known as “retardation”). Children with Down syndrome fully participate in public and private educational programs. Educators and researchers are still discovering the full educational potential of people with Down syndrome.

Myth: Most people with Down syndrome are institutionalized.
Truth: Today people with Down syndrome live at home with their families and are active participants in the educational, vocational, social, and recreational activities of the community. They are integrated into the regular education system and take part in sports, camping, music, art programs and all the other activities of their communities. People with Down syndrome are valued members of their families and their communities, contributing to society in a variety of ways.

Myth: Parents will not find community support in bringing up their child with Down syndrome.
Truth: In almost every community of the United States there are parent support groups and other community organizations directly involved in providing services to families of individuals with Down syndrome.

Myth: Children with Down syndrome must be placed in segregated special education programs.
Truth: Children with Down syndrome have been included in regular academic classrooms in schools across the country. In some instances they are integrated into specific courses, while in other situations students are fully included in the regular classroom for all subjects. The current trend in education is for full inclusion in the social and educational life of the community. Increasingly, individuals with Down syndrome graduate from high school with regular diplomas, participate in post-secondary academic and college experiences and, in some cases, receive college degrees.

Myth: Adults with Down syndrome are unemployable.
Truth: Businesses are seeking young adults with Down syndrome for a variety of positions. They are being employed in small- and medium-sized offices: by banks, corporations, nursing homes, hotels and restaurants. They work in the music and entertainment industry, in clerical positions, childcare, the sports field and in the computer industry. People with Down syndrome bring to their jobs enthusiasm, reliability and dedication.

Myth: People with Down syndrome are always happy.
Truth: People with Down syndrome have feelings just like everyone else in the population. They experience the full range of emotions. They respond to positive expressions of friendship and they are hurt and upset by inconsiderate behavior.

Myth: Adults with Down syndrome are unable to form close interpersonal relationships leading to marriage.
Truth: People with Down syndrome date, socialize, form ongoing relationships and marry.

Myth: Down syndrome can never be cured.
Truth: Research on Down syndrome is making great strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome. Scientists now feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.

Friday, October 14, 2011

Day 14: Questions, Questions, Questions!

I'm off to an all-day work conference today, so no time to post much.  But I've noticed a few people opening their blogs up to questions about Down syndrome/our life/whatever from people this month, and I think it's a pretty great idea so I'm going to steal it right now.  It could be great, or it could be an embarrassing moment of silence a colossal failure.

By the way, I do accept Anonymous comments on my blog, so feel free to hide behind  utilize this feature and don't make me look bad hold back and ask, ask, ask away!

Thursday, October 13, 2011

Day 13: Buddies at the Boardwalk


In very stark contrast to the last Buddy Walk we attended, only a short week prior, Samantha and I found ourselves at the warm, sun-drenched Boardwalk in Ocean City, NJ, for the 21 Down Buddy Walk this past Sunday.  21 Down is the Down syndrome organization serving Atlantic, Cape May and southern Ocean counties, areas just east of where I grew up.  It was odd, but I really felt at home with the people there, felt a sort of kinship with people so familiar to me, so similar to those I grew up with, but in the equally familiar context of how my life has changed over the last 5 years.  Flashbacks throughout the day were fast and furious, and welcomed

The group was larger than I'd expected, with probably about 500-600 people.  It started out in a large indoor gymnasium, with a band playing music loud enough to bring any sensory-overloaded child to tears (surprising!), but fortunately there was a wide-open stadium attached where we could escape to feel the fresh air and listen to the sounds of the ocean on the other side of the parking lot. 

Btw, I'm totally in love with this t-shirt! 


It truly had to be the most beautiful day possible for the event.  Samantha and I met up with some new friends from my home town, played in the sand on the beach, missed the actual walk (oops!  I'll blame the joint lures of ocean and rides, both way too close to resist!), ate ice cream (why did I not know before that Kohr Brothers frozen custard is just about the best. possible. soft. serve. EVER?  Puts Dairy Queen to shame...), and went on lots and lots of rides.  Samantha has been hot and cold about rides over the years, sometimes enjoying them, sometimes crying, sometimes resistant to even trying them out.  But Little Miss Adventure Pants was all. about. the. rides on Sunday, wanting more and more and more.



I'm pretty sure these are the exact same speckly, fiberglass cars I rode in when I was little.  Gave me chills to realize that, seeing my own little one following so closely in my own footsteps, her little bottom sitting on the same seat my little bottom may have sat on oh-so-many-years ago...

And for the very first time, Mommy wasn't too chicken to let her baby big girl ride the carousel horse (the one that goes up and down, at that!) all by herself (instead of hovering next to her, keeping an unnecessary hand on her back), letting Mommy actually get to ride on her own horse and enjoy the ride as well.  Wheeeeee!!!


One more Buddy Walk to go, this Saturday, when we attend our own local event.  Our team pins from Zazzle have arrived, our fundraising goal has been met (see the thermometer in the side bar!), and I'm stalling this very moment from creating our new Team Sweet Pea United sign.  Yeah, yeah, I'm gonna do it...maybe tomorrow night...  *yawn*

Wednesday, October 12, 2011

Day 12: Stand For What You Believe! (alternately titled: OMG, it's POISON!!!!!)

A quick housekeeping note - my sincerest apologies for going on day 4 or 5 of not having a chance to catch up on all the wonderful blogs I follow!!  I feel a bit of an empty spot today for not knowing what you and your beautifully-enhanced (uh, that sounds a bit like we're genetically-engineering our kids...) children have been up to or what valuable tidbits of advice you've posted these last few days.  While I love being busy, I don't like to be out of the loop for so long.  Bear with me, I'll be back and catching up eventually!!!! 

And, in the interest of time-saving skills at their best, rather than finish writing the dozen or so posts I've started in my queue (including my 2nd Buddy Walk of the season from this past Sunday), here's a quick, fun news story link for Down Syndrome Awareness Month.

For those of you who live in Florida, who may or may not live somewhere in the vicinity of Orlando, who may or may not be fans of the slightly hypochondriacal, ever entrepreneurial, rather loose, uber hot Brett Michaels, who may or may not be ready to admit to re-live their hair band days of yore, Poison are doing a concert to benefit the Down Syndrome Foundation of Florida on November 5th!!  Click here for full information or to purchase tickets for the Stand For What You Believe concert.  Not sure I want to pay $2,500 to have a hot dog with Brett (oh, so many things I could say here...), but a good cause is a good cause.  How cool is that?

From the website:

Poison added this unscheduled and intimate concert after the end of their Reunion Tour - it is unlike anything they have ever done before!

VIP ticket holders will enjoy an after-party where the band members are going to serve up Nothin' But a Good Time at an exclusive BBQ on the John Lennon Terrace at the Hard Rock Live after the concert.

ONLY 43 tickets on sale to the public for VIP Experience!
CALL 407.222.7232 for VIP Package Sales
$1100 @ VIP Experience
VIP Reception
Reserved Table Seat in Lower Balcony
BBQ & After-Party with Poison
$2500 @ 'Like a Rock Star' Experience
VIP Reception
Personal invitation by Poison for exclusive viewing area for entire show
BBQ & After-Party with Poison

Mingle and have a burger or hot dog with POISON. This is the only time the band has ever held this kind of VIP event.

During the concert the band will auction off select items and a LIMITED number of VIP passes to their BBQ after party.

All proceeds of the concert will go to support the vision and mission of The Down Syndrome Foundation of Florida.

You don't want to miss Poison in Orlando!

Tuesday, October 11, 2011

Day 11: Little Miss Independent

Oh, how bittersweet it is...

One of the things I (and I'm sure I'm not alone in this...) worried about when Samantha was born and we received her diagnosis of Down syndrome, was whether or not my child would ever grow up to be independent. Independence is such a grown-up concept, one that "typical" children start to assert and seek pretty early on, pushing harder as the teen years progress into adulthood. And then there comes the time when the young adult, suddenly realizing that they have a pretty good deal, living in their parent's basement, gets pushed out of the nest and forced into independence by parents, who have had enough.

I pictured a slack-jawed, blank-faced woman-child, holding my hand, shuffling just a little bit behind me, completely uninterested in our surroundings. I knew that independence was a myth, a distant dream, an impossibility.

Sure, my ignorance about Trisomy 21 gave way to every stereotype there ever was. And then I began to learn that those distant dreams may not be so distant after all.

I could go through all of the reasons why and how I figured out just how wrong I was, but here's a shining new example, a brilliant, beautiful, yet heartbreaking moment that showed me just what my little girl is made of.

She wanted to walk to school by herself.

Last Thursday, the moment we turned the corner and hit the sidewalk in front of the school, Sammi wanted nothing more to do with me. Not. A. Thing. She told me, in no uncertain terms, to stay put, stop walking, she would do it "all by myself!" I shadowed her along the walk, through the entrance, down the hall, keeping back far enough to satisfy her, as she oozed confidence and maturity, slipping into the sea of other students, one amongst many within the tide as they all pushed towards their classrooms when the first bell rang. Hovering outside her classroom door, I peeked in, unseen by her, and watched her take off her backpack, remove her folder from inside, and place it on the pile for the teacher. She caught a glimpse of me, but carried on, and, after letting one of her teachers know, I turned and walked home, a little sad, but still very proud.

I knew it would not be an isolated incident, knew the very next morning that she would not be limiting her independence to the sidewalk in front of the school, was prepared for what was to come next. The very next morning, the walk on her own began at our doorstep.

"Stop walking, Mommy! Wait your turn! I going to school all by myself!" Yep, that's what I got if she caught me tailing her. She didn't mind that I was behind her, she just didn't want to see me moving.

I have to say, though, that she walked an awful lot faster when she was on her own, much less distracted, so much more purposeful, confident, strong, independent

And it was awesome.

Monday, October 10, 2011

Day 10: How to Get Your Kid to Eat Vegetables in 3 Easy Steps

How to get your kid to eat vegetables in 3 easy steps:

1.  Lament in your Facebook status that you have failed, yet again, to get her to eat vegetables (makeshift, baked zucchini fries = colossal failure)

2.  Listen to your "friends" (real and virtual) who pipe in with advice.

3.  Actually try one of their suggestions.

Oh, the wonderful, magical, undeniable power of Facebook!  Nothing is TMI, nothing is taboo, nothing is too dumb/silly/simple/banal to make a status out of, and everything (okay, well, almost everything) garners countless comments from countless people whose names you may have heard before, whose faces you certainly have (most likely) never seen.

Thank you Cathleen (someone I actually do know IRL, btw...) for suggesting that I try letting Sammi cut her own veggies, giving her incentive to try her own creations! 

So after her bath, and after she brought the step stool into the kitchen from the powder room, I brought out the vegetable dip and hummus...



...gave Samantha a butter knife, and let her work her aggressions out on half a zucchini.



And she ate some.


Sunday, October 9, 2011

Day 9: Amazing Inspiration: Kelly Fitzgerald

One of my big worries when Samantha was born (sheesh, have I actually started the beginning of just about every post this month with those words, or am I just dreaming it?) was how she would never have children, never go to college, never live on her own, never drive.  Since then I've been so absorbed by the very few and far between stories of people with Down syndrome having children (very, very, very rare), living on their own (not as rare), getting their driver's licenses (also in that very, very very rare category).  Actually, I'd swear (but wouldn't venture to bet money on it) that I saw someone in my town with Ds, driving a van.  I could be sooooo wrong, just hoping against hope, but hey, who knows?   

I found this video on someone's blog last week (I think it's been out for a while, so I'm a little late to this party), and am completely blown away.  It's quite long, but if you even just watch the first 2 or 3 minutes, you'll get the picture.  This woman is amazing, and truly inspirational.  I like to think that anything's possible for Sammi and so many others with Down syndrome.

Saturday, October 8, 2011

Day 8: What Do Your Cell Phone Photos *Really* Say About You?

This isn't a post about Down syndrome this morning, and could be construed as a little bit of weekend filler, but certainly no less important when it comes to our kids and our own well-being.

Especially those of us with smart phones.

Watch this short video and be afraid.  Be very, very afraid...

Friday, October 7, 2011

Day 7: In Search of Happy, Healthy Hearts



Did you know...

Heart defects occur in 40-60% of children with Down syndrome?

Sounds pretty crazy, doesn't it? 

  • 60% of those defects are a Complete AV Canal Defect - AV canal is the tissue that forms the walls between the heart's atria (top chambers) and ventricles (bottom chambers).  When this development is incomplete, the blood leaks backwards through the valves, and heart surgery is required relatively quickly, at 3-4 months in many cases, or earlier if the baby is in active heart failure.  Usually it is preferred that the child reaches a certain weight first, before surgery, to help ensure that they will be strong enough to survive the procedure without complications.  This is what Samantha had.
  • 32% of defects are a Ventricular Septal Defect (VSD).  This is an opening in the wall between the left and right ventricals, and usually causes a murmur.  Some VSDs will close on their own, others will eventually require surgery.
  • 6% of those with heart defects have Tetralogy of Fallot, a complex and very serious anomally that generally requires immediate surgical intervention.
  • Two others, each occurring as 1% of heart defects associated with Down syndrome, are Atrial Septal Defect (ASD) and Isolated Mitral Cleft.
When Samantha was born, not only did I know next to nothing about Down syndrome, struggling to digest that little revelation, but I was totally blind-sided by the visit from a cardiologist in my hospital room who came to drop the big, ugly, unbelievable bombshell on us that she would need open heart surgery in 3-6 months.  No new mom really needs to hear that.  No parent, period, really needs to hear that!  I didn't even know that there were health issues that could be associated with Ds at all. 

Got my first lesson that day.

And in the subsequent days to follow, I discovered how wonderful it was to have not received a prenatal diagnosis.  As it was, I'd had a pretty nice walk-in-the-park of a pregnancy.  No complications, no stress, no worries.  Seriously, if I'd known all of that ahead of time, I think I would have hidden under my bed, a quivering blob of...uh...blobbiness, incapable of speech or rational thought.  I stand in awe of those that can take and digest that information prior to the birth of their babies, who can arm themselves with knowledge and begin their advocacy bright and early.  With the new prenatal testing that's out there, the world will need so many more of those of you who can use the information to prepare, not terminate.

And I exaggerate - I'm sure I would have managed just fine with early info, but I can say with so much certainty that ignorance truly can be bliss in some situations.  :-)