Thursday, October 8, 2015

Josie & "Sweets"

Josie attends preschool in an inclusive environment; the majority of the class consists of typically developing peers and there are a couple of children with special needs.  The kids who need additional assistance, like Josie, are assigned an aide or paraprofessional (para).  

Josie lucked out this year and she got the same aide that she had last year.  She's a beautiful, soft-spoken, and maternal woman named "Ms. Lisa."  Ms. Lisa has a soothing and graceful demeanor that evades me.  She emits such a tranquil vibe that I wish I had a "Ms. Lisa."  She's cool, calm, and collected in the face of preschooler chaos.  More importantly, she's unflappable in the face of Josie's obstinacy.
Josie adores Ms. Lisa.  She cherishes their relationship so much, that she refuses to adhere to the appellation, "Ms. Lisa."  No, "Ms. Lisa" just doesn't do it justice.  Instead, Josie has assigned the moniker "Sweets" to her beloved aide.

Where did "Sweets" come from and why does Josie insist on calling Ms. Lisa that?  Heck if I know.  But she refuses to be dissuaded from this nickname.  It reminds me a lot of when Leanne decided Josie would hereby be known as "Catfish with Ketchup."  Travis and I pleaded for a cuter, more feminine nickname, but Leanne would have none of that.  The name stuck.

However, feeling like Josie should show more respect to teachers and other school staff members, I've been encouraging Josie to adopt "Ms. Lisa" as a more appropriate title for her aide.  After all, Travis can't go to work and randomly call his colleagues "Toots" or "Sugar."  Did you call your high school English teacher "Doll Face"?  I didn't think so.
It's not as though "Sweets" is incredibly off base.  You'd likely be hard-pressed to find anyone to refute the allegation that Ms. Lisa is, indeed, very sweet.  But what happens someday when the foremost adjective used to describe Josie's staff members isn't "sweet"?  We can't have her going around calling people "Cranky Broad".  
Ah, but for now I'm afraid I'm fighting a losing battle.  And the "Sweets" term of endearment - well, it's just that.  And "Sweets" told me that she doesn't mind.  It's kind of their thing.  So here's to you, Sweets.  Thanks for putting up with our sassy little Catfish.

Sunday, October 4, 2015

Why This Weekend is Going to Rock

I wanted to blog tonight.  I had the time, I had the solitude (yaaaay for little ones sleeping peacefully), and I even had a list of topics that I want to address.  But fatigue discouraged me from delving into anything that requires too much brainpower.  

As I was browsing through "Aunt Leanne's Top 5," seeking inspiration, it dawned on me: I don't need to write a blog post.  The blog writes itself when Aunt Leanne is around.  And Aunt Leanne will be here THIS WEEKEND! (And I bet she's bringing #ThePurpleRobe).
 Hooray!!!!  I'm pretty sure that just got me off the hook for slacking in the blogging department.  My big sister is coming to celebrate my birthday (and her "brother's" birthday as well).  We could ask for no better gift!  Get ready to party!  

Thursday, October 1, 2015

October is Down Syndrome Awareness Month

October is Down Syndrome Awareness Month.  It's an opportunity to promote acceptance, appreciation and inclusion for individuals with Down syndrome.  This month we celebrate Josie, Aunt Leanne, and all of our other chromosomally enhanced friends.  You make the world a better place!  

Monday, September 21, 2015

Did I mention we had a third baby...a year ago?

Awhile back, a well-meaning blog reader emailed me to inform me that my "About Us" and "FAQ's" were in need of an update.  And she was right.  These pages were sadly outdated.  We're talking years behind.  Merryn was a baby and Lydia, well, Lydia didn't exist. Whatsoever.  I believe the sender of said email had good intentions and she just wanted to bring this issue to my attention and help me out.  

What was my response to the email?  I laughed.  And then I forwarded it to a friend and fellow blogger with 3 kids close in age to mine so she could share in the unintended punchline.  You see, it's not that I don't care about this blog or that I'm tired of it.  I am still very passionate about and committed to CCE.  It's just that I have 3 children.  And the most self-sufficient one just turned four.  And while Merryn/Mother Hen is extremely helpful, she's busy.  I did "A Day in the Life" profile of Merryn on Instagram today and several followers commented on how exhausted they were just reading it.  And she only accounts for one third of my daily responsibilities.  

The thing about being a mom is, some days are like this:
 Flying high, warm sun, cool breeze, big smiles, and enjoyable moments.

Other days, motherhood is more like this:
 I give up!  I can't do this anymore!  You guys are driving me crazy!  I need a drink!!!!!

But most of the time, my day-to-day mom life looks something like this, except my ride isn't as flashy and I always have 3 small children in tow:
Go, Go, Go!  Fast, Fast, Fast!  Get in the car!  Where are your shoes?  Do you have to go potty? Lydia, why do you always poop the minute we're walking out the door?!  Oh wait - I need to put some clothes in the wash.  Don't let me forget to empty the dishwasher.  Oh, and we need milk!  I need to stop for milk...and what else was it that we really needed?  Oh my goodness I can't remember but I'm low on gas and I really need to get this car to the car wash.  And the stroller tires need to be inflated.  Wait - is today Physical Therapy or is that Thursday?  When is the window treatment guy coming?  Lillian desperately needs to go to the groomer; remind me to call.  Where was that form I was supposed to mail?  We need to get a present for that birthday party on Saturday...etc...etc...etc...

Back to that email I received...I started to update the "About Us" tab more than a month ago.  And if you click on it now, you'll realize it's not exactly a reflection of a month's worth of work.  It's a reflection of an impetuous effort completed in a series of 2 minute increments, interrupted by the clamorous demands of 3 little ones and impeded by the subsequent exhaustion that follows.  But, at least Lydia exists now!

One of these days/months/years I'll get around to fixing it.  But for now, I'm experiencing my "Five Minutes Underwater," and I'm genuinely trying to enjoy it.

And because memory storage is A LOT faster and easier on Instagram, you'll find us much more active over there.

  And I do plan on updating the FAQ's one of these days (That means "Frequently Asked Questions," Mom) so if you have a question or if you notice a gap in the information we've provided, leave us a comment or email us at!

P.S.  If the blog looks distorted on your screen, it's because I was messing with it at 1am after Mr. Technology was fast asleep...I really have no business messing with the margins at all.  Insomnia will make you do things you shouldn't be doing.  Let me know and I'll nag him to fix it ;-) 

Thursday, August 27, 2015

A Different Kind of Tears

Last October, CCE featured a post about Josie's unexpected preschool enrollment and my subsequent emotional breakdown (CLICK HERE).  I cried so many tears over the thought of letting my baby go.  But that story had a happy ending.  Josie loved preschool.  Preschool loved Josie.  Every day Josie eagerly waddled her cute signature waddle (made even more clumsy by the cumbersome backpack that she wore) up the sidewalk and she confidently entered the doors of her school. Her face lit up as she greeted her classmates, their parents, the teachers, and aides.  But no one commanded a bigger smile than Mr. Don, the school custodian.  

Mr. Don unlocks the door and holds it open for the preschoolers to file into the building, slapping him five as they pass.  For whatever reason, Josie took a liking to Mr. Don, and this ritual became the highlight of her day.  As the year wore on, she would make a beeline straight for the door, press her nose to the glass and call out for Mr. Don until he arrived.  She would run to him and grab his hands and they would rock side to side in this little dance while Josie beamed as she stared at him and sang out "Mr. Doooooooonnnnnnn!!!!"

After having the summer off of preschool, we returned today, and as expected, Josie made a beeline for the door and called out for Mr. Don.  When he didn't arrive, she became impatient and to my surprise, she walked over to the office entrance, hit the wheelchair access button (Who knew she knew how to do this?!) stormed through the door as it automatically opened, and barged right up to the school secretary, Ms. Judy.  
 Ms. Judy is Mr. Don's wife.  She's told me that she and Mr. Don just adore Josie because she reminds them of their middle daughter who wore little pink glasses as a child.

Upon seeing Josie, Ms. Judy exclaimed "JOSIE!" and Josie cut her off and urgently said "Ms. Judy! You want Mr. Don!"  (pronouns confuse Josie and she frequently says "you want" when she actually means "I want").  

Slightly mortified by her diva-like demands, I tried to calmly coax Josie back out to the foyer where she was supposed to be waiting patiently.  That's when I heard Ms. Judy radio "Mr. Don, please report to my office.  You have a very special visitor"

And with that, Mr. Don magically appeared.
Josie's face lit up and she ran to him - well, Josie doesn't run but she shuffled over there as quickly as she could...

 ...I was seeing it all in slow motion; it was like a movie scene.  He put his hand up to the glass.  She put her hand on top of his...
 That's when my tears started flowing.  But they were a different kind of tears than I experienced last year.  They were the moved-from-the-bottom-of-my-heart tears.  They were tears of profound gratitude that I was delivering my baby back to this environment where she is loved and cherished by the most kind community of people who appreciate Josie for all that she is.  They treat her like they're lucky to have her there.
 Mr. Don and Josie did their signature dance and I ushered Josie back out to the foyer upon realizing I'd left baby Lydia in the stroller unattended.

That's when more teachers and aides came pouring through the doors eagerly greeting Josie with smiles and hugs.
 "Ms. Carrie-elle!" Josie exclaimed at the sight of "Ms. Carol," whose name Josie never learned to pronounce correctly.  Ms. Carol beamed and said "I haven't been called that in months!  I missed it!" as she bent down to give Josie a hug.
More happy tears washed down my face as I turned and headed out the door, so grateful to be leaving my daughter in the loving hands of these wonderful people.

Friday, August 21, 2015

National Down Syndrome Congress Convention 2015

WARNING: This post contains an excessive amount of selfies of two chromosomally deprived individuals who fall dramatically short of the cuteness standards you've come to expect from CCE.  Please accept the following image as an apology and peace offering:
It's finally here: A post about our incredible weekend at the National Down Syndrome Congress Convention 2015!  What is the convention all about?  It's a fun-filled weekend at a luxurious resort where top experts in the field host seminars on topics related to Down syndrome.  There's something for everyone at the NDSCC because they have a customized experience whether you're a parent, a sibling, an adult sibling (yeah, this whole thing provided massive confusion for me and made me want to clone myself more than once), a parent of a child with a DS-ASD dual diagnosis, a self-advocate (individual with Down syndrome), and the kids (childcare and activities are included).

Workshops covered topics related to ALL ages including prenatal testing, feeding, communication skills, gross motor skills, fine motor skills, success in the classroom, IEP's, inclusion strategies, behavior, employment, dating and relationships, higher education, independent living, and MORE.  Seriously, Folks: Just glance through this Workshop Schedule (Click HERE) and you can see why I wanted to clone myself.  I wanted to attend all of them!
Travis and I touched down in Phoenix on a beautiful 115 degree summer day - Oh!  Don't worry, it's a dry heat (Mmmm Hmmmm...) - and the rental car agent handed Travis the keys to a Dodge Charger.  He slid across the hood, and lowered himself in through the window and we were off!

Just'a good ol' boys
Never meanin' no harm...

When we arrived at the JW Marriott Desert Ridge, I was blown away by what a beautiful resort it is.  My pathetic cell phone pictures don't do it justice; it was first class all the way!
Footloose and child-free, Travis and I got down to the business of vacation!  We set off to explore the resort - particularly the pool.  Let's face it, the pool is the only place you want to be on a 115 degree day.
In the evening, the NDSC had events and mixers planned - some were for parents, others for kids.  But even just hanging out in the hotel lobby provided a great opportunity to meet all sorts of wonderful members of the Down syndrome community.  The lobby was where I got to meet my Down syndrome sibling idol, Dr. Brian Skotko (I've blogged about his work HERE, HERE and HERE).  The sight of him got me truly starstruck.  After some encouragement from Travis, I walked up to his table and blurted out "I love you!"  Yes, my nerves got the better of me and I led with a proclamation of a total stranger...followed by an introduction to my husband.  It was all kinds of awkward.
It was also in the hotel lobby where Travis and I had the pleasure of striking up a conversation with this lovely lady, Global Down Syndrome Ambassador, DeOndraDixon.  You may recognize her from Jamie Foxx's "Blame It" video (Click HERE).  Jamie Foxx is a Down syndrome advocate as well, and he's DeOndra's brother.  In addition to having killer dance moves, DeOndra is smart, sassy, and downright hilarious!  She took a liking to Travis and complimented my taste in men.  Then she reassured me not to be threatened because she doesn't pursue married men.  Good to know, DeOndra.  Let me tell you, Folks, I could have hung out with her all night!  I hope our paths cross again.
And while I didn't actually get to meet him, the one and only Tim Harris was at the convention.  He gave a phenomenal speech - talk about a gift for public speaking and engaging a crowd.  You can read more about Tim HERE.

I met so many other incredible people - too many to reference individually - but one more stuck out in my head.  Her name was Mary Therese and she was a young lady with Down syndrome.  She came and sat across from where Travis and I were seated in the lobby while her Dad used the restroom so we struck up a friendly conversation with her.  She was poised, articulate, and just lovely.  When her dad returned, we introduced ourselves and he remarked how it's so nice to be in an environment where he could leave his daughter to strike up a conversation with strangers and not have to be the least bit concerned about it.  What a beautiful thing about our Down syndrome community gathering at the resort for the weekend.  He told us all about Mary Therese - from learning about her diagnosis to the changes he and his wife made to ensure that she had the best education possible - including purchasing a house in a different school district.  They fought for Mary Therese to be included in the mainstream classroom before that was common practice.  Every weekend they worked with Mary Therese on the curriculum for the upcoming week.  It was so inspiring to hear of a family so devoted with such faith in their daughter, disability notwithstanding.  Mary Therese reminded me of an older version of Josie - they seemed to share personality traits - and that made me smile.  We parted ways but all the way to dinner that night, I talked about Mary Therese and how wonderful it was to meet her.  She touched my heart.

Me with my wonderful friends Kristin and Michelle

It might sound strange but being in a resort with so many chromosomally enhanced individuals and the families and professionals that are so devoted to this community was my utopia.  If we could all just move into the JW Marriott and live together forever, it would be so joyous for me.  These are my people.  We're all members of the same club and it's a privilege for me.
I attended all sorts of awesome workshops and while it was difficult to pick a favorite, I would have to say that if I ever have the opportunity to see Dr. Dennis McGuire speak again, I'm going to jump on it.  Dr. McGuire specializes in adults with Down syndrome and he was so funny and absolutely spot-on in all of his points.  My favorite story that he told involved his wife running to the grocery store to get some food for a morning meeting she had at her office.  There was a young lady with Down syndrome bagging her groceries.  His wife was running late and she became a little impatient with the bagger's slower pace so she grabbed a few items from the belt and started shoving them in bags to try and help expedite the process.  The young lady with Down syndrome looked up with the most offended expression, stopped what she was doing, and said "YOU PEOPLE are always in such a rush!" with an exasperated sigh.  It was priceless because the bagger was right - ultimately, us chromosomally deprived people are the misguided ones - not the other way around.    And when you've been a part of the Down syndrome community as long as I have, it starts to make so much sense!
My other favorite aspect of the conference - and something I must completely commend the NDSC for - were the workshops focused on adult siblings.  To be in a room full of adults of all ages who are interested in the same topics was so incredible.  They even gave us an incredible "Adult Sibling Toolkit" packed with information about financial planning, adult transition, employment, mental health, and other important topics.

  I was part of a sharing session led by Embry Burrus, a speech and language pathology professor at Auburn University and an adult sibling of a big sister with Down syndrome. Ms. Burrus just lost her mother this year and her sister, Margaret, came to live with her.  The experience was so new and raw for Embry, but her honest insight into the adjustment was so inspiring.  I was  moved to tears.  After the sharing session, I went up to speak to her and to thank her for leading the session and for openly sharing her story, and she gave me a copy of her book,  Mama and Margaret.  It's a sweet and funny memoir detailing her and her sister, Margaret's, upbringing in a traditional Southern family.  Their mother was a strict, no-nonsense, "Steel Magnolia" who was a fierce advocate for Margaret in an era before resources were widely available to guide new parents of children with Down syndrome.  The book is filled with funny and heartwarming anecdotes.  If you're looking for a fun and touching read, check it out.  I hope someday Ms. Burrus will write another book about becoming Margaret's guardian and the adjustment that followed.
And of course I would be remiss not to mention the epic dance that is the highlight of the conference for all involved.  Growing up in the Down syndrome community, I've had the good fortune of attending a few similar dances in my day and I know the excitement they can generate.  Talk about a room full of uninhibited party animals, where no one is a stranger, and fun is the only goal.  It's an unforgettable experience.  Dance like nobody's watching, Folks. 
In case I haven't been clear, let me summarize with: 

The Top 4 Reasons Why All Members of the Down Syndrome Community Should Attend A NDSC Convention:
1.  Fellowship - Spend the weekend at a beautiful resort full of people who are rockin' an extra chromosome and those that love them.  Make friends.  Network.  Share stories.  Be inspired everywhere you turn.
2.  Learning - This is the place where the latest information and resources about Down syndrome are disseminated.  The leading experts in the field are here to give you all the knowledge you need to help your loved one with Down syndrome lead the most healthy and fulfilling life possible.
3.  Resources - A whole section of the hotel was converted to an exhibit hall where vendors distributed information and resources customized for people with Down syndrome.  Learn about organizations devoted to helping individuals with special needs, higher education opportunities, health and fitness gear, and academic materials and more - all in one spot!
4.  Fun - Some conferences are stuffy and boring that just drag on and on.  You know what I'm talking about - where you spend an exorbitant amount of energy strategizing how you can sleep while looking like you're thoroughly engrossed in the presenter's lecture?  This isn't like that AT ALL!  It's a fast-paced, dynamic, high-energy weekend.  It will wear you out in the best possible way - kind of like having kids.  And when it's all said and done, you reflect on that whirlwind and you think 'Boy!  That.  Was.  AWESOME!' and you start planning when you an attend your next NDSCC.
Let me conclude by thanking my wonderful husband, who knew how much this opportunity meant to me so he worked his magic at the last minute, after a hectic move into a new house, to get us to Phoenix.  I'd like to thank my dear friend (and Josie's future mother-in-law), Kristin, who persuaded her husband to join in the fun and be Travis' golf buddy all weekend.  Thanks to all of the awesome blog readers and Instagram followers who came up and introduced yourselves to me.  It was a joy to meet each of you.  And the biggest thanks goes to Mama Hop and Aunt Leanne (and Miss Lisa) for spending the weekend lovingly caring for our three babies.  I know it's no small feat and I'm so grateful.

Thursday, August 13, 2015

Parenting in the Information Age: Am I Oversharing?

I know I promised to write about the National Down Syndrome Conference and I have every intention to do so but a topic has surfaced in our special needs blog/social media community and I feel compelled to address it. 

In this life, many people have to search long and hard to find their calling.  However, I've never had any doubt about my calling: I know I was put on this earth to advocate for individuals with Down syndrome.  The blog and Instagram(click HERE) provide me with an incredible forum to do it simply by sharing our story.
Then, a fellow blogger and dear friend sent me a link to this article (CLICK HERE). 

I was forced to stop and question my involvement in the blogosphere/social media realm and reassess whether I'm doing the right thing; is it worth it?
 Carly Findlay, author of the article, is an adult living with a rare skin disorder called ichthyosis.  In her article, it talks about how it makes her uncomfortable when parents "overshare" about their child's disability via social media and the Internet.  She uses the example of when parents share embarrassing details of their child's condition and vent about the burdensome aspects of caring for this child.  She questions how that will make the child feel.  She wonders if she was a burden to her own parents.
 Ms. Findlay makes some very valid points; but I don't think her message is exclusive to people parenting a child with a disability.  Her message is relevant to all parenting in the Information Age.  Anything you share on the Internet may someday be accessed by your child.  Before posting, stop and consider how this will make your child feel.  Is this the type of innocent embarrassing story that all moms happily retell over and over about their children?  Will it be met with a groan or an eye roll from your child or is it something that will make your child question his or her worth as a human being?  Will it make your child feel less loved or wanted?
While Carly Findlay brings up some truly thought-provoking topics related to blogging and sharing personal information, it is my hope that special needs families will continue sharing their stories.  Here's why:

Prejudice is based in ignorance and an overall lack of exposure.  The only way to advance society's perception of individuals with special needs is to allow people to meet and learn about individuals with special needs.  Once the experience is there, comfort levels rise and negative stereotypes are replaced with a genuine appreciation for the individual and the gifts he/she possesses.
 The Internet, with all of its pitfalls, is an incredible tool to help disseminate information quickly.  You may not have had the good fortune to grow up next door to someone with Down syndrome but you can tune into this blog and gain a heartfelt appreciation for Leanne's kindness, humor, and capacity to love.  Your child may not have a classmate with Down syndrome but you can show him pictures and videos of Josie and he can gain an appreciation for her as a fellow 5 year-old who has strengths, weaknesses, perseverance, and lots of attitude. 

And a pregnant woman may be patrolling the internet after having just received a prenatal Down syndrome diagnosis.  She may wonder what impact the diagnosis will have on her other children; on her family.  Amidst the pages and pages of sterile, clinical information, she stumbles upon CCE.  And she sees a female who grew up with a sister with Down syndrome; a female who was so positively influenced by and grateful for that experience that she and her husband started their family by adopting a baby with Down syndrome.  And five years later, here they are - doing all of the things that other families do; living life and loving one another.
I know social media and the Internet can be a powerful forum to truly shape perceptions about individuals with special needs because I've received numerous comments and emails over the years that have reiterated this point over and over.  By simply living our lives and posting occasional photos and sharing our story, we can encourage new parents, unite a special needs community, and promote inclusion and acceptance by welcoming everyone to come discover that we really are "more alike than different."
I hate when I get too verbose but consider this one last point...
In the last two generations, parents of children with Down syndrome (and other special needs) secured the following advances for their children:

1.  Individuals with Down syndrome went from being institutionalized to being brought home and raised with their families
2.  Individuals with Down syndrome were given access to an education

I invite other special needs parents to join me in sharing your stories.  Let's join forces and advocate for our kids.  Let's educate everyone on how enriching life can be when we embrace the diversity of the human condition.  Let's do it compassionately and respectfully. 

And maybe someday I will "hand over the keys" of this blog to Josie and she can pick up where I left off; sharing her own story.  And I'll be proud of the content I contributed and the foundation I built.