The Jack Pot Fund

As Jack's second birthday approaches on May 28th, I would like to take a minute to remind you all about the fundraising program that our family created a year ago, in honor of Jack's first birthday.  As many of you know, The Jack Pot Fund 

was created to benefit our friends in need who are a part of our local Down syndrome community.  The money raised is used to help local families of children with Down Syndrome pay for expensive therapies, medications, or medical supplies that they struggle to afford on their own.  

No child should go without what he or she needs to prosper.

 

What some of you may not know about The Jack Pot Fund is that I started the program in response to recent budget cuts that greatly affected many North Carolina families in 2011.  Prior to July 1, 2011 all exceptional children (with special needs or born prematurely) under the age of three were offered and received necessary early intervention assistance from the state via the Children's Developmental Services Agency, which is part of the NC Department of Health and Human Services.  Well, due to the economic crisis that hit us all in the past couple of years, the state cut budgets in many areas, including the free services that our Jack received, which at that time included occupational and speech therapies.  (Jack did and still does receive physical therapy privately.)

After this change, families went from not having to pay a dime for their childrens' therapies to being responsible for a portion or all of the total cost out of their own pockets after insurance (and many insurance companies don't cover all therapies or the service lines are "out of network" like ours).  The new payment plan for early intervention services is now tiered based on total gross family income, with families having to pay between 20% and 100% of the cost of therapies.  (And, for those of you who are not familiar with or who have never received therapy, an hour of occupational therapy can cost up to $125!)  So, needless to say, this change put a lot of families in a very difficult position.  Many families (including my own) had to make the heartbreaking decision to cut back on some therapies or at least cut back on the frequency of services.  Some even had to go as far as choosing no therapy at all due to the burden of the extra cost.  And, our children need these therapies.  It was this realization that shocked me, that saddened me, that rocked me to the core ... and that made me start The Jack Pot Fund.

After making some adjustments to Jack's therapies following this change, we have managed to figure out a system that has worked beautifully for our Jack.  Don't get me wrong ... it's definitely expensive, and we've had to make some sacrifices we didn't really want to make.  But, Jack is growing and developing in all areas, and every day we count our many blessings for what we have, and we try to not take anything for granted.   

Jack has all any little boy could ever want … he has tons of books and toys, wonderful and dedicated therapists,

and the medicines he needs to stay healthy. 

But not all of his friends do. 

So again this year, in honor of Jack's birthday, we ask that you consider a donation to The Jack Pot Fund to help children with Down syndrome get the help they need and deserve.  To donate online via PayPal, please visit the above link and scroll to the bottom of the screen for instructions.  If you would prefer to donate via mail, please contact me at korey.hickling@gmail.com for more information.

Monetary awards from The Jact Pot Fund are appropriated to families after full review by the DSNGG board, based on intended use and financial need.  I would like to report that our first "gift" from The Jack Pot Fund was recently presented voluntarily by the DSNGG board to a family of a child who was facing a sudden life-threatening diagnosis.  We hope that our gift helped lighten the financial load of unexpected medical expenses for them.  (And, I am ecstatic to also report that this child is currently healthy and doing well!)

All of our love and many thanks to you!

ABLE Act

Saving for our son's future is something that Robert and I talk about almost daily.  All parents worry about saving for college, while we worry about saving for a lifetime.  Realistically, our plans must accomodate saving for three retirements, rather than two.  This is a big pill to swallow, especially since government restraints don't allow us to save money for Jack in an easy way.  (Why, you ask?  Well, we'll get to that in a minute.)

Currently, our family's only legal option for saving for Jack's future has been to open a Special Needs Trust as a means to protect his assets from the penalization of the government.  Now, with the possibility of a new piece of legislation, we just might be able to transparently allocate our assets, without the fear that Jack will not qualify for benefits that he will need in adulthood (like Medicaid, if it's even around when he is 18). 

Because of this new important piece of legislation, I need to ask you all for a favor.

(First, a quick "thank you" to a fellow blogging Ds mommy for bringing this to my attention and for allowing me to repost her words below.)

A piece of legislation is sitting in Congress right now.  It has bipartisan support in both the House and the Senate.  It needs our voices – parents, grandparents, friends, self-advocates – to get going.  Today, April 25, has been designated as National ABLE Act Call-In Day.


The “Achieving a Better Life Experience” (ABLE) act would allow individuals with disabilities to have a savings account that can be used toward living expenses, education, medical expenses, assistive technology, job training, and other supports.

The best thing about this act? The money in this account does not count against the individual’s cash asset limits if he or she is drawing Social Security Disability Income or receiving Medicaid.

This is absolutely revolutionary.


For decades, individuals with disabilities – capable of working, wanting to work – have been forced below the poverty line due to stringent rules regulating SSDI and Medicaid. The cash asset limit in place to continue participating in these programs is an absolute joke, and essentially prevents individuals with disabilities who require Medicaid for health insurance from obtaining meaningful work for meaningful pay. Individuals whose disabilities make it difficult to work a standard 40 hour work week instead must live off SSDI, which is a poverty-level amount.

This act would make it possible for families of individuals with disabilities, and the individuals themselves, to save money in this special account so that they can live a more meaningful life of their choosing. These accounts are meant to supplement SSDI while still keeping the person eligible for Medicaid.


Here are a few more benefits of the bill:


•will be regulated at the federal level so these accounts can cross state lines without problem


•can be held in the individual’s name or in a parent’s name


•money can be used at any point in the individual’s life – does not need to wait until adulthood


•if a family has already been saving money in a traditional savings account, money can be rolled over without penalty


If you’re interested in taking action, there are a few things you can do.


First, check to see if your Representative and Senators are already sponsors of the bill. If they are, send them an email or call them to thank them for their support.

If they aren’t sponsors, send an email or give them a call. You may feel like your rep is too busy to talk to you or read your email. Rest assured that staffers are important players in this, and a conversation with a staffer is still a step in the right direction. Also, each office counts the number of “contacts” they get for or against a bill – so your voice will still be heard! If you need help wording your email or conversation, check out these talking points from the National Down Syndrome Society.


Other ideas:


•If you like to tweet, disability advocates across the country are using the hashtag: #passtheABLEact


•If you are a blogger, consider posting something about the act and rallying others to action.


•If you like to use Facebook, consider posting something about the act.


•If you are part of a parent group, support group, or other disability-related organization – send them the info.


There are a lot of different ways you can let Congress know you support this bill. Ready to take some action?


Thank you for taking the time to read this, and hopefully together we can help make some positive change for those who mean the most to us.

A little this, a little that

The months of March and April are always busy ones for our family ... multiple birthday celebrations and Easter, and then compound those with several celebrations for friends' upcoming weddings.  We've been quite busy, to say the least.

Jack has been busy these last couple months as well, fine tuning some new BIG skills.  Among many others, Jack's greatest recent accomplishment is that he is WALKING!!!!  Finally!  He's not a pro walker by any means, and still prefers to crawl about 15% of the time, but he's definitely doing it consistently.  It's so weird to be washing dishes in the kitchen and catch this little person WALKING behind be out of the corner of my eye.  I still can't believe it some days. 

The word proud doesn't even touch how we feel about this accomplishment!

I've discovered that Jack walks best while barefoot and struggles a bit when in shoes, so I've just been trying to make him wear shoes around the house to get him used to it.  So, persistent walking is a work in progress.  I wish I had a good video of him walking, which I'll try my best to capture soon because all the ones I have now are really poor quality, as they were taken with my phone.  I'll be sure to share a good video as soon as I can though!

Big boy walking

Jack has actually been walking for about 3 weeks now, but we've kinda been keeping it a secret because we wanted to surprise our PT Carrie, who we've missed the last couple of weeks due to holidays and what not. 

So Carrie, if you're reading this ... SURPRISE!!!! 

We know we have PT with you on Monday morning, but we just couldn't hold the news in any longer. 

We're just too excited!  Jack can't wait to show off his walking for you!

Our little baby boy is growing up so fast, and he looks bigger and bigger to me every day.  I can't believe he will be turning 2 years old in less than 6 weeks!  Where did the time go?!?!?  {Tear} 

Here are some photos of our last few weeks for those of you craving recent Jackers pics.  Like I said, we've been busy!

{Warning: Photo overload.)

We had a wonderful dinner with Kristin, Jeff and Carter to celebrate World Down Syndrome Day on March 21st.

The boys with their Daddys

Mommies and their boys

Then, we took a long weekend trip to the Outer Banks to celebrate Daddy and Uncle Chris's birthdays.



Jack with cousins Zack and Brooklyn



Going for a ride on Uncle Matt's shoulders

And as always, Easter was a wonderful day spent with family and friends.

Jack and Daddy in church on Easter

Jack with cousin Brooklyn in front of the Easter flower cross

Cuties

Big boy in his Easter tie from Addison's Closet

(Rarely captured) Family pic

Jack and his biggest fan, Ci Ci

Later on Easter, we satisfied Jack's newest obsession, and played ball in the grass. 

Jack can throw AND (sometimes) even catch the ball.  This kid LOVES to play ball!

Playing ball with great-cousins (and furture babysitters) Mollie and Emma

Ball with cousin Brooklyn



Have a wonderful weekend, everyone!  Love to you all, and we'll be in touch again soon!

Celebrating your Crown

3.21.12

Today we celebrate.

We celebrate life.  We celebrate love.  We celebrate patience.  We celebrate our differences.  We celebrate value.

We celebrate World Down Syndrome Day.

We celebrate YOU, my precious child ...

We celebrate the gift that God gave us when He created you, Jack, and the many other special children with three 21st chromosomes.  And, we celebrate the immense JOY and LOVE packed into that extra little chromosome.

Jack, from the moment you were created, you were meant for special, wonderful things.  You carry more than an extra chromosome, my child.  You carry a light that I have yet to see in any other.  You carry my heart and my soul.

And you wear a glorious, marvelous CROWN ...

On the day that we met and I put you to bed,

I noticed a crown on the top of your head.

It was made up of sparkling, glimmering things

like moonlight and fireflies, and dragonfly wings.

I always knew just what your crown meant.

It said that you were MAGNIFICENT.

... and it means, like a star,

YOU WERE BORN TO SHINE.

With your crown made of glittering, high-flying things,

you've got wind in your pocket, your wishes have wings.

You can run like you mean it ... so, let the wind blow ...

There's just no telling how high you can go!

Whatever it is you choose to do,

no one can do it exactly like you.

Ride on the big slide!  And if you fall down,

remember your glorious, marvelous crown.

It won't flicker or fade.  It won't dim.  It won't leave.

All you have to do is BELIEVE.

Do you, my child?  I hope that you do.

The world is a wonderland waiting for you.

And you get to share it with all your friends, too!

They each have a crown that is faithful and true.

No one's is brighter, no one's is duller.

It's only a CROWN OF A DIFFERENT COLOR.

(from Nancy Tillman's The Crown on Your Head)

We adore you more than you'll ever know, sweet Jack.  We pray that you always know how much you are loved, valued and honored.  Our hearts have been lifted and our lives have been enriched by your presence, by your true colors,

 ... and by the glorious, marvelous crown on your head. 

"Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the CROWN of life, which God has promised to those who love Him."   - James 1:12

End the Word

Apparently, much of America needs to go back to high school English class. As a college English major, one of my biggest pet peeves of all time is poor word choice or word misuse.  Since Jack's birth in 2010, one overly common and improperly used word in particular has roused my attention ... and anger.

You fellow Ds blogging mommies out there know where I am going with this.  (Just sit back, enjoy, and share in my venting ...)

However, for some of you, here I go, climbing up on my good 'ole soapbox again.  Dislcaimer: It is not my intention to sound insulting to the many of you who think carefully before speaking to anyone, especially when speaking to parents and relatives of children with exceptional needs.  But, clearly several people out there could still use some instruction in this department. 

So, here we go ...

How about a little vocabulary lesson, America?

According to the online Merriam-Webster Dictionary, the adjective form of THE word is:

  retarded (adj): slow or limited in intellectual or emotional development or academic progress

No where there does it say "stupid", "ridiculous", "brainless", "dense", "dumb",    "idiotic", "meaningless" or "moronic".  So, why do so many people still use the r-word when describing themselves (or others or situations) as such?

The definition may in some ways describe my son Jack. He is developmentally delayed in some areas, but emotionally and socially he is well beyond his typical peers. And, I have known plenty of "academically limited" people without any medical diagnoses in my time, and no one ever called them "retarded."

The truth about the r-word is that it is no longer even accepted as proper medical jargon to describe individuals with cognitive disabilities. And, when you use THAT word in everyday language to describe someone as "ridiculous" or "stupid," most likely you are (1) offending someone around you (like ME and my son), and (2) you're in fact making yourself look like the one who is "mindless."  The English language prides itself on being a conglomeration of many different languages (mainly Anglo-Saxon Germanic but with hints of many Romantic languages, just fyi ;) ... so there are plenty of other adjectives out there to pick from, people.  Ones that are relevant to your situation at hand, and ones that won't make me cringe and want to high five you {in the face}. 

(Did I actually just type that out loud?!?!? ... Yup, I did.)

My son Jack is many things. 
He is a beautiful 21-month old boy. 
He is happy.  He is healthy.  He is funny. 
He is giggly.  He is loving.  He is giving. 
He is opinionated.  He is smart.  And, he is very cute. 

What he IS NOT is an "idiot" or a "moron." 
And, HE IS NOT A "RETARD."

Yes, Jack does have Down syndrome, but he is also the very air I breathe. 

So, when I hear you or someone else say THAT word, it takes the breath right. out. of. me.

Today, March 7, 2012, is this year's Day to Spread the Word to End the Word.  Please be a fan of RESPECT, and visit this site to pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities.  I beg you to share the knowledge of this movement with all your friends, families and coworkers as well, in a united effort to end the pain that this one little word can inflict. 

Learn it and live it.  Like it, share it on facebook.  Email it to friends.  Blog about it.  Have a private, educational, constructively criticizing (but polite) conversation with a repeat word misuser. 

Be an adult, and stand up for what is right. 
And for the love, please just think before you speak.

Do it for the millions of people out there affected by this word.  Do it for Jack.

To this day, I hear people say the r-word around me and, believe it or not, some still even say it to me without even thinking about the pain they are causing.  At these times, I politely pull these individuals aside to educate them about their poor word choice {misuse} and to tell them that, although I know they did not mean for it to be, it is incredibly offensive and hurtful to me and my family.  Even so, I still continue to witness repeat offenders in my very own life by some of the people closest to me, from coworkers to friends in my social circle.  I know it's "just a word" to you, but if it is "just a word," then just stop saying it.  It's that easy.  To me, that word is offensive.  It is derogatory.  It is NOT COOL. 
And, quite frankly, well ... I'm tired of it.

Jack is my son, who just happens to have an extra chromosome. 

He will continue to grow and learn, and he will be a contibuting member of society. 
He will be respectful, and he will ALWAYS be your friend.

So, please ... be his friend.  And show him and others like him the RESPECT they deserve. 

The NEW R-word = RESPECT

{Exit soapbox.}

Jack Update: Better late than never!

Call it what you will.  Writer's block.  Laziness.  Winter blues.  I wish I could give you good reasons why I haven't posted in so long, but then I'd just be making excuses. 

Oh well .... here they go anyways:

Maybe it's my crazy toddler who keeps me on my toes at all times.  Perhaps it's the fact that Jack's naptime (formerly known as the time I sat down to blog) is now filled with rushing around cleaning up a gazillion toys, goldfish cracker crumbs, dog food and house plant dirt off the floor .... all leftovers of the musings of one gregarious toddler.  Rather, it could be that I've been so focused on getting my little man to walk and talk that I have had little time to report back to you all. 

But ... it's probably just that I get so lost in my baby boy's blues and infectious smiles all day long, that I'm honestly not thinking about you folks all that much!  {No offense.}

For those of you craving an update, though, the truth about our last six weeks is that our little buddy has hit quite a developmental spurt, more like BOOM!

No to brag or anything, but here's a little breakdown of just some of the things our Jackers has been up to:

Standing up from the floor (without pulling up on anything) ALL DAY LONG.

Walking up to 5 steps at a time.  Yup, WALKING!!!  (Not walking across the room yet or anything, but he's close!)

Eating ALL big boy foods, finally!  (Jack had some texture issues, and preferred pureed foods for a very long time.) 

Working on eating with utensils (more like, playing with utensils, but it's a start!)

Saying lots of new words, including dog, shoes, car, ball, bubbles, go, hi, up, and our favorite, "cool!"

Signing probably about ten to twelve different signs, including more, sleep, eat, bubbles, go, dog, pig.

Putting things "in" and taking things "out" of containers, and helping Mommy clean up toys (well, sometimes ... it's a work in progress).

Giving hugs and kisses on command ... AHHHHdorable!

Giving high fives, waving "hello" and "bye bye" to any and everyone, especially in the grocery store. Sigh. ;)

In different news, we have been very blessed that Jack has had a very healthy winter thus far with only one or two minor colds (and NO ear infections, knock on wood).  We feel very fortunate that our insurance approved him for the very expensive seasonal Synagis vaccine (RSV vaccine) last year.  It requires Jack to get a shot in each leg every month during the winter months, which is sad for baby and Mommy, but it's definitely been worth it.  Our pediatrician yesterday told me that the CDC is estimating that nearly 30% of our county's pediatric population has contracted RSV this winter.  Eeeeek!  I'm usually not the biggest fan of insurance companies who, in my opinion, pay for as little as possible when it comes to their clients's health care needs.  But, I've gotta hand it to our company this time for helping keep our little buddy healthy this winter!  Whew!

Other exciting news is that Jack is going to be starting preschool this fall!!!  Last week, our big boy was accepted into a great preschool here in town, and we're really excited about this new beginning for him.  He will go two days per week, from 9 am until 1 pm (hopefully on days that Mommy will be working).  We looked at several preschools and just knew that this one was a perfect fit for our buddy after visiting.  The staff was so welcoming to our family, and they are all very excited to have Jack join them in the fall.  They follow a Montessori-style of teaching, which I've read is very successful with children with Down syndrome.  It seems like the perfect fit for our special little boy, and we couldn't be happier!



Mommy's handsome stud!



"Bieber fever" hair

Well, that's our news for now.  I promise to try to keep you better updated from now on! 

Have a wonderful rest of your week, everyone!



Merry and Bright



So happy to meet Santa!



We had a wonderful Christmas with lots of friends and family!  Jack was a very good boy this year, and so Santa rewarded him accordingly.  Our little buddy racked up on lots of good therapeutic toys, like crawling tunnels and a mini shopping cart to push around, but probably the most useful was our new iPad.  Our speech therapist Jill uses her iPad during her sessions with Jack since they have such great cause and effect and first words games for toddlers, so we thought it would be put to good use in our home.  (Mommy likes to play on it too!!!)

Christmas morning with cousins

Yay!!!  Santa came!

Jack with mommy, two of his aunts and his two newest cousins

The Hickling clan

Family Christmas dinner

Perhaps the greatest gift of all this Christmas was not something you could wrap in a box or hold in your hands, and it wasn't anything Jack received, but rather it was something he gave to us ...

Just four days before Christmas our little man TOOK TWO STEPS!!!  It was during his session with our CBRS therapist Annette last Wednesday.  We had her meet us at my mom's house, since I was there helping her finish wrapping gifts, baking and decorating, so Ci Ci was able to bear witness to our Christmas miracle as well.  And, let me tell you ... there wasn't a dry eye in the house!

Jack has been standing independently without holding onto anything for several weeks now and for longer periods of time with each attempt.  He can stand for about 5 minutes without any help, and he has also stood up from the floor without pulling up on anything several times.  I have had no doubt in my mind that our little guy could walk for several weeks now, thinking that it was just his confidence holding him back from actually doing it.  So, you can imagine how big my heart felt (it nearly burst) when he took two steps all by himself. 

Since this noteworthy day, Jack hasn't taken more than one or two steps here and there, but we know that full-on, independent walking is just right around the corner.  We couldn't be prouder of our little man, as he continues to amaze us day in and day out.  In addition to his increased mobility, Jack also signs several things consistently now, including (but not limited to) "sleep," "Mommy," "Daddy," "more," "all done," "elephant," and "dog."  He definitely understands many other signs without actually signing himself; signs like "music," "dance," "eat," "sheep," "cat," "horse," "cow," and "pig" are among those that he consistently comprehends and responds to.  I can now sign "dance" without saying a word (although I most often do pair the word with the sign to help with his speech), and our little monkey will start moving and grooving.  It's the cutest thing!

We hope everyone had a happy and healthy holiday season, and we wish you nothing but the best in the new year!  Here's a little holiday cheer from our family to yours ...

This year's Christmas card!



Always on the move ... always