31 for 21: DAY 3 :: The Day We Were Born

On May 28, 2010 when Jack was born and we learned of his Down syndrome, a flood of emotions washed over me.  As overjoyed I was to be a mom, I was equally overwhelmed, uncertain, and frightened about what our future held with Jack.  I didn't have the "perfect" baby that society seeks in new generations.  Robert and I were well-educated, successful young adults with the world at our fingertips. 

 What do you mean our baby wasn't "perfect"?!?!?!

As the days following Jack's birth came and went, it became easier to cast my fears aside.  At the time, I also tried to learn how to cast aside my desire for perfection.  Because of Jack's Down syndrome, I thought we wouldn't be the "ideal" family I had always dreamt of.  But one night, as I gazed upon Jack's face, I saw my baby's first smile, and I melted.  Right then and there I realized that what I was actually witnessing was PERFECTION in this very moment.  Instead of wondering what others would think about me as the mom of an exceptional child or about Jack as a child with Ds, I realized the TRUTH that Jack actually mirrored everything I had always wanted people to recognize in me ... innate goodness, kindness, and joy.  And, that feeling made my heart nearly erupt. 

From that point on, I made the decision to embrace our new life and not fear it.  Jack was my new purpose ... I was put here on this Earth to be his mom, his teacher, his advocate, and his greatest supporter.  And, he was put here to be my son, my teacher, my greatest supporter, and my inspiration.  

May 28, 2010 was the day WE were born.

I am sharing this with you again, because I was reminded of what it feels like to have a new baby with Down syndrome after watching a video that Robert pointed out to me last night.  ESPN aired this as one of their E:60 specials on October 1st.  It is the story about Heath White, a man who always chased perfection, and his own re-birth after he and his wife had their daughter Paisley, who has Down syndrome.  As a competitve runner, Heath has run 321 miles with Paisley (symbolizing her 3 21st chromosomes) to support her and other individuals with Down syndrome.  This dad went from fearing Ds as a threat to his "perfection" when Paisley was first born, to tatooing "DOWN SYNDROME" across his chest to ensure that others understood that it is always a part of him.  While this family had a prenatal diagnosis of Ds, which is different from us finding out on Jack's birth day, the feelings this father describes after little Paisley was born and after he got to know the "real" her (not the diagnosis) are somewhat familiar to me.  I encourage you to take a few minutes to watch this video and to share it with others.  (Warning:  You'll need tissues!)

As promised, here is your

Down Syndrome Fact of the Day: Day 3

Down syndrome is the most common chromosomal abnormality in humans.  It occurs in every 600-800 live births, and is not related to race, nationality, religion or socioeconomic status.

31 for 21: DAY 2 :: What is Down syndrome?

On Day 2 of Down Syndrome Awareness Month, I thought it might be helpful to simply explain for some people out there what exactly Down syndrome is.  So without further ado, I give present to you

Down Syndrome Fact of the Day (Day 2):

Down syndrome is a chromosomal disorder that happens during conception and is caused by an occurance in cell division resulting in an extra 21st chromosome.

So basically, for an unexplained reason in cell development, each cell in a person with Down syndrome results in 47 chromosomes, instead of the usual 46 chromosomes (23 pairs).  There is an extra full (nondisjunction) or partial (translocation) 21st chromosome, resulting in the medical diagnosis of Trisomy 21.  (Jack has the nondisjunction type of Ds, in case you were wondering :)  This extra genetic material causes changes in the orderly development of the body and brain, as well as the physical characteristics and delayed physical, intellectual, and language development associated with Down syndrome.

Am I rockin' this extra chromosome or what?!?!?

 

31 for 21: DAY 1 :: Down Syndrome Awareness Month

Happy October everyone!  In case you forgot, October is Down Syndrome Awareness Month, and in keeping with my tradition of years past, I hope to support the "31 for 21" campaign again this year by blogging every day this month in honor of our special little guy Jack!  (Wish me luck!  Ha!)

To keep my posts from becoming mundane, I thought I would do something a little different this year.  I hope to post a fact about Down syndrome every day this month (along with some photos full of cuteness, of course!), as my way of educating others about Ds, spreading awareness, and promoting inclusion.  By doing so, I hope to dispel any myths or rumors that may be floating around out there about the diagnosis, about my son, and about families of children with Down syndrome.

So, to kick off Down Syndrome Awareness Month, here's your Down Syndrome Fact of the Day:

Jack and other individuals with Down syndrome are more alike their typically-developing peers than they are different.

See?

On a different note, I want to give a BIG BIRTHDAY SHOUT OUT to a very special little boy!  Jack's cousin Levi turned 3 today!  

 HAPPY BIRTHDAY, LEVI!!! 

We hope you had a wonderful day, buddy!  We miss you and love you, and can't wait to see you again soon!

Also, yesterday Jack's "Pops" celebrated his BIG 6-0!  It was so great to celebrate with you Pops!  Thanks for everything you do for us!  We love you very much! 

HAPPY 60TH BIRTHDAY, POPS!!!

School Daze

Look who started preschool last week!

Jack in his 2-year old classroom.  He looks excited!



With Mommy on his first day of school!



With Daddy

Just walking down the hall like he owns the place!

   Before school started and after receiving advice from other Ds mommies out there, I composed an "All About Me" book and gave it to Jack's teachers at his open house.  I thought it may help the teachers understand Down syndrome a little more and help them see that although Jack does have Down syndrome, his diagnosis does not, by any means, define who he is or what he is capable of.  I wanted to make sure they knew that Jack is more like his classmates than he is different.  I included a section called "Just Jack" which listed little "Jack" things (non-Ds related), like his favorite songs, books and toys.  I also included sections "About Down Syndrome" (facts and myths), "How Ds Affects Jack",  "2012 Goals" (IFSP goals) and "References".  (I was able to find some helpful information about making such a booklet through the Down Syndrome Association of Central Texas's Educator Packet and the Down Syndrome Association of West Michigan's Supporting the Student with Down Syndrome packet.)



Jack's preschool is a small church-based school that he attends just two days per week for 3 hours per day.  We thought that giving him this opportunity would allow him to learn from other typically developing children and provide him with more social interaction and play than he already gets by attending classes with me (like The Little Gym and his music class).  We honestly thought Jack would LOVE preschool, given that he is so social, easygoing, and doesn't seem to know a stranger. 



Well, apparently we were wrong.  I wish I could tell you it's going "swimmingly" but it truly is not.  Unfortunately our little buddy is having a very difficult time adjusting to this new routine.  I have gotten calls two out of three days so far, telling me that Jack has cried unconsolably all morning long (VERY unlike him), and his teacher even recommended that I pick him up an hour early yesterday.  This is breaking my heart, because Jack is typically a very happy-go-lucky little camper who's always up for new things.  He has never cried for 2 hours straight ... not even as an infant. 

Jack's teachers are not as concerned as I am, of course.  They say that some kiddos just have a tough time adjusting and just need extra time to get used to the classroom environment and routine.  We are thinking of doing "half" days for a while, having Jack just go for an hour and a half instead of the full three hours for a few weeks to see if that helps.  Although I fear it may be distracting or unfair to other kids in the class, I also mentioned maybe bringing Jack's beloved iPad, because I thought it might help soothe him to have something familiar in the classroom.  (The teachers have to get approval from administration about this, though.)  Some other Ds mommies who I've reached out to for help suggested maybe me sitting in on the class for about an hour or so a few days to make sure Jack knew that I was there and that everything was okay.  I haven't mentioned this to the teachers or administrators yet and I am not sure if they will allow this, but I guess it's worth a shot. 



We have never experienced Jack having separation anxiety before now.  He spends plenty of time away from me while I am at work, so I know it's not just me.  (But to be fair, when I am at work, he is in the care of others in our own home where he is most comfortable, and there are no other kids around.)  Also, he is around large groups of children a lot because I take him to several classes, but then again,  I am always there with him.  We're thinking that Jack maybe just gets overstimulated with the new group of people whom he does not know or doesn't feel comfortable around yet.  (The weird thing is that he has always done fine with strangers in the nursery at church on Sundays.)  We've also pondered that perhaps this is just an age thing ... I mean, they don't call it the "terrible twos" for no reason, right?!?!  ;)

The truth is, we're not certain what's going on or how to fix it, so I am seeking any advice from other mommies out there who have gone through something similar!  Please comment if you have any suggestions!  Thanks!

Daddy is dropping Jack off at school tomorrow, so maybe it might go more smoothly if it's not ME doing the deed.  We shall see ... keep your fingers crossed for us! 





Jack's 2nd Birthday!!!

Sorry I'm a little late posting these photos, but we've had a busy couple of months!

Our sweet Jack turned 2 on May 28th!  Since that was Memorial Day this year, we waited until the following weekend to have his party, so that all our closest friends and family would be around to celebrate with us! 

Here are some photos from Jack's "Ball, Balloon and Bubble" Party on June 2nd!!!

Jack was a HUGE fan of the bubble machine we rented!

The kids' "fun" table

Little man couldn't get enough of the bubbles! :)

Still smiling even with soapy bubble juice in his eyes!!!

Thanks, Aunt Kelly, for this awesome photo collage!

The dessert spread, complete with "Dum Dum" topiaries and oreo truffle cake pops!  Yum!

Jack's BFF Carter joined us!

Happy boy!  He had a great day!

Carter and Jack enjoying Jack's new sand and water table!  Thanks, Ci Ci!

Jack with his cousin, Emma

And with cousin, Mollie

CAKE TIME with cousins Ford, Wade and Reid!

Ha ha!

It was a beautiful day full of wonderful friends and family who have shown us such immense support over the past two years.  We could not ask for better people to surround ourselves with.  Our little Jack is so very loved!

Thanks to many of you, Jack proudly raised nearly $700 for the Jack Pot Fund!  We really appreciate your commitment to supporting our local Down syndrome network and helping assure that all children have what they need to prosper in our community. 

We love you all very much!

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.