31 for 21: DAY 7 :: Myth Buster

Whoever told you that people with Down syndrome are always happy was apparently NOT in the grocery store with us a few weeks ago ... when I literally left about $150 worth of groceries right in the middle of one of the aisles and ran out with my screaming and kicking 2 year old.  Yep, that's right folks.  Believe it or not, Jack cries, just like any other 2 year old. 

So, I want to take this opportunity to dispel a myth that I hear a lot about people with Down syndrome.

Down Syndrome Fact of the Day #7:

People with Down syndrome are NOT always happy!

Individuals with Down syndrome have feelings just like everyone else in the population.  They respond to positive expressions of friendship, and they are hurt and upset by inconsiderate behavior. 

While Jack is generally a very happy child who smiles and giggles A LOT, he definitely still gets upset at times (and moreso recently since he's at the fun age of 2!  Ha!  ;)  We are very grateful and blessed that Jack has such a great happy-go-lucky demeanor.  However, we want others aware that he is also vulnerable and impressionable just like any other child, and thus he too is capable of having his feelings hurt. 

My sad face :(

 

Now, this is more like it!  :)

31 for 21: DAY 6 :: Grammatical Lesson

You may ask yourself, "Is it 'Down's' or 'Down syndrome'?" 

Down Syndrome Fact of the Day #6:

Down syndrome is named after Dr. John Langdon Down, an English physician who first described the characteristic features of Trisomy 21 in 1866.  People now use the term “Down” syndrome, as opposed to “Down’s” syndrome.  (Dr. Down did not have Down syndrome nor did he own it.) 

Additionally, it is no longer appropriate to describe someone as a "Down's kid".  A child may have been born with Down syndrome, but the condition does not in any way "own" him or her.  Therefore, people first language is most acceptable, i.e. "a child with Down syndrome".

Jack is not a "Down's kid" ... he is just a kid who happens to have Down syndrome.

Down syndrome does not own me.  I own it.

31 for 21: DAY 5 :: Family Threads

I often get asked by others, "So, are you planning on having more children?"  I am not sure if some people are just asking out of plain curiosity about our family plans, or if they're asking because they wonder about our chances of having another child with Down syndrome.  This doesn't offend me, because I get where they are coming from, but I would like to take a minute to educate others on this topic.  (And yes, we would LOVE to expand our family one day when the timing is right! :)

Down Syndrome Fact of the Day #5:

In general, Down syndrome is not hereditary.

Most cases of Down syndrome are of the nondisjunction type (like Jack's case) and are sporadic, chance events.  Only in translocation Down syndrome is it possible for the condition to be hereditary.  Therefore, generally speaking Down syndrome does not run families, and a sibling or an aunt of a child with Ds has no greater chance of conceiving a child with Down syndrome than any other average woman.  This also means that I myself am unlikely to have another child with Down syndrome.  My chances are certainly greater than a different mom (about 1 in 100), simply due to the fact that I already have a child with Down syndrome.  There is little documentation available regarding more than one child with nondisjunction Ds being conceived within the same birth family.

So, now that you know that Down syndrome does not necessarily run in families, I will go on to tell you what DOES run in families.  And that, my friends, is .... 

ADORABLENESS!!!



Cousin bathtime



Oldie but goodie from last summer ... still adorable even though everyone's not smiling!



Proud Ci Ci on the beach last summer with "her seven"



Fun at the Zoo with my cousin Zack!



Jack LOVES his littlest cousin Brooklyn!





31 for 21: DAY 4 :: "But you're so young!!!"

When I tell new people about Jack's Down syndrome, one of the many responses I get is, "But you're so young!!!"  While I know that people are basing their response on their own (limited) knowledge about Down syndrome and I try to give them the benefit of the doubt, it still kind of irritates me to hear this.  Yes, I was 28 when Jack was conceived and 29 when he was born. 

(I know this, people.  Thanks for reminding me of my own age!  Ha!) 

This leads me to your .... 

Down Syndrome Fact of the Day (Day 4):

Down syndrome is not a genetic condition caused by older parents.

In case you haven't realized this yet, Down syndrome does not evade young parents!  In fact, eighty percent of children born with Ds are born to women younger than age 35, like myself, and the average age of mothers of children with Ds is 26.  Research does, however, show a link between advanced maternal/paternal age and the incidence of Down syndrome, which is probably why many people's knowledge is skewed.  Generally speaking, yes, mothers older than 35 have a greater chance of having a child with Ds than a younger mother.  However, more children with Ds are in fact born to mothers younger than 35, because there are simply more children born to mothers under 35. 

Glad I didn't miss out on you buddy, because I was "too young"!

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!!!