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!!!

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!