Wednesday, October 31, 2012

31 for 21: DAY 31 :: HAPPY HALLOWEEN!!!

"31 for 21" Mission Complete!

We hope everyone had a wonderful, safe and happy Halloween!

In lieu of a fact about Down syndrome, we decided to just end our "31 for 21" campaign with some Halloween cuteness!

Captain Jack Sparrow says ...


"YAAARRR!!!  Happy Halloween, everyone!"

Tuesday, October 30, 2012

31 for 21: DAY 30 :: Just the way you are

Believe it or not, people have said regarding Jack's Down syndrome, 
"But, he'll grow out of it, right?" or "But, there's a cure for Down's, right?"
I am not trying to dog anyone's intelligence or knowledge on the topic or anything, but I do want people to understand that Down syndrome is a genetic condition,
not a disease process.

Down Syndrome Fact of the Day #30:

There is no cure for Down syndrome.

Besides, even if there was a cure for Down syndrome, I am not certain I would take away Jack's diagnosis.
I would still do everything in my power to help him lead the happiest,
fullest, and most productive life possible,
but I would leave my Jack just the way he is.
He is the way God made him, and I (and hopefully you too) love him just the way he is,
and I wouldn't change him for the world.


Mommy loves you ... just the way you are!!!
While there is no cure for Down syndrome, research is making strides in identifying the genes on chromosome 21 that cause the characteristics of Down syndrome.  Because of these advances, scientists now feel strongly that it may be possible to improve, correct, or prevent many of the problems with cognition that are associated with Down syndrome.

Individuals with Down syndrome have an extra copy of their 21st chromosome in every cell of their bodies. There is no way of changing that.

What CAN be changed about Down syndrome, however, is
the way people perceive, treat, and value individuals with Down syndrome.

How others view the diagnosis of Down syndrome, treat people with Down syndrome, and make fun and say things that hurt people like my son CAN be changed. 

My greatest hope in this world is for everyone to see Jack the way we see him. 
And, I hope that these last few weeks of reading this has helped you do so.

Monday, October 29, 2012

31 for 21: DAY 29 :: Future Fears

As you all know well by now, individuals with Down syndrome can face many physical and cognitive challenges throughout their lives.  During my "31 for 21" campaign to raise awareness, I have touched upon many of the difficulties that children with Ds are subject to, not in an effort to make you sad or feel sorry for us, but rather to open your eyes to the challenges people like Jack may potentially face.  In doing so, I hope to enlighten others about Ds so that they may in turn help individuals like Jack become more valued and included in our day to day society.

Medical concerns for people with Down syndrome do not stop during childhood.  There are also problems that adults with Ds may potentially face.  I tend to find it easier to focus on our life one day at a time, but it is difficult to put out of mind one particular problem our sweet little boy might face as he ages ..

Down Syndrome Fact of the Day #29:

One feature of Down syndrome is the development of Alzheimer-like plaques in the brain that generally manifests from about age 40 onward.  This process can potentially result in early Alzheimer-like dementia, memory problems, and gradual decline in cognitive and physical functioning of adults with Ds.

I had heard about this aspect of Down syndrome since Jack's birth, but what was new to me during my research was that this brain degeneration has been observed in the autopsies of virtually all person with Down syndrome of this age and older.  Moreover, I have learned that the National Alzheimer’s Research Plan, published in May 2012, underscores the relationship between Ds and Alzheimer’s disease and includes a focus on improving access to long-term services for younger victims of Alzheimer’s disease, including those with Down syndrome.

While this realization is certainly scary, it also opens my eyes to the efforts being made by professionals to unlock the mysteries still remaining about Ds and to help individuals like our son Jack live the longest and most fulfilling lives possible. 
And, knowing this gives me a glimmer of hope amidst all the darkness.









Sunday, October 28, 2012

31 for 21: DAY 28 :: Sad, but true

Cancer is a topic that no one likes to discuss, but it is one that is close to my heart.  Many family members and close friends have been affected by cancer, with the most difficult being, of course, my father losing his battle with colon cancer in 2004 at the young age of 54.  Cancer scares the living daylights out of me because it is so prominent in my family history. 
Now it scares me even more for another reason ...

Down Syndrome Fact of the Day #28:

Children with Down syndrome have an increased risk of leukemia compared to children without Down syndrome, with the vast majority of the affected cases taking place within the first 5 years of life.

While children with Ds are more frequently affected by leukemia, they interestingly respond better and more rapidly to treatment than typical children do.  Moreover, solid tumors are really rare in people with Down syndrome (leukemia is a blood cancer).  Because of this, some researchers suggest that the extra 21st chromosome in Ds may actually hold many clues in cancer research!  Pretty amazing, huh?!?!

Saturday, October 27, 2012

31 for 21: DAY 27 :: PARTAY Time!!!

Given that we celebrated both the Buddy Walk and Jack's littlest cousin Brooklyn's first birthday today, we are all pretty exhausted around here.  While I promise to have more energy and share more tomorrow, I will take the time to tell you that it was a WONDERFUL day full of celebration for a beautiful cause.  It was definitely the best turnout we have ever had at the Greensboro Buddy Walk, and we couldn't be prouder.
 
  We thank everyone from the bottom of our hearts for coming out to support Jack and others with Down syndrome in our community.  We also thank all the people who made the Buddy Walk possible again this year, including sponsors, vendors, volunteers, family and friends.  You could really feel the love today.  After three years of doing this, it may have been my most emotional Buddy Walk yet, simply because of all the people who made an effort to be there to celebrate our kids.  I just cannot explain my gratitude.  We appreciate all the support we have gotten over the past two and a half years since Jack has been born, and we look forward to many more years of watching Jack blossom together. 
 
We got to top off our day with a great 1st birthday party for my sweet niece Brooklyn and quality family time. 
What a wonderful day it was in so many ways.
 
After I am a little better rested, I promise to share some great photos from BOTH the Buddy Walk and sweet Brooklyn's party, but for now, I must be with my family ... and rest.  :)
 
I will, however, leave you with this ...
 
Down Syndrome Fact of the Day #27:
 
Kids with Down syndrome (and their amazing families) sure know how to have a GREAT time!!!  :))))
 
Also,
HAPPY 1st BIRTHDAY,
SWEET BROOKLYN!!!
We love you, and we're so glad we got to celebrate with you today in more ways than one!  We are one LUCKY family!!!

Friday, October 26, 2012

31 for 21: DAY 26 :: HandiCAPABLE

I have heard from more than one person that adults with Down syndrome have the minds and abilities of "a 12 year old". 

Well, this is NOT the case.

Down Syndrome Fact of the Day #26:

Children with Down syndrome do NOT “plateau”.


Each person with Down syndrome has his or her own talents and unique capabilities, and it is important recognize these and reinforce them.  Learning is a lifelong experience for people with Down syndrome, just like everyone.  Individuals with Down syndrome do in fact learn at a slower pace but nonetheless, continue to learn throughout their lifespan.

Thursday, October 25, 2012

31 for 21: DAY 25 :: Painful Truth

Years ago when babies with Down syndrome were born, a common concern was life expectancy.  While it pains me to discuss this, because I could NEVER imagine my life without my sweet Jack in it, it is something that I have to think about. 
The truth hurts sometimes.

Thanks to advances in medical and clinical treatment and societal opportunities to thrive, individuals with Down syndrome are currently living much longer and fuller lives.  I can only hope that as Jack ages, there will continually be more and more advances being made to help him live an even longer and fuller life.

Down Syndrome Fact of the Day #25:

As many as 80 percent of adults with Down syndrome reach age 55-65, and many live longer.

Research on the topic of life expectancy in individuals with Ds is surprisingly a bit limited; but what I found was quite interesting.  A 1991 study looked at over 12,000 people with DS and found that major medical problems were not a consistent predictor of mortality, which was a common belief.  Instead, self-help skills were the best predictor of life expectancy.  Regardless of these findings, it would be foolish to predict how long a baby born now with DS would live as so many things can change for them medically and socially in the next decades.

While it is important to point out, I try not to dwell on the fact that my son's life expectancy is less than the average, due to obvious reasons.  What I choose to focus on instead is how to help Jack be the absolute BEST Jack he can be for his ENTIRE life...

... and give him LOADS OF LOVE along the way!





Wednesday, October 24, 2012

31 for 21: DAY 24 :: "Defiance"

Not sure if you've ever heard this before, but I have been told that individuals with Down syndrome can be quite defiant.  I don't know how I feel about this.

Honestly, I think that people who are called "defiant" or "stubborn" are just often misunderstood.

Down Syndrome Fact of the Day # 24:

Individuals with Down syndrome are NOT (always :) stubborn.

A child with Down syndrome may not always be able to tell you how he or she feels, so this can easily lead to the false perception that they are stubborn of defiant.  This is not the case.  Behavior is communication, so if you're having trouble communicating with a young person with Ds, consider all of the circumstances. 
Are they experiencing communcation or sensory integration difficulties?

I find that Jack has "tantrums" or acts out with "defiance" mostly when he is frustrated and unable to communicate his needs to me.  (Also, let's face it ... he's also TWO!!!  Ha!  ;)  As frustrating as this can be on the receiving end, I never question my child's intelligence.  Jack's nonverbal cues, whether they're signs or other indications) prove that he KNOWS exactly what is going on around him; it's just his inability to verbalize this understanding that misleads others into assuming that he doesn't.

Tuesday, October 23, 2012

31 for 21: DAY 23 :: What if?

Down syndrome is a lot more common that you would probably think.  In fact, it is the most commonly occuring genetic condition. 

Down Syndrome Fact of the Day #23:

One in every 691 babies in the United States is born with Down syndrome, and there are more than 400,000 people with Down syndrome currently living our country. 

This statistic always makes me scratch my head a little.  It does so because it makes my thoughts travel to some quite dark and controversial places (that I cowardly typically try to avoid).  But this is one case in which I must bring out some "not-so-talked-about" facts surrounding the topic, like the following: 

Of the women who receive a definitive diagnosis that their baby has Down syndrome, some studies demonstrate that approximately 90% of those women choose abortion. 

Now, I won't get into my beliefs and values on this topic here (as my intention is NOT to raise controversy), but I will tell you that this statistic never leaves my thoughts, day in and day out. 
It makes me wonder about a lot of things. 
Specifically, it makes me wonder if the mothers of these unborn children with Down syndrome are receiving  accurate information about what their child's life would be like if they chose to continue their pregnancies. 

Were their decisions truly well-informed? 
Or, like many parents I have personally met, were they blatantly encouraged to terminate their pregnancies based on the diagnosis alone? 
Were they even offered advice from a real mother of a real child with Down syndrome? 
Were they ever given the opportunity to hear from a parent how much JOY their child would bring them, in addition to the challenges?
(Or were they just given a bunch of brochures and statistics and guided to the closest abortion clinic?)

Lastly, I wonder ... what if these parents had chosen NOT to terminate these pregnancies?
How many more individuals with Down syndrome would now be walking among us? 
It is when I wonder about this that I cannot help but think how clear it is to me that these unique and special individuals are supposed to be part of our world.

So glad you are part of our world ...

We were not given a prenatal diagnosis of Ds when I was pregnant with Jack, but when he was diagnosed at birth, my midwife wept while she discussed it with me.  I was the first one to assure her that, had they found Jack's Ds prenatally, we would have still been sitting there on that very day of May 28, 2010, looking upon the face of my beautiful newborn son together.


Monday, October 22, 2012

31 for 21: DAY 22 :: Hypotonia

Many people ask me how Down syndrome affects Jack.  Although there are many differences between children with Ds, because they are all uniquely individual; there are often similar characteristics that most kids with Ds share.  One of these traits, for example, is low muscle tone.

Down Syndrome Fact of the Day #22:

Individuals with Down syndrome generally have decreased muscle tone, or hypotonia.

Hypotonia is a medical term used to describe decreased amount of resistance to movement in a muscle.  In lay terms, muscle tone is the way in which our muscles react to gravity.  It is not a measure of strength or weakness (so you can't increase your muscle tone by lifting weights!).  There is no perfect or completely normal tone, and there is a range from low to high.  Many of us have generally low muscle tone, which is why we often slouch.  Children with Down syndrome generally have quite low muscle tone.  Jack’s hypotonia has always been defined by professionals as “mild” but even so, we have physical therapy every other week to help him reach gross motor milestones that are less challenging for typically developing children with higher tone.

Symptoms of hypotonia include problems with mobility and posture, breathing and speech difficulties, lethargy, ligament and joint laxity and poor reflexes.  This is why many kids with Down syndrome (including Jack) have flat feet and a bit of a sway-back posture.  Children with Ds are usually hyperflexible due to their lower tone and ligamental laxity.  When Jack is tired or sick, you may also notice that he feels a bit “floppy” when you pick him up.  This was more apparent when he was an infant. 

To understand the physical demands placed on children with Down syndrome by low muscle tone, many professionals say to imagine cooking dinner while wearing socks on your hands.  That would be quite challenging, wouldn't it?!?!  Well, thanks to regular physical and occupational therapies, Jack is becoming more and more independent and likewise less frustrated completing daily activities. 

The take away message about hypotonia here is that developing general motor milestones is important for children with low muscle tone, and absolutely achievable; it just sometimes takes them longer.  For caregivers, it is important to encourage ALL skills that other children are doing, but sometimes we have to modify or just provide a little extra help for them to gain proficiency in these skills.  Like any child, practicing these skills helps to build muscle and lays the foundation for later development.



Sunday, October 21, 2012

31 for 21: DAY 21 :: Uniquity

Down Syndrome Fact of the Day #21:

There is a wide variation in mental abilities, behavior and physical development in individuals with Down syndrome.  Each individual has his/her own unique personality, capabilities and talents. 

In other words, people with Down syndrome are not all the same; just like individuals in the typical population are not all the same.  Children with Down syndrome are more alike their typically developing peers than they are different.

Saturday, October 20, 2012

31 for 21: DAY 20 :: Buddy Walk

In just ONE WEEK, the Down Syndrome Network of Greater Greensboro will hold it's Ninth Annual Buddy Walk!

For those of you unfamiliar with the Buddy Walk, it is not just a local event.  Buddy Walks take place all over the country during the month of October to raise awareness and promote inclusion of inviduals with Down syndrome.

Down Syndrome Fact of the Day #20:

The Buddy Walk program was established in 1995 by the National Down Syndrome Society to promote acceptance and inclusion of people with Down syndrome and to celebrate Down Syndrome Awareness Month in October. The name Buddy Walk promotes inclusion between friends of every ability.



This month, over 250 Buddy Walks will take place throughout the United States to celebrate individuals with Down syndrome, like our son Jack. 

Our local Buddy Walk is organized by the Down Syndrome Network of Greater Greensboro (of which I am a proud board member), and it will be on Saturday, October 27th from 11 am until 3 pm at Triad Park in Colfax, NC.


We would love for your family to join us and walk with "Jack's Pack" this year! 

If you are unable to walk with us this year but still want to show your support, please consider a donation to the Down Syndrome Network of Greater Greensboro in Jack's honor.  Thanks!




Friday, October 19, 2012

31 for 21: DAY 19 :: Independence

When we learned of Jack's diagnosis of Down syndrome, I must admit that one of the thoughts that ran through my head was, "Does this mean that he is going to live with us FOREVER?!?!?"  It certainly could mean this, but it might not.

Down Syndrome Fact of the Day #19:

Not all people with Down Syndrome will live at home forever.

In fact, a large percentage of adults with Down syndrome live independently or semi-independently in assisted living facilities and group homes.  Moreover, many adults with Down syndrome often hold jobs and have romantic relationships, including marriage.

Truth be told ... I would be just FINE if Jack wanted to live with us forever.  :)  As I watch him grow, the thought of him ever leaving home actually really saddens me. 

I want Jack to be able to make the decision himself about where he wants to live when he gets older.  If he wants to live on his own, with roommates, or in a group setting, we will do everything in our power to make that happen.  We want to help Jack achieve the most independence possible, as long as that is what he wants.  But at the same time, if Jack decides to stay home with us as an adult, I will certainly enjoy his cheerful company!!!


Thursday, October 18, 2012

31 for 21: DAY 18 :: Valuable

One of the misconceptions about Down syndrome that particularly frustrates me is the idea that adults with Down syndrome are not able to hold jobs and be contributing members of society.  This is just not so.

Down Syndrome Fact of the Day #18:

People with Down syndrome ARE employable.

In fact, many businesses actively seek young adults with Down Syndrome for a variety of positions.  They are being employed in small and medium sized offices, by banks, corporations, nursing homes, hotels, and restaurants.  They work in the music and entertainment industry, in clerical positions, and in the computer industry.  People with Down Syndrome are very valuable employees, as they bring to their jobs enthusiasm, reliability, and dedication.

Among our biggest aspirations for Jack's future is for him to be able to hold a job, if he decides that he wants to do so.  Now, we realize that Jack won't become a doctor or a lawyer, like many parents dream for their children.  But, who cares?!?!?  They work too long of hours anyhow.  (And besides, I know TONS of people without Down syndrome who could also never be doctors or lawyers!!!)

Jack will be whatever he chooses to be, and he will be GREAT at it. 
And ... he will SMILE the whole time he does it!

I mean, who wouldn't want to hire this guy?!?!?

Wednesday, October 17, 2012

31 for 21: DAY 17 :: Family Traits

Individuals with Down syndrome often share some common physical traits, but they do not all look alike.  Yes, they each have three 21st chromosomes, but ALL of their chromosomes (even the extra one) are made up of genetic material they have inherited from their parents. 

Down Syndrome Fact of the Day #17:

Despite physical similiarities, individuals with Down syndrome look more like their parents than they look like other people with Down syndrome.

A few of the common physical traits of Down syndrome are low muscle tone, flattened nasal bridge, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm.  Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.

When Jack was born, my mom and sisters could not get over how much he looked like me when I was a baby.  Yes, Jack does have a single palmar crease and decreased muscle tone, both characteristics of Ds, but he also got my blonde hair (okay, well I used to be blonde!), my blue eyes, and my small nasal bridge.  I definitely see quite a bit of Robert in Jack as well (particularly in his bright smile :), but I am mostly told told by others that he "looks just like his Mommy".  :)

Down syndrome or no Down syndrome, it is apparent who his parents are. 
Jack may have gotten an extra chromosome when he was conceived,
but ALL 47 of them are from US!!!

Here is a photo of me with my dog, when I was about Jack's age

Can you see the resemblance?


Tuesday, October 16, 2012

31 for 21: DAY 16 :: Perspective

When parents learn that their baby has Down syndrome, they react in a number of ways.  Some cry, some pray, some are completely "okay" with it.  Regardless of the reaction and regardless of how much a parent LOVES their baby with Down syndrome, I think everyone goes through a little bit of "Why me?".  And, in times of particular stress, I feel that it is pretty normal for some parents to wonder, "What did I do to deserve this?"  I would be lying if I said I hadn't wondered these things myself from time to time. 

Down Syndrome Fact of the Day #16:

There is no known way to prevent the Down syndrome, and nothing that a parent did or did not do during the pregnancy causes a baby to have Down syndrome.

The more time I have with Jack, the more I realize that Down syndrome isn't something that happened to me; it is something that happened for me.  And, I believe it happened for a reason.

Before Jack was born, I was way more impatient and intolerant than I am now.  I judged a little too quickly, and I hastened through life without recognizing the beauty in the small moments. 

I needed the baby I was given, to give me a newer and brighter perspective on life that I had been unknowingly lacking all along.

Ray of sunshine

Monday, October 15, 2012

31 for 21: DAY 15 :: Extra Chromosome Love

We often get comments like, "Jack doesn't really look like he has Down's" or "his Down's is really mild, right?!?!"  While I understand what you are trying to say (that my kid is adorable and appears to be high functioning ;), it can be a little irritating to hear these things. 

Let me clarify a little ...

Down Syndrome Fact of the Day #15:

Someone with Down syndrome HAS Down syndrome in every cell of their body.  They CANNOT only have a "little bit of Downs".  

Furthermore, it's okay if Jack looks like he has Down syndrome, because {*NEWSFLASH*} ... he DOES have Down syndrome!  So, therefore it's actually not a compliment when somebody tells me that Jack doesn't really look "that Downs".  In fact, it's actually a bit rude. 

Are you saying that Jack would be cuter if he didn't have Down syndrome? 
Are you implying that he would be less valued if he looked more like he had Down syndrome?
That's like saying that someone's gray hair doesn't make them look that old, or that someone is not that fat. 
So, you can see why it hurts our feelings a bit. 

   Jack has an extra chromosome, and although it does not define him,
it is a part of who he is. 
And, we LOVE every bit of it!

Spreading the extra chromosome love!

Sunday, October 14, 2012

31 for 21: DAY 14 :: Beyond Ds

I just spent the majority of my day wondering how I got so lucky to be married to the man to whom I am married and to have the son that I have.  Being that I had such a wonderful time hanging out with my "main men" today, I hope you can understand why I don't really feel much like talking much about Down syndrome. 

The reason why is that Down syndrome does not dictate our life.  It influences it a bit, but by no means does it define our family.  We wake up and go about our days just like anyone else does.  The greatest difference between our life and most others' is that when they go to lunch or play dates, we're most likely headed to a therapy appointment. 
Big whoop! 

We definitely still have plenty of time for A LOT of fun

See?????


Down Syndrome Fact of the Day #14:

While individuals with Down syndrome need additional assistance to achieve many of the same milestones as typically-developing people, they are capable of reaching extraordinary goals and living very full and happy lives.


REALLY full and REALLY happy ...

Saturday, October 13, 2012

31 for 21: DAY 13 :: Future Generations

In case you were wondering, couples with Down syndrome can and do get married.  However, it is unlikely for them to ever have biological children together.

Down Syndrome Fact of the Day #13:

Males with Down syndrome are usually unable to father children, while females demonstrate significantly lower rates of conception relative to unaffected individuals.

Women with DS are less fertile and often have difficulties with miscarriage, premature birth, and difficult labor.  Men with DS are almost uniformly infertile.  There have been only three recorded instances of males with Down syndrome fathering children.

Now I know it probably seems a little odd to be talking about my child's potential for procreation while he's only 2 years old, but being that Jack is a little different, it is impossible to not think about what the future holds for him.  While it used to make me a little sad knowing that Jack will never experience fatherhood, I soon realized that many adults without Down syndrome are unable to have children biologically.  No one can ever predict exactly how things will go in their lives, especially with the added complication of special needs.  Jack's inability to father a child, however, just so happens to be the one thing we can predict about Jack's future. 

So, Jack will not be a father to a child, but we are certain that he will be the greatest son, grandson, uncle, nephew and cousin in the whole, wide world! :)

Friday, October 12, 2012

31 for 21: DAY 12 :: Health Matters

I am sure that many of you already know this, but for those of you less familiar with Down syndrome, I want to take a moment to point out some of the health problems that are associated with the condition. 

Down Syndrome Fact of the Day #12:

Many children with Down syndrome have health complications beyond the usual childhood illnesses. 

Approximately 40% of children with Ds have congenital heart defects.  These children also have a higher incidence of gastrointestinal abnormalities.  They are generally at more risk of infection, and can have respiratory, thyroid, dental, vision, and hearing problems, among other medical conditions.  Despite this daunting list of possible ailments, children and adults with Down syndrome can lead very healthy lives with appropriate medical care, nutrition, and healthy habit-forming. 

We have been incredibly fortunate that Jack did not require heart surgery or any other type of surgery as a baby, and we count our blessings every single day for that.  A number of Jack's little friends, both with and without Down syndrome, have undergone heart repairs and other surgeries, and thanks to medical technology, they are now thriving.  I feel obligated to point out here as well that with added health concerns comes obvious added stress on parents and caregivers of children with Down syndrome.

We know that we are certainly not out of the woods with potential health issues in the future with Jack, and he does have little health "quirks" that we deal with (GERD, for example), but we feel fortunate that he has been a pretty healthy kid thus far. 

We thank God every day for your health, little man, and we pray continuously for you to live a very long and full life! 
Keep it up!




Thursday, October 11, 2012

31 for 21: DAY 11 :: Unlocking Potential

It irritates me when people underestimate my son's abilities.  Not that this happens often or anything, but it has happened, and I am sure it will happen again.  Because Jack has Down syndrome, his speech is delayed in comparison to typically developing children, and others have difficulty understanding what he is trying to communicate (through either speech or sign language).  It is an unfortunate truth that when people cannot understand someone's speech, they tend to underestimate that person's abilities.  This is sad, but so, so true.  And, it is one of the things that is most difficult on parents of children with cognitive delays.  It is particularly difficult when I know that Jack is indeed a very bright and intelligent little boy with LOTS of things to say and do. 

He just happens to say and do things in a different way than most others.  
It's not that he can't.

Down Syndrome Fact of the Day #11:

People with Down syndrome do not have severe cognitive delays.

The truth is most people with Down syndrome have cognitive delays that are mild to moderate.  Moreover, according to many professionals, IQ is not even an adequate measure of the functional status of people with Down syndrome.  Individuals with Down syndrome have great potential if given adequate opportunities and support.

We know that Jack is incredibly smart and has unlimited potential that we cannot wait to unlock as he grows and develops further.  The greatest thing anyone can ever do for an individual with a physical or cognitive disability is to cultivate and celebrate their strengths, and challenge them to reach all of their goals, no matter how lofty they may seem.  We know Jack can do anything he wants to do.  He just may need a little more help and support to do so. 

"I would never underestimate you. 
Can you return the favor?"

Wednesday, October 10, 2012

31 for 21: DAY 10 :: Inclusion and Moving Forward

We recently dealt with some issues at Jack's preschool that I have not yet shared with everyone.  I really don't want to get into it all the details in such a public arena, but I will tell you that we have taken Jack out of the preschool he started in the beginning of September.  We did this for many reasons, one being his separation anxiety and difficulty adjusting to the classroom, but mostly because we simply felt that the school was not right for Jack.  We plan to give Jack a break from school for a while, in hopes that he forgets about his negative experiences there (he was very unhappy there and would cry nonstop, which broke everyone's hearts).  We are going to take our time over the next couple of months to explore other options and find the place where Jack can most succeed. 

The entire experience made me wonder more about inclusion, and what it means for a program to truly be "inclusive".  It definitely means more than just saying your program is "inclusive", that's for sure.

Down Syndrome Fact of the Day #10:

Children with Down syndrome today are included in regular academic classrooms across the country.  Students with Ds may be integrated into specific courses or fully included in the regular classroom for all subjects. 

When speaking with a friend about our recent preschool experience, she asked me, "What exactly is inclusion?"  So, I thought I would take a moment to explain.  Inclusion is a philosophy of education based on the belief in every person’s inherent right to fully participate in society.  It implies acceptance of differences and access to the educational experiences that are fundamental to every student’s development.  When effectively implemented, research has demonstrated academic and social benefits for all students - both those who have special needs as well as typical students.  Friendships develop, typically-developing students are more appreciative of differences and students with disabilities are more motivated.  True acceptance of diversity will ultimately develop within the school environment and is then carried into the home, workplace, and community. 

Whereas taking Jack out of preschool was not the ideal situation, we absolutely had to do what was BEST for our son.  The school was simply not the right place for our Jack.  It was definitely one of the more difficult things I have had to do since Jack was born, but it certainly taught me a lot about the world as others see it and more than I already knew about the world from the eyes of mom with an exceptional child.  Like many lessons in life, I was reminded that there will always be things in the world we are unable to change, no matter how hard we try.  So, rather than dwell on our negative experiences, we are going to use this as an opportunity to learn and move forward, on to more positive places in our life. 

Wish us luck!!!

Looking forward to new beginnings!

Tuesday, October 9, 2012

31 for 21: DAY 9 :: The Dreaded "R word" (again)

I am sure you all have heard this before, and are probably tired of me beating a dead horse by now, but sadly I must write about it once again. 
Yep, it ... the R WORD.

You see, it seems that no matter how many times I rant about how hurtful the word "retarded" can be to me, to my son, and to my family and friends; no matter how many celebrities have to publicly apologize for "accidentally" saying it in interviews; no matter how many times critics slay filmmakers for using the word in their movies; there will always be individuals in this world who just plain don't get it.  
(Either that, or they are just plain mean and heartless.) 

I don't think I need to go into my whole spiel again about my thoughts on THE WORD, because I am sure most of you loyal followers know exactly how I feel about it, and I am sure most of you share my sentiment on the topic.  However, I must get something off my shoulders. 

Thanks to Ann Coulter, my topic for today's Down Syndrome Awareness Month blog was very easy to contrive!  Yes, my friends, the lovely Ann Coulter, conservative political commentator, just couldn't help herself and tweeted the following recently:

   "Been busy, but is Obama STILL talking about that video? I had no idea how crucial the retarded vote is in this election.”

Really?!?!  Yes, really ... she did it, friends.  She threw out the R word right then and there, without ANY caution or hesitation.  Now, I know that she gains her popularlity by being inappropriate and always crossing the line, but when exactly did being just plain hurtful and heartless become acceptable?!?!

I WILL refrain from getting into my political views on a public forum.  I believe the true issue here evades politics altogether.  No matter what side of the political aisle you sit on, using the R word in an intentionally derogatory way is NOT acceptable!

What I will NOT refrain from, however, is doing something about this. 

I encourage you to read this wonderfully written article by Dan Niblock, a father who lives in Durham and has a son with Down syndrome.  He is demanding an apology from Ann Coulter, and I encourage you to join him, me and other moms out there in spreading the word about her inappropriate and hurtful words. 

Oh, and in case you didn't know, because the term was being so misused by our society, the term "mental retardation" has even been replaced in the medical community with the word "intellectual disability."  This was done in an effort to help thwart the derogatory nature of the R word that our society has imposed over years of misuse.  So, if doctors aren't even using the word now, why should we?!?!?

Down Syndrome Fact of the Day #9:

On October 5, 2010, U.S. President Barack Obama officially signed bill S. 2781 into federal law.  This bill called "Rosa’s Law" (which takes its name and inspiration for 9-year-old Rosa Marcellino) removes the terms “mental retardation” and "mentally retarded" from federal health, education and labor policy and replaces them with people first language “individual with an intellectual disability” and “intellectual disability.” The signing of Rosa’s Law is a significant milestone in establishing dignity, inclusion and respect for all people with intellectual disabilities.



Monday, October 8, 2012

31 for 21: DAY 8 :: "Times they are a changin"

Times are changing.  Because of advances in technology and medicine, individuals with Down syndrome (in addition to many other genetic disorders) now live longer, healthier, and fuller lives. 

Down Syndrome Fact of the Day #8:

As many as 80 percent of adults with Down syndrome live to age 65, and many live longer.

The truth is, however, we never know how long any of us will live.  Something could happen tomorrow and change everything.  My father didn't have Down syndrome, but he did have cancer, and it took his life at the early age of 54. 

Given that the life expectancy for the average male is currently around 76 (I think), age 65 does seem a little young.  But, I refuse to dwell on this part of the equation.  I dwell on the fact that medicine and technology continue to advance, and that my boy will have more chances than ever to prosper in the coming years.  I dwell on the fact that I, like anyone, should relish every single day we have with our loved ones.  I believe that there is a reason we are all put here on this Earth, and I especially believe that about my dear son Jack.  Big things are coming in your lifetime, my sweet boy, I just know it!

You will always be my HERO, at any age!

Sunday, October 7, 2012

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!  :)

Saturday, October 6, 2012

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.

Friday, October 5, 2012

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!



Thursday, October 4, 2012

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"!




Wednesday, October 3, 2012

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.

Tuesday, October 2, 2012

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?!?!?