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!

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.

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.

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.



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.

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! 

Click here to register online.

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!

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!!!