Down Syndrome Diagnosis: Free the Child's Potential

I recently read an article where a mother whose baby had just been diagnosed with Down syndrome describes the experience as falling into a black hole.  She perceived a bleak future with her son; one in which they were both social outcasts.  This mother explained how her Internet research made her feel more defeated by outlining a long list of things her baby probably wouldn't be able to do.

These types of stories make me wish that I could stand on rooftop of my home and beckon everyone in the whole world to come meet my sister and my daughter.  If everyone had a chance to truly experience Down syndrome like I have, a Down syndrome diagnosis would be met with hope; the same type of hope for the future that awaits any other baby that is welcomed into the world.

As I find my way along the journey of parenthood, I am constantly reminded that there are more parallels in parenting children with and without special needs.  The experiences are not identical - but no two parenting experiences are, regardless of a child's needs.  I have been parenting for six years now and I still don't know what I'm doing.  I don't know what any of my children will become.  But I have immense hope for their futures.  I believe each one of them has incredible potential.  

All too often, society measures a successful individual by how many advanced degrees he earns and how much money he makes.  With that standard of measurement, it's easy to see why individuals with Down syndrome are not valued.  It's very clear why the diagnosis is perceived as negative.  However, there is more than one path to a successful and fulfilling life.  Growing up with a sibling with Down syndrome helped me to see that developing our own gifts and using those gifts to help others, striving to attain our highest potential and leaving this world a better place because we were here, and enriching someone else's life because you were in it - that is a meaningful life.  If you use that standard of measurement, the value of my sister's life is inexplicably profound.  The sacrosanct virtue of her life is the foundation upon which my worldview was built.

Because of the impact that my sister had on Travis and I, we welcomed a baby with Down syndrome with immense hope.  We knew that she was filled with potential and that the world would be better because she was here.  And just like with our other children, we are invested in helping Josie achieve her greatest potential so that she can set goals for herself and strive to meet them.  Her path will be different.  Everyone's path is different.  But everyone's path is meaningful.

(Pardon the messy hair)

Waiting for Maturity to Kick in: Down syndrome and Behavioral Challenges

Josie will be six in a couple of months (*sniffle* I think I have something in my eye) and it seems like we're entering a phase of increasingly challenging behaviors.  I have had many friends with children with Down syndrome in Josie's age range frequently complain to me about various challenges including aggressive behavior/hitting, running away, and general defiance/obstinacy/disobedience.  

Josie is certainly not above a little non-compliant behavior.  Take, for example, our trip to the zoo last fall.  Initially, she did fine.  She rode in the stroller with Lydia and looked at the animals.

The attractions maintained her interest for a little while...

...but at some point, she decided she was over the zoo.  You can see it starting to happen in this photo:

By the time we made it to the Desert Dome, Josie was done.  Bring on the whining and adamant "NO!" every time we suggested Josie check out something cool.

When she pulled the umbrella down over her seat and retreated into solitude, it was quite obvious that no amount of effort on our part would extend her interest in this excursion.  

What would have happened had Josie not been in the stroller?  Well, she wouldn't have made it nearly that far around the zoo because her gross motor skills (and inclination) do not allow her to walk great distances.  And once she decided she was done, we would have had a child face down on the pavement in protest.  

Like many of my friends who are parenting children with Down syndrome, I get frustrated by Josie's behaviors.  As a good friend and parenting mentor explained to me, our kiddos have delays so the behavior concerns that affect typically developing children will affect our children, too, however it won't happen until an older age and it may take longer to graduate out of these stages.  

But they are just stages.  And our children will graduate out of these stages.  When I get consumed by the frustration, I stop and remind myself that my sister, Leanne, went through all of this, too.  My mom will testify that getting her out the door for school during her elementary years was not always a pleasant experience (I'm pretty sure when Mama Hop reads this, she will have snorted right about now).  

But look at Leanne today!  She wakes up, gets dressed, eats breakfast, and makes it out the door without supervision and prompting.  She uses the restroom without supervision and prompting.  She does not run away from my mom nor does she flop on the floor in protest.  She exhibits socially appropriate behavior in public.  

Leanne acts like an adult because she is an adult!  Funny what a little maturity will do!

And while we are fortunate to have an older role model for Josie who helps us keep things in perspective, we do have our difficult days just like everyone else.  And we certainly don't claim to have all the answers, nor do we consider ourselves perfect parents by any stretch of the imagination.  

The one resource I turn to when I'm at my wits end is behavioral therapy.  I've blogged before about our struggle to get Josie to end her reliance on her G-tube and to learn to eat orally (to read those posts, click HERE and HERE).  During this time, we sought the help of some incredible pediatric behavioral psychologists who taught us some really simple but effective strategies for encouraging compliance.  Some of the things that we learned seem like such common sense that I'm embarrassed to admit that it took a PhD telling me for it to click.  But I do believe when you're in a frustrating behavioral situation, the stress of it clouds your judgement and inhibits you from seeing it objectively.

That being said, while we wait for the maturity to kick in, here are a few basic tips that have helped us:

1.  First,  ____.  Then, ____ - When we learned this, it applied to eating.  First, take a bite (non-preferred activity).  Then, you receive an incentive (preferred item).  Now, this strategy is used with all of our kids, regardless of chromosome count, and it is a life saver.

For example, if Josie is pitching a fit, not wanting to climb the stairs, I may cue up Taylor Swift on my phone.

First, climb the stairs.  Then, Taylor.

As long as she's heading up the stairs, the music will be playing.  If she flops down, the music stops immediately.  Her preferred item is contingent upon compliant behavior.

* Tip - this strategy is most effective when the preferred item is reserved only for special occasions.  For example, kids love technology.  My kids would walk through fire for some iPad time.  So we keep the iPad restricted and out of reach.  They earn iPad time through good behaviors.  If they had 24/7 access to the iPad, they likely wouldn't have any motivation to clean the playroom to earn it.  Thus, behavioral therapy stresses the importance of keeping a few coveted items restricted.

2.  An ounce of prevention is worth a pound of cure - In other words, it's better to prevent some behavioral problems from happening than to try and fix them once they've started.  Embarrassing story alert: During the whole oral feeding journey, I was complaining to Josie's behavioral psychologist that every time I set the cup on Josie's tray, Josie would throw it.  Guess what she said: "Stop setting the cup on her tray."  Light bulb moment!

You know the problem I mentioned earlier with Josie's tendency to flop on the ground in protest when she doesn't feel like walking?  Prevention: Josie rides in the stroller.  

That's not to say that we don't practice walking obediently by mom's side.  We just don't do that when I'm by myself with 3 kids trying to be somewhere on time.  We practice Josie walking in a low-pressure situation where I can focus on just Josie, or when I have help; and when we're not in a hurry.  Otherwise, she rides in the stroller.

Another example: Josie has sleep problems (I'm sure this will be discussed in a future post).  I found myself in the frustrating nightly ritual of going into her room in the wee hours of morning, taking Josie's books away, turning the lights off, and escorting Josie back to bed.  Then - light bulb moment - we disabled the overhead light in Josie's room.  I can't stop her from waking up at 2am (hopefully her CPAP will stop that), but I can keep her from turning on the lights and hosting her own personal book club at this outrageous hour.  It sure discourages the 2am antics when you can't see!  May as well roll over and try to go back to sleep.  Or shout the alphabet loudly and slowly from your bed.  I haven't figured out a prevention for this yet.

3.  Shhhhhh! - Josie's behavioral psychologist in the tundra taught me this one: We've all been in that embarrassing situation where your kid is throwing a fit in the grocery store because they want something.  And yes, you could abandon your cart full of groceries and walk out, but that's not always practical.  Especially, if you have one of those crazy families that expects to eat and this is your only chance to get to the store.  So if you need to give into your child, to shut her up so you can accomplish a necessary task in peace, first make the child do something for you.  Our go-to is "Shhhhh!" in which the child has to stop whining and shush herself.  I call this "Show me 'quiet'!"  Once the child has obeyed my request, I will honor her request.  That way, the child is not associating victory with fit throwing; she is associating getting what she wants with following mom's directive.  Josie is a BIG whiner so I employ this tactic frequently.

 4.  Tell the child what you want them to do; not what you want them to stop doing - I've heard this is especially important for children with Down syndrome as they tend to be more concrete thinkers.  Back to the cup throwing example - After some intensive professional intervention, I ended up cutting a circle out of construction paper and taping it to Josie's tray.  Instead of saying "Don't throw your cup," I would say "Set your cup on the blue circle."  We no longer have the cup throwing problem and we retired the blue circle.  But we still employ this technique.  For example, sometimes Josie will fight me when I try to fix her hair.  She will wave her arms in the air and try to push the brush away.  So, instead of saying "Stop," I say "Josie, show me 'quiet hands'!"  Quiet hands is a stance a previous occupational therapist taught Josie in which she folds her hands in front of her on the table.  Instead of excitedly reaching for whatever object the OT whipped out of her bag, Josie had to do "quiet hands" to demonstrate that she was prepared to focus and listen to directions so they could begin the next activity.

In conclusion, we can't offer solutions to every parenting dilemma - special needs or otherwise.  (But an ABA therapist is a good place to start.  To find one in your area, click HERE).  However, we can offer hope and encouragement to the parents of our little chromosomally enhanced friends in the form of this kind and charismatic lady we refer to as "Aunt Leanne."   The journey can have it's tough moments but when you look back someday, that momentary frustration will have dissipated into immense gratitude for the enriching experience that will leave you forever changed for the better.

Parenting in the Information Age: Am I Oversharing?

I know I promised to write about the National Down Syndrome Conference and I have every intention to do so but a topic has surfaced in our special needs blog/social media community and I feel compelled to address it. 

In this life, many people have to search long and hard to find their calling.  However, I've never had any doubt about my calling: I know I was put on this earth to advocate for individuals with Down syndrome.  The blog and Instagram(click HERE) provide me with an incredible forum to do it simply by sharing our story.

Then, a fellow blogger and dear friend sent me a link to this article (CLICK HERE). 

I was forced to stop and question my involvement in the blogosphere/social media realm and reassess whether I'm doing the right thing; is it worth it?

 Carly Findlay, author of the article, is an adult living with a rare skin disorder called ichthyosis.  In her article, it talks about how it makes her uncomfortable when parents "overshare" about their child's disability via social media and the Internet.  She uses the example of when parents share embarrassing details of their child's condition and vent about the burdensome aspects of caring for this child.  She questions how that will make the child feel.  She wonders if she was a burden to her own parents.

 Ms. Findlay makes some very valid points; but I don't think her message is exclusive to people parenting a child with a disability.  Her message is relevant to all parenting in the Information Age.  Anything you share on the Internet may someday be accessed by your child.  Before posting, stop and consider how this will make your child feel.  Is this the type of innocent embarrassing story that all moms happily retell over and over about their children?  Will it be met with a groan or an eye roll from your child or is it something that will make your child question his or her worth as a human being?  Will it make your child feel less loved or wanted?

While Carly Findlay brings up some truly thought-provoking topics related to blogging and sharing personal information, it is my hope that special needs families will continue sharing their stories.  Here's why:

Prejudice is based in ignorance and an overall lack of exposure.  The only way to advance society's perception of individuals with special needs is to allow people to meet and learn about individuals with special needs.  Once the experience is there, comfort levels rise and negative stereotypes are replaced with a genuine appreciation for the individual and the gifts he/she possesses.

 The Internet, with all of its pitfalls, is an incredible tool to help disseminate information quickly.  You may not have had the good fortune to grow up next door to someone with Down syndrome but you can tune into this blog and gain a heartfelt appreciation for Leanne's kindness, humor, and capacity to love.  Your child may not have a classmate with Down syndrome but you can show him pictures and videos of Josie and he can gain an appreciation for her as a fellow 5 year-old who has strengths, weaknesses, perseverance, and lots of attitude. 

And a pregnant woman may be patrolling the internet after having just received a prenatal Down syndrome diagnosis.  She may wonder what impact the diagnosis will have on her other children; on her family.  Amidst the pages and pages of sterile, clinical information, she stumbles upon CCE.  And she sees a female who grew up with a sister with Down syndrome; a female who was so positively influenced by and grateful for that experience that she and her husband started their family by adopting a baby with Down syndrome.  And five years later, here they are - doing all of the things that other families do; living life and loving one another.

I know social media and the Internet can be a powerful forum to truly shape perceptions about individuals with special needs because I've received numerous comments and emails over the years that have reiterated this point over and over.  By simply living our lives and posting occasional photos and sharing our story, we can encourage new parents, unite a special needs community, and promote inclusion and acceptance by welcoming everyone to come discover that we really are "more alike than different."

I hate when I get too verbose but consider this one last point...

In the last two generations, parents of children with Down syndrome (and other special needs) secured the following advances for their children:

1.  Individuals with Down syndrome went from being institutionalized to being brought home and raised with their families

2.  Individuals with Down syndrome were given access to an education

Now it's our turn.  What will we do?  Push for access to education in an inclusive environment alongside typically developing peers?  Encourage our kids to pursue higher education at one of the many colleges offering programs for individuals with special needs?  Capitolize on various career opportunities for individuals with special needs?  Dance at our children's wedding receptions? 

I invite other special needs parents to join me in sharing your stories.  Let's join forces and advocate for our kids.  Let's educate everyone on how enriching life can be when we embrace the diversity of the human condition.  Let's do it compassionately and respectfully. 

And maybe someday I will "hand over the keys" of this blog to Josie and she can pick up where I left off; sharing her own story.  And I'll be proud of the content I contributed and the foundation I built.

Down syndrome depicted in Renaissance Art

Today's post is a deviation from the typical anecdotes and photos of Josie, Leanne, and the other chromosomally deprived "co-stars" of CCE.  Instead, we will have a little art history lesson.  Did you know that individuals with Down syndrome are represented in art that dates back to the Renaissance era? 

 

This 16th century Flemish Nativity painting, The Adoration of the Christ Child, may be one of the earliest European depictions of Down syndrome.  The angel on Mary's left and possibly the shepherd in the center of the background are identified as having characteristics of Down syndrome including:  a flattened mid-face, epicanthal folds, upslanted palpebral fissures, a small and upturned tip of the nose, and downward curving of the corners of the mouth. The hands, crossed over the breast, have short fingers, especially on the left.

According to Levitas and Reid, authors of An angel with Down syndrome in a sixteenth century Flemish Nativity painting, the angelic depiction of an individual with Down syndrome was symbolic and may denote that the artist had an affinity for individuals with disabilities.  It also raises questions of the status and value of individuals with special needs in Medieval society.  Or perhaps the physical indicators of Down syndrome were not recognized by society as an abnormality.

 

Andrea Mantegna was an Italian painter who is said to have depicted Christ as a child with Down syndrome in three different paintings.  The child who served as the model was thought to belong to either Mantegna himself, or perhaps he was a child of the wealthy and influential Gonzaga family who hired Mantegna because their child shared the same condition.

 

 

 

Dr. Brian Stratford, a specialist in developmental disabilities at the University of Nottingham, infers that Mantegna and Gonzaga wanted to highlight their shared appreciation of the humanity of children with Down syndrome “Perhaps Mantegna saw in this child something beyond the deficiencies which now so occupy our attention and perhaps then, the qualities of love, forgiveness, gentleness, and innocence were more readily recognized. Maybe Mantegna saw these qualities as more representative of Christ than others we now regard so highly.”

 

To read more about the role of Trisomy 21 in Renaissance art, check out:

 

The New Atlantis At Home With Down Syndrome

 

The Metropolitan Museum of Art The Adoration of the Christ Child

 

John M. Starbuck On the Antiquity of Trisomy 21

 

 

Aunt Leanne and the firm never

Another fun-filled visit from Mama Hop and Aunt Leanne has come to a close and we are so glad that they made time to come see us.  It was really nice to have at least one day of mild weather so that we could enjoy the outdoors at our favorite park (when is Spring coming to stay?! Enough winter already!).

Mama Hop indulged us with her delicious homemade cuisine, and I indulged them with my scrumptious frozen fish sticks a la Schwan's Home Delivery (talk about an emotional goodbye with the Schwan's man...).  Leanne was kind enough to accompany me in taking the girls to the pediatrician for one last check-up prior to our departure.  She kept the girls entertained with some lively song and dance routines while we waited.

Leanne also humored me by participating in yet another photo shoot.  There was lots of goofiness, as illustrated above.

Last night, Aunt Leanne benevolently agreed to babysit the girls (with a little help from our treasured Megan) so that Mama Hop and I could go out to dinner.  In true Aunt Leanne fashion, I got a brutally honest report on my childrens' (mis)behavior while I was gone.  One child got an A+ while the other one was the recipient of the dreaded F+. 

 

It's been mentioned that oral hygiene is one of Leanne's foremost priorities and failure to adhere to a rigid dental maintenance regimen is a major offense in Leanne's book.  So when Josie decided to showcase her stubborn streak during her pre-bed teeth brushing, her beloved Auntie was not amused.  And it's not like Aunt Leanne can relate to this whole stubborn phenomenon.  Apparently her extra chromosome didn't come with any "stubborn".  Uh huh...


After a strict lecture this morning, JoJo was forgiven.  The divas had one final hug/squeeze/I love you/I pray for you session, and Aunt Leanne and Mama Hop drove off into the rain while two sets of big, blue eyes watched through the window.

While the big move is just around the corner, we have one more visit with Mama Hop and Aunt Leanne on the horizon.  This time, it's going to be on their turf, which should be particularly amusing as we haul two toddlers into Mama Hop's domestic gallery of breakable treasures.  Be sure to tune in for that one!

Adults With Down Syndrome: An Inspiring Story

Here at CCE, posts about Leanne and other adults with Down syndrome are among the most popular posts.  I get a lot of feedback from parents of young children with Down syndrome who like to see how much promise the future holds for their children when they become adults.

Meet Tim Harris.  He is an adult with Down syndrome and he owns a restaurant:

He shared his story on The Today Show earlier this week:

Click HERE

Here's another fun video about Mr. Harris and his restaurant:

Click HERE

Thank you, Tim.  You have inspired us with your ambition, energy, eloquence, and unbeatable attitude! 

Gross Motor Progress: The Hokey Pokey

Down syndrome is often characterized by developmental delays and Josie's most significant delay is in the gross motor category.  While she will take a few celebrated steps, walking is still not her main mode of transportation.  Even though we are confident she will be a full-fledged walker someday, the sloooooow pace of her progress is, admittedly, frustrating at times.

Josie's PT brought over a pair of Stabilizing Pressure Input Orthosis pants (AKA "Spanx") and Josie has been wearing them frequently.  They do seem to make her more confident in her movements.   Another major motivator, across the board, is music.  Josie lives for music!

This morning, sporting her SPIO pants, Josie gave a rousing demonstration of her gross motor "skills and abilities" (two big buzzwords for Leanne, hence, a long-standing inside joke here at CCE) in the form of the classic "Hokey Pokey":
Talk about proud!  Girlfriend did her thing!  She braced herself when necessary and when she fell down, she got back up! 

Strangely enough, she kept moving throughout the song almost as though she were on a bike knowing that if she stopped peddling, the bike would tip over.  Travis attributes it to the Law of Inertia - an object in motion tends to stay in motion.  I'm not sure Josie's gross motor delays can be explained by the laws of physics or just a healthy fear of falling combined with a deep-seated need to exert her 2 year-old autonomy by reminding us that she will walk/run/Hokey Pokey when she's good and ready and not a second sooner, thank you very much.  Either way, my heart bursts with pride (and laughter) and Josie's Hokey Pokey skills.  Go JoJo, go!

Survey reveals first-hand perspective of those living with Down syndrome

Down syndrome has been a part of my life since the day I was born.  As much as this makes me feel like somewhat of an expert, at other times it makes me feel completely ill-equipped to explain what the "Down syndrome experience" is like to an outsider.  I've never been an outsider; only an insider. 

Me & my big sister, Leanne

 

Having never experienced Down syndrome from a perspective of shock and adjustment, as a new parent whose child has just received the diagnosis, I try to imagine what the questions and concerns would be.  Perhaps you would wonder how taxing this would be upon you as a parent.  Perhaps you would wonder what kind of an impact it would have upon the child's siblings.  And perhaps you would wonder about the quality of life facing the individual with Down syndrome. 

 

Well, last year a survey was conducted by a physician at the Children's Hospital of Boston and it addresses these three perspectives.

My family on my wedding day.  Leanne was my Maid of Honor (or "Best Woman" as she preferred to call it)

 

 

 

You can read through the findings in full entirety here but the bottom line is that the "Down syndrome experience" is an overwhelmingly positive one for everyone involved - ESPECIALLY for the individuals with Down syndrome!  I challenge you to find any survey of any population of typically developing individuals that reports such astounding happiness and confidence results. 

 

And as for the small percentages of parents and siblings that expressed embarrassment and regret, well, I wonder what that percentage would be if parents and siblings were polled about typically developing family members.  I bet the propensity for negative feelings would be even greater.  There are always small segments of the population that will express discontent at any circumstance;  You know, the "glass half full/poor me/life's not fair" people that are impossible to please. 

So to the outsiders who associate the term "Down syndrome" with uncertainty and fear, here's what us insiders want you to know:  It's a FORTUNATE few whose lives are graced by Down syndrome.  This survey affirmed my perspective that these fortunate few emerge happier, prouder, and more enlightened and we are ultimately grateful for this blessing.

Down syndrome is not a defect

October is Down Syndrome Awareness Month.  The "31 for 21" graphic below symbolizes a challenge whereby bloggers with a connection to the Down syndrome community do an awareness post for each of the 31 days in October (The "21 represents "Trisomy 21" - a.k.a. Down syndrome - defined by an extra chromosome on the 21st pair).

Grab This Button

Knowing how busy my days can be, coupled with the fact that I'll be out of town and away from my computer more than usual this month, I cannot promise to do 31 days of blogging.  However, I am committed to putting forth my best effort to raise awareness about Down syndrome during October and every other month of the year so here goes...

 

True or False: Down syndrome is a chromosomal defect characterized by an individual having a third copy of the 21st chromosome.

 

My big sister, Leanne

 

FALSE!

 

And anyone who answered "True" can come take it up with me!

 

Why?

 

Merriam-Webster defines "defect" as

1

a: an imperfection that impairs worth or utility : shortcoming defect

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2

[Latin defectus]: a lack of something necessary for completeness, adequacy, or perfection : deficiency defect

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There is nothing about my sister (or my daughter) that impairs her worth, completeness, adequacy, or perfection. She is exactly the way God made her and she is perfect just the way she is.



My daughter, Josie

 

I don't claim to be a Down syndrome expert but I do have a lifetime of experience thanks to my big sister and this much I know for sure: People with Down syndrome may have a few characteristics that make them different, but they are by no means defective. 

 

Leanne's life is no less valuable because she learns at a slower pace. The beauty that Leanne brings to this world cannot be measured by how she learns but rather what she teaches. She has taught me what is truly important in life - to see past superficial characteristics and to love others for who they genuinely are. Leanne approaches people with unconditional acceptance. She doesn't care how flawless your complexion is or what type of designer jeans you are wearing. She doesn't care what type of car you drive or how much is in your back account. She's never approached an individual with the attitude of "You'd be so much better if you could only change ___ about yourself". 

 

This pureness of heart is something that I could never come close to achieving, but she reminds me to try. 

 

I believe being around people with disabilities is as close as you can come to God on this earth. I truly do. And that is why I feel blessed to have experienced Down syndrome in my life. 

 

It is not a defect. This much I know.