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)

Addressing the issue of childhood cruelty in the special needs community

The other day, a friend mentioned that having a child with special needs would always be accompanied by the concern that the child would be made fun of by the other children.  In this day and age of bullying, I would refute that such concerns are not exclusive to parents of children with special needs.  We all know what it feels like to be teased, taunted, and ostracized socially.  To some degree, this is a truly unfortunate "rite of passage" that is associated with growing up. 

 

My heart aches to think that either of my children would be subjected to cruelty from her peers.  However, I'm not naïve enough to think that I can fully protect them from it. 

 

Leanne was made fun of growing up.  She has been called a "retard".  She has been discriminated against and ostracized.

 Admirably, Leanne has exhibited more grace in those scenarios than most people would.  She has a remarkable ability to forgive and move on.  And the most beautiful thing about Leanne is, that she would never do that to another human being.  She is the least judgmental person I've ever met.  Perhaps witnessing the poise and tranquility Leanne exhibited in such situations has provided me reassurance as it pertains to my own children.

 

Another great source of reassurance for me is that things are different now than when Leanne was growing up.  Thirty years ago, people with developmental disabilities were clustered together in a special education classroom in a separate part of the school (or in some cases, in entirely different schools) than their typically developing peers.

 Today, individuals with special needs are integrated into the same classroom setting with their typically developing peers.  There is a huge push towards inclusion and mainstreaming.  As a result of these efforts, typically developing children are getting to know their peers with special needs.  Consequently, the fear and prejudice that result from ignorance and an overall lack of exposure is being replaced with an attitude of acceptance and an appreciation for the value that each individual brings to the environment. 

 It is my hope that instead of people saying "I don't know anything about Down syndrome because I've never really been around anyone with Down syndrome," they will instead say, "I grew up with a friend with Down syndrome named Josie, and she was pretty cool!"  I believe the impact of this could be huge.

In addition to the inclusion movement in an educational setting, today, acceptance of the special needs community is promoted by numerous non-profit organizations, news stories, popular music, and even blogs!

My mom and I were discussing how when we're out in public with Leanne and Josie, the overall reception is one of warmth and kindness.  If people ever stare at us, I honestly do not notice; but I do notice how people smile and greet my sister and my daughter.  (I also notice all the free swag Leanne scores because she's so darn cute and charming!)   

I've always felt like if people had a chance to really get to know my sister or my daughter, that any negative bias about Down syndrome would be replaced by a sincere appreciation for the character traits that make them such wonderful people.  The good news is that this is the direction we are moving in. 

Let's not forget that as parents, we can facilitate this process by the attitude that we project and the example that we set for our children. (More on this later...)

What we can learn from individuals with special needs

We all have our moments where we like to complain that we're tired, frustrated, and stressed out.  I'm certainly guilty of this myself.  In today's fast-paced society, it's easy to get caught up in the assumed urgency of our own concerns.  This inevitably leads to feeling defeated because we can't accomplish everything we want to accomplish as quickly as we'd like to.

 

That's when I need to take a step back and realize what Josie teaches me.  In Josie's world, that fast-paced sense of urgency does not exist.  It cannot exist.  Josie requires more time to attain skills and accomplish tasks that we take for granted.

 Josie's disability does not mean that she can't do things that other people do, it just means that it's going to take her longer to get there.

 And those things that come naturally to those of us without disabilities, are things that Josie has to put forth a great deal of time and energy to learn.

 It's a slow process; one that requires an enormous amount of work on her part.

 But in time, she'll get there.

Seeing her work this hard, for this long, makes me incredibly proud, extremely grateful, and deeply humbled. The fortitude I've witnessed from this child truly highlights how much I take for granted. And when I take a step back and reflect on her journey, I realize how much I can learn from her.

 

Let's add it up: an unwavering perseverance + a positive attitude in the face of challenges that the rest of us could never relate to +  the composure to avoid toxic comparisons + a grace to ignore the inequities = pure admiration

 

I know God purposefully creates people with disabilities.  These people have an ability to impart extraordinary wisdom upon the rest of us.  And if we take away a fraction of what these individuals have to offer, we are undeniably better for it.

Celebrating Small Victories

Josie and her sister, Merryn, are sixteen months apart.  When we became pregnant with Merryn, the timing surprised us a bit.  However, many people within the special needs community, including Josie's therapists, assured us that this was the best possible thing for Josie.  We were told that having a sibling so close in age would motivate Josie to reach her milestones alongside her sister.  Sibling rivalry would be a good incentive for Josie to work harder to keep up with her sister.  We were also told that because I was tending to a baby, I would not have as much opportunity to "baby" Josie, thus, making her more independent and self-sufficient.

However, this theory seemed to have backfired a bit.  As Merryn's gross motor skills began to develop, Josie utilized this to her advantage.  We've all seen Merryn pushing helping Josie in her gait trainer...

...although she doesn't look too happy about it here.

When Merryn began to pull up and cruise along furniture, Josie simply sat back and let Merryn pull toys down for her.

No, not the school bus!  I said the singing dog!  Geez, Merryn - listen!

Josie is delighted to sit and relax while Merryn does all the climbing and heavy lifting!

And the thing about Merryn (and typically developing kids) is that the skills that we've worked tirelessly - for months and months and months - to teach Josie, simply come naturally to Merryn.  She just started pulling up, cruising, and climbing the stairs.  No one really taught her or drilled her over and over with countless exercises.  Admittedly, the contrast between the two can be a little discouraging.

However, all the effort that goes into teaching Josie new skills, and all of the energy spent, and even the discouraging moments, make victory so sweet!  Fast forward to last Friday when I heard Josie whining in the playroom.  I poked my head around the corner to see what the problem was and I saw this:

I shrieked in excitement "Josie!!!!  You pulled up!!!!!"  and I ran and got the camera.  What seems like such a small thing for most kids (I honestly don't remember when Merryn first did it) is a huge step for Josie.  I clapped and cheered and made her do it again!  Then I emailed/texted Travis, her grandmas, and her physical therapist!

Of course this is not demean Merryn's accomplishments in any way.  We are truly proud of her as well.  But Merryn is 10 months old and Josie is nearly 27 months old, so it's taken her that much longer to conquer this skill. 

Small accomplishments are big deals when you have a child with special needs.

Three cheers for small victories!

Now, if she can only figure out a better method of getting down besides standing there whining for someone to come help her.  Stay tuned!

Josie's Going to College

Yes, I realize that she's not even in preschool yet but we're already planning on Josie going on to higher education.  Did you know that all sorts of colleges around the nation have programs for individuals with special needs?  I didn't either - until recently. 

Many colleges have added customized curriculum's designed not only to educate individuals with special needs, but to offer an opportunity to acquire valuable life skills through independent living on campus while obtaining the same social experience that other college students have.  I find this to be an incredible testimony to the way our society now values people with disabilities. 

As parents we owe it all to the generation before us - those trailblazers who brought their babies with special needs home instead of institutionalizing them.  Pioneers like my parents, who advocated for my sister's education instead of keeping her isolated at home without stimulation.  Society has come a long way in terms of our perception of individuals with disabilities and what they're capable of. 

As a result, I have every intention of sending Josie off to college alongside her typically developing peers.  And as plentiful as the higher education opportunities for individuals with special needs are today, I am so excited to see what they will be like in 17 years!

Here are just a couple of links highlighting universities around the nation that offer these types of programs:

1.  Think College - College Opportunities for Individuals with Intellectual Disabilities

2.  20 Incredible Colleges for Special Needs Students

Now, how cool is that?!