04 November 2014

"Uncovering" Talent

I read an article today on leadership published by Deloitte University’s Leadership Center for Inclusion entitled Uncovering Talent: A New Model of Inclusion.  The paper was written with the corporate world in mind but as I read, I found that their model also applies some to my life as a mother to a son with Down syndrome.  The basic tenant of the article centered on a term called “covering”.  Covering is defined by the concept that individuals with known stigmatized identities made a “great effort to keep the stigma from looming large”.  One of the examples cited by the authors was about how President Franklin Delano Roosevelt ensured he was always seated behind a table before his Cabinet entered.  President Roosevelt was not hiding his disability – everyone knew he was in a wheelchair.  However, he was covering, making sure his disability was in the background of the interaction.

The article made me ponder the concept of “covering” in regards to raising a child with a disability, particularly one with Down syndrome (Ds)… what is it about being “different” that people don’t like?  I often find myself reflecting on what it would have felt like to have had a child with Ds born in an earlier decade… a time when my sweet boy would have been called an ugly term like “mongoloid” or an “imbecile” by those closest to us – our friends and family… a time when our trusted doctors would have suggested that he be segregated from our family and institutionalized so we weren’t “burdened” by his differences… a time when he wouldn’t have had the right to a meaningful education provided by educators, some of whom would have likely been neighbors within our own community.  Just think about how parents during those times were required to “cover” for their children because our society was so incredibly far from the concept of inclusion… I’ve even heard extreme stories about how some families would lock children with Ds in their bedrooms when they’d host friends and family so others wouldn’t have to “deal” with them.  I’m glad I live in a different world today when it comes to raising a child with special needs.   

Recently I had someone tell me… “I applaud you for how you and your husband care for your son [with Down syndrome], it must be a lot of work”… my response was “It is a lot of work, but its no less work than it takes to raise our typically developing son, it’s just that we’ve had to focus on different things.  Regardless of how much work it is to be a parent, raising any child is truly a labor of love and I wouldn’t trade either of my children for the world.”  The joy that I derive from even the most insignificant moments of life with my kids is unlike anything else I’ve ever experienced… both of our kids bring different personalities and strengths to our family and the way they complement one another has been an amazing gift from God that touches my heart each and every day. 

For different reasons over the last few years and on a constantly evolving continuum, I’ve pondered the idea of inclusion for children with special needs amongst one another and also amongst their typically developing peers.  The more I’ve learned, the more I’ve felt moved to share the value of inclusion for children like Luke.  Although I didn’t know there was a defined method to uncovering talent by utilizing the axes mentioned below before today, for quite some time now, I’ve been working in an attempt to improve the environment for inclusion when it comes to Luke and how he’s received by others.   

The concept of “covering” is further defined within the article above along four axes amongst which individuals can cover:

Appearance… early on Dustin and I recognized the fact that Luke having Ds would never be a secret… from the moment that he entered the world, his physical features would always be a tell-tale sign to those who looked at him.  It doesn’t mean that he’s any less beautiful, just that while he closely resembles his brother, he also has some subtleties that align him with others who are affected by Ds.  When it comes to mannerisms, Luke has already displayed a natural tendency for affection, especially when it comes to sharing the most incredible hugs and the kid has a strong preference for music… any and every beat he hears seems to overtake his soul and results in bounces, sways, head bobs, rhythmic claps and any other way he discovers to express his particular groove.  I can see how the intensity he feels towards affection and music could possibly be overwhelming to some and while I think it will be important for us to teach Luke how meaningful it will always be for him to be true to himself, there is also value in managing your own personal space and the personal space of others.   

Affiliation speaks to the desire to hide a true identify and a related attempt to negate associated stereotypes.  What I’ve found interesting about the common stereotypes connected with Ds is that they are just that… stereotypes!  One of the best experiences I’ve had as a mother to a son with Ds is watching him exceed the limits that outdated stereotypes have placed on him and others with an extra 21st chromosome.  There is no doubt that Luke has exhibited delays in many areas, some of which could even be defined as significant delays when you compare his progress to others his age on a typical developmental chart, but Luke is ABLE and in a positive, supportive and inclusive environment, Luke will succeed and will maybe even exceed the limits placed on him by others. 

Advocacy… I’ve been fortunate to have joined the ranks of special needs motherhood behind decades of prior parent advocates… others who have paved the way and stood up for the rights of their loved ones affected by a disability or delay.  It’s important to me to advocate for equality and inclusion and I’ve been incredibly blessed with friends and family who have embraced our efforts… our family even had over 20 people drive to Cleveland this past summer to join us for the annual Buddy Walk to support Down syndrome in our community.  I had a Facebook friend who shared nearly every one of my 31 educational tidbits about Ds recently during “October is Ds Awareness Month” and I can’t tell you the number of people who have told me they have a heightened awareness for Ds now that they’ve met Luke… I pray that their interaction with Luke will inspire them to be his advocates as he grows older. 

Association with others who are parents to young children with Ds or those who are parents to children with other special needs has been, at times, the lifeblood that’s sustained me when the goings been rough.  From a personal perspective, early on in our diagnosis, association with others played a key factor when it came to understanding and accepting the role that Ds would likely play in our lives.  Support from others who have stood in our shoes has been invaluable in knowing that we aren’t alone on this journey!!

03 November 2014

Mommy, that girl looks like my brother, Lukie Dukie

It happened.  Last night, Matthew recognized that his brother looked “different”.   

Over the last few years I’ve become friends with dozens of others mothers across the country to children with Down syndrome (Ds)on Facebook.  I’ve also “liked” and “joined” dozens of pages and groups specific to Ds.  These resources have been invaluable to me as I’ve tackled the learning curve associated with becoming the mother to a child with special needs and an enormous side benefit has been the presence of their beautiful children in my newsfeed every day.  I’ve literally watched them grow, take their first steps, communicate via sign, etc. I know about them as individuals and I’ve enjoyed them immensely!   

Last night Matthew was sitting in my lap as I was scanning my newsfeed while we were watching TV and out of the blue he pointed to the photo of a little girl about Luke’s age with Ds on my phone and said “she looks like my brother”.  I was caught off guard and asked him to repeat what he’d said like I hadn’t heard him the first time… more definitively he told me “mommy, that girl looks like my brother, Lukie Dukie”.  I tried to probe him, to see what he’d identified as looking the same to which he responded, “I don’t know”.  I never was able to get him to tell me how they looked alike… he went back to watching TV while my heart sank a little.  He wasn’t derogatory or negative… he was actually quite matter-of-fact.  Ever since our prenatal diagnosis of Luke having Ds (which happened the week that Matthew turned one year old), I’ve wondered how having a brother with Ds would affect him… obviously I’ve always known that Matthew would recognize his brother was different than him at some point, I just never knew when it would happen…

Dustin and I, our friends and family, and Luke’s doctors and therapists (3 of whom are physically in our home every week) openly talk about Ds, it’s a part of our life now and it’s not common for a day or two to pass without someone mentioning the term.  I know Matthew’s heard it a hundred times or more so I’d always just assumed that he instinctively understood what it meant as he’s overheard so many of our conversations.  I let the conversation pass last night but resolved that the next time Matthew mentions someone “looking like his brother” to specifically talk with him about Luke having Down syndrome.  Considering he just turned 3 a few months ago, I’m not planning to go into great detail about what it means but am hoping that providing a name to explain the commonalities between Luke and his friends with Ds will help Matthew to internalize that our family isn’t alone when it comes to loving someone with Down syndrome.

02 November 2014

Thank You Mr. McKay!

I should have posted this months ago... when we participated in the 2014 Northeast Ohio Buddy Walk back in July, Luke had a very special monetary donation to our team, it was from a generous young man who we know as a Jersey breeder from the dairy world who left this comment along with his donation:

"Luke, You are an inspiration to my everyday life. When I look at things you have overcome and always with a smile on your face, it makes me strive to live life a little happier. You and your family are always in my thoughts and prayers."

Sam McKay, I want you to know that this comment has brought me to tears on more than one occasion (today included) and times when I'm feeling down in the dumps, I've come back to this comment to raise my spirits!  Please know that our family appreciates your support and kindness!  Hope we see you soon!!