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!!

05 September 2014

What is Early Intervention?

If someone asked you to define "Early Intervention" off the cuff... what would you say?
  • Stop something before it starts?
  • Take someone's hand early in a process and guide them towards success?
  • Interrupt an act before a potentially negative consequence ensues?
If you would have asked me to define "Early Intervention" a few years ago, I likely would have come up with one of the easy answers above.  If you were to ask me today, however I'm still not exactly sure how I would respond, but it would be be specific to my experience as Luke's mom and would go something like this...

"Early intervention is federally mandated by Part C of legislation entitled Individuals with Disabilities Education Act or IDEA, which was last amended in 2004 and is executed by the US Department of Education, Office of Special Education Programs.  This legislation passes the responsiblity to each of the 50 states and in Ohio, it's called out in our administrative code, where the Ohio Department of Education then passes the buck [literally] to each of our 88 counties.  Part C of IDEA is what mandates an Individualized Family Service Plan (IFSP) to those with disabilities between birth and the age of 3, when they transition to preschool and graduate to a full fledged Individualized Education Plan (IEP).  I've been studying IDEA and Ohio's Administrative Code pretty heavily lately in an attempt to understand what Luke is entitled to when it comes to developmental and educational services and I must say it's a pretty overwhelming task to try to understand and internalize legal mumbo-jumbo.  I'll continue reading and networking with other parents as I continue my quest to learn how to be the best mom I can be and will update with more on early intervention and how they're helping Luke to meet his full potential in the future!"

Ohio Administrative Code > 3701 Department of Health > Administration and Director > Chapter 3701-8 Help Me Grow Program - [Effective Until 01/15/2015] Early Intervention Individualized Family Service Plan and Service Delivery.

Ohio Administrative Code > 3701 Department of Health > Administration and Director > Chapter 3701-8 Help Me Grow Program - [Effective Until 01/15/2015] Definitions.

25 August 2014

1st Day of Preschool for Matthew

Today was Matthew's first day of preschool... it took some pretty direct questioning on my part, but here is his recap of the afternoon:

"I made a bridge for my truck and trailer.  It fitted.  It was just for me.  I hooked up my truck and tailer and hauled a car over the bridge.  Ms. Ranita read lots and lots of books.  I cried because I missed you.  I rode a 4-wheeler on the playground and it drove me.  I played puzzles, two of them.  They were animal puzzles.  I ate Goldfish and drank all my apple juice.  Me and my friends played with Play-Doh and they drank apple juice too.  That's all we have"

Matthew did cry when we left but his teacher reported that he recovered pretty quickly and he was fine for the rest of the afternoon.  Also, on the way home he got upset because he couldn't see his "pack-pack" (aka backpack) which made him think he left it at school... that also made him cry!  Once he realized it was next to him on the seat he was excited to show us the papers in his folder!  He also shared that he's excited to go back to school later this week!

Way to go Matthew!  You're one awesome little guy! 

19 August 2014

Matthew is 3!

Happy birthday sweet boy!  Meeting you was one of the best days of my entire life and I treasure every moment, kiss, smile and laugh that we share! You are a dream come true!!

01 August 2014

I was born for a purpose

Over the course of the last week I've found myself plumb, smack-dab, right-in-the-middle of a situation I didn't solicit.  As the events have unraveled over the span of about six days, at times I've been left feeling lost, helpless and more or less, mostly just plain confused.  Don't worry, it's not something major with the hubs or our kids, but it will likely affect us all to some degree at some point in our future.

It just feels odd to have been so completely blind-sided and the only thing I know to do is to ask God how he wants me to help make things better under the circumstances.  And even more than that, I know that I have to keep my heart wide open so I'm able to hear Him when he reveals what my role is supposed to be.  Even though I don't know the specifics of how things will play out, I do have faith that God will guide and equip me with knowledge and energy and above all, He will provide everything I need to do His work... whatever that may be!

Dear Lord,  I am your faithful servant...  I want to do Your work and abide by Your will.  I trust You to lovingly care for me, guide me and provide me with the tools I need to accomplish the tasks at hand.  Please help me to maintain an open mind and a willing heart and help me to share Your love, peace and forgiveness with others in my life.  In Your name I pray, Amen.