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!!
