A while back I wrote about the need of parents of “only
children” with Down syndrome to have the support of others like us, to have the
understanding by others not in our
situation of the uniqueness of our position, the specific challenges we and our
children face that couldn’t be understood by the vast majority of the population, in the Down syndrome community or otherwise. Sibling sessions are never uncommon at Down
syndrome conferences. Parents of a child
with Down syndrome who also have at least one “neurotypical” child just can’t
understand us, assume that things for us are exactly the same as they are for
them. We just can’t fully allow ourselves to relate to them, either, or,
perhaps, it’s just a manifestation of the dreaded “J-word.”
JEALOUSY
(I'll let that word lie dormant for now, though, and move on...)
Seriously, for about 8 years, I thought I was just about the
only one.
The only one who had ever walked this particular path.
The only one who was terrified of the future for reasons so
different from parents of others.
The only one who had absolutely no idea who would be able to look after my child when I’m no longer
alive on this earth.
The only one who felt the cold sliver of fear and pain of
sadness in my heart that I would likely never become a grandparent.
The only one who wanted to send my child to school every day
all day all year round because it was the only place she could benefit from
interacting with other children.
It’s hard.
And
feeling alone is almost even
harder.
I mean, I don’t like to whine. I would never have considered voicing those
fears to a parent of neurotypicals. Not
only would they not really get it, I
think, but they would likely also be quick to downplay my concerns.
Okay, so maybe I sell short the character of the vast
majority of parents of a child with Down syndrome… I know it’s unfair. I know that most of you reading this post
also fall into that category. And, for
that, I’m sorry.
To be perfectly honest, I write what my primary feelings
are/were/have been…I write from that place in my heart that is filled with love
and worry for my beautiful, sensitive, innocent, unique daughter. We
all have that place in there, regardless of how many children we have. And, whether mine is misplaced or not, it’s
how I feel, and my concerns are real
to me.
Two years ago, my friend Amy and I met for the first time on
the last day of the National Down Syndrome Congress (NDSC) convention in Denver. We were introduced by a mutual friend who
knew we were both parents of “onlies,” and we embraced like old friends, as
kindred spirits, each with the same concerns for our children. We immediately recognized a need for outreach
to all of us spread out there who had yet to find each other, had yet to find any kind of support.
We began to think of ways we could get some sort of
recognition at a future NDSC event, and, as a means of research into just how many of us were in this unique
situation, 6 months later, my Down
Syndrome and the Only Child Facebook group was born. The response to the group completely bowled me over! Almost overnight, I watched the membership
requests surpass 100, and it kept growing to its current number over
200-strong! Those who joined expressed
so much joy at having found a place to just talk
about it with others who totally get it,
were excited to be a part of such an elite group so critical to our emotional
well-being.
Requests to The-Powers-That-Be at NDSC were made
for a Sharing Session (an informal group session led most often by parents on
the first day of the general conference, covering broad topics of
interest). After a few initial
turn-downs, Amy and I were thrilled to get word that permission was granted,
and an “Only Child” session would be included this year in Phoenix, with us as
co-moderators!
Today is Sunday. I’m
currently sitting on a plane returning home as I write this. The high of the weekend in Phoenix will
likely cling for another few days, having started from the moment my plane
touched down there, with a true pinnacle at the moment Amy and I began to speak
and lead a group of more than 30 parents who were excited to have found each
other.
Everyone introduced themselves, spoke about the biggest
topics of concern they face as parents of onlies.
Some cried.
I’m actually getting teary now as I write this.
It was that impactful.
They were tears of worry.
Tears of gratitude. Tears of just
plain being overwhelmed and under-understood...lost...for so long.
And now found.
Maybe I make this sound super dramatic, but really, for me
and for others, it was.
It’s hard to explain the impact
we all had on each other. I actually
feel really changed by that experience, and am pretty sure I’m not alone.
I’ll write more soon, in another post, about what topics
were discussed. But for now, I just
wanted to re-live that feeling.
The need for this group was obvious. We need to make sure TPTB at NDSC know
this. For those of you who are reading
this, who attended that session, or who would plan on attending a future
session if it were offered (the convention will be held next year in Orlando, at the end of July), please send feedback of some sort to NDSC…I can
provide you with e-mail addresses (I don’t particularly want to make them public
here…just send me an e-mail at bateminx@yahoo.com
and I’ll send you what I can!).
Thank you to everyone who moved me this weekend, and many thanks to the amazing folks at NDSC for helping to make this happen.
