Monday, June 29, 2015

"Sharing" the Only Child with Down Syndrome

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.”

(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 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. 

1 comment:

Anonymous said...

This makes perfect sense to me. We are vulnerable and very alone. Most likely moreso for my family, as I am single parenting and my child with DS has autism