Down Syndrome and the Only Child

Samantha is an only child. 

Sometimes I say this seeking pity.  Sometimes it's justification for feelings I may have, or as explanation for situations we may be in.  Sometimes it's said in a boast, knowing that our freedoms can be far greater with just one.  Sometimes it's just merely a statement of fact.

In our community, we're a rarity.  The average household around here seems to hold approximately 2.5 children under the age of 15, and, especially in the Down syndrome community at large, as evidenced through the 1,000+ "friends" I have on Facebook and in-real-life through our local Down syndrome association, that number seems to be closer to 3.5.

That's a number that proves to be rather isolating for someone like me. 

Someone with only one child. 

Someone with only one child, and that one child has Down syndrome.

Talk about rare!  If we were gems, or fine art, we'd be insured for astronomical sums of money.  Alas, we are not, and what we are actually worth can be quantified by worries, fears and concerns unique to us.

The most worrisome?  Who will care for her when we're gone?  Who will be her family?
 

I have often felt that isolation and a certain jealousy in the social gatherings I find myself in, the blogs and news articles I read, the conferences I attend.  I don't bring it up, and the people I'm with may have absolutely no idea that I feel at all different. 

But I do.

And that feeling of isolation, of difference, of worry, is ever-present, weighing heavily on my mind as I nod and smile, join the conversations, "like" the photos, share the articles.  And I feel like I'm the only person in the world who feels this way, who has these unique issues that shape my daughter's life in one way or another, likely in many ways.

And my daughter is my life.

I don't like to complain, and never broach the subject with anyone, knowing that they just don't understand.  But when I find one kindred spirit that I think just may know what I'm thinking, how I'm feeling, I feel a connection that I just can't describe.  It's like finding a long-lost family member, a member of the tribe, so to speak. 

I'd like to clarify what I mean by "complain."  I'm not complaining because I have only one child - we had always agreed that we wanted only one child.  There's a certain selfishness in having one child, and it's something we definitely enjoy.  When Samantha was born, up until she was about 5 years old and able to understand things more and communicate well, I couldn't possibly even fathom loving another child as much as I loved her, and couldn't fathom sharing that love, ever.  I had been an only child myself.  And it took so long to actually conceive that we knew that having only one was meant to be.  I was (mostly) fine with being an only child, and my books were my constant companions, as they are for Samantha.  If I refer to "complaining," I mean discussing those unique issues that come with being the parent of an only child with an intellectual disability. 

Do I revel in the fact that she gets to have ALL of me and her daddy, all of our attention and love?  Or do I feel that we've done her a disservice...

No siblings to have as support, as possible future care-givers, friends, guardians.  No siblings to play with and look to for peer modeling.  No siblings to protect her at school, in the community, wherever.  The overwhelming desire that our children marry into large families (oh, how feudal that sounds!).  No hope of grandchildren...the end of the bloodline...no children for her...

There's more, but you get the picture.

Last summer at the NDSC conference in Denver, I met another blogger who happens to be the mother of an only child with Down syndrome.  I was elated to have found her!  I mentioned it to one of my roomies at the conference, who happens to be on the NDSC board of directors.  She immediately began to name others that she knew who were the parents of only children with Ds (some of whom I was already Facebook "friends" with, and had no idea about), and suggested that I request the creation of a Sharing Session on the topic next summer at the conference in Indianapolis. 

Sheer brilliance!  (I'll be there, and hope to co-host, if it's approved.)  

She introduced me to one such parent, who also loved the idea of the session, and suddenly my world began to open up, my mind began to feel as if a weight had been lifted, and I no longer felt so alone (anyone ever notice how many "siblings" sessions there are at the conferences?).   

An idea had been born.  Which gave birth to yet another.

Facebook...

Just how many of my 1,000+ "friends" were also parents of onlies?  How many more were out there that were not yet a part of my network? 

I wanted to find out.

I created the Facebook group, "Down Syndrome and the Only Child," a private group to serve as a safe place to discuss those issues and concerns unique to us, a group only for the parents of children with Down syndrome or other intellectual disabilities who are only children, and who will remain only children.

While conversations are not flowing each and every day there, there is so much relief in knowing that we're all there for each other.  All 140 of us!

Word of mouth has driven more and more people there seeking refuge and support.

If you are the parent of an "only" with an intellectual disability (or more than one child, each with intellectual disabilities), please search for us on Facebook (or click Down Syndrome and the Only Child).  If you know of someone else who is, please tell them about us.

None of us should ever feel alone.