Tuesday, January 28, 2014

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, everI 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.


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.   


Stephanie said...

I'm with you, sister! It's so nice to know that there are a few of us and we have the ability to talk about these issues that are scary to think about. I'm so glad I met you through your blog and joined the Only Child page. We are planning to be at the NDSC convention this summer, so I'll be at the session with bells on!

Jawanda Mast said...

I love this! Sums up so much of what we feel so often. Thanks for sharing and for starting our FB group. LOVE, LOVE, LOVE!

Jackie_Andrews said...

My faith in The Lord assures me that I am never alone. He also says it's "better to have a friend"..."it is not good for man to be alone".

This group is my validation that I am not alone! I am validated and supported.

With all my heart, I am grateful for taking a step to connect us.

Thank you <3

Leah said...

It's weird to know that I will be out of that group in 5 months or so... A lot of .my concerns with making the decision to expand our family were based on Cora. I knew that a part of my desire to have another is for her benefit. But there is no guarantee that my second will be able or willing to participate in the things that could benefit her, especially long term. The great thing that I see for all of our kids, only children or with siblings, is that we can help them build networks of support in life, and hopefully after we are gone. That is my hope, for sure. This is a great post, and it's so good to have found that support.

Anna Theurer said...

You are not alone! Chunky Chicken is our only and shall remain our only. I have this over whelming fear of what will happen to her after I am gone. I am thinking of as a child. As a child, my best friend in CT would care for her. Yet when she is an adult and I am gone. Who will look out for her?!?!? Is it horrible to pray that she goes before me? I do not want to live my life without her, but more so, I don't want her to live her life without me or my husband. Sometimes I feel like I am doing her a disservice by not giving her a sibling. Anyway, Becca, love your group!!!!

Kim Ludwig-Sharpe said...

You rock! What a great idea! I think as we go through this journey to find people as much like us as possible only help us see what is out there...and what a great network for you and Sammi as she gets older she will be able to connect with these friends and share her thoughts and feelings! Smiles

Vicki said...

I love this on so many levels! I will definitely share, as I know a few families here in Charlotte with onlies with Ds. I am an only child too -- it is actually a point of pride, even though of course it has nothing to do with me. But I like to reassure people that one can be an only child and still turn out okay :) (My husband might disagree on the okay part). Thank you for thinking of this great idea.

Mardra said...

Yup. I'm with you. And sometimes it feels taboo to talk about it. Complex reasons.
ANYway, I requested to join your facebook group - But I really only lurk on FB through my son, Marcus' profile - so...that's us. :)

Kerri Ames said...

I'm totally sharing this with a few moms I know that have one child and feel the same isolation you express so eloquently. I am so happy that you not only feel a need but take up the banner so others won't feel alone.

Anonymous said...

We have a one and only with DS and I share your worries! I don't log onto FB much but will check out the page. Found your blog the the main DS board on BabyCenter.

Heather Kendrick said...

I worry about this same thing... I have a Son who is two years younger than my daughter w/ds who is 21. My Son has epilepsy (Seizures in his sleep. I worry that he won't be able to care for his sister if the time comes. I think to some extent we all worry as parents about this, and pray family members will step in, and be there for our children if needed. Hugs!!!

Rochelle said...

Great idea!

Anonymous said...

Thank you very much for creating this group! We live in Buenos Aires, Argentina, but it's the same, we will connect!! very happy to have found you! Carmen and Cristina.

Terri Hill said...

Thank you for putting this together. I am always trying to think of the right response to the well-intentioned demands that we have another child, but it seems as though whatever "lame excuse" I have is blown off... until I ask if they have seen the size of my son's head. Nailed it.