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.   

MIA and the Reciprocation of Guilt

I've been a bit (okay, a lot) MIA lately.  And before I go further here, I'd like to add that any time I read a blog that starts with those same words (rather frequent these days...), I roll my eyes as they begin to glaze over, then click the little X up in the corner so fast it would make your head spin. 

Feel free to do the same.

But back to my original point, in the last 6 months or so, I have felt that if I can't take the time to read the blogs of other people, to comment and show my support, then I have no right to expect the same from them.  I'm just not worthy.  If I can't read blogs, I shouldn't be writing one.  Something I learned several years ago is that if you show the love by commenting, others will do so in return, if for no other reason than the fact that you've laid the groundwork for a nice, healthy guilt trip.  So the reaction to guilt is a reciprocation of guilt.  If that makes sense. 

I comment, they comment, I comment again, because they commented, they comment again because I commented because they commented because I commented, and so on and so on.  And then I have new "friends!"  I like to see comments on my blog posts.  Makes me feel like I've accomplished something, even if it's just in the trade of the guilty consciences.  Not like I quantify my worth or the worth of my words, stories and photos by the number of comments I receive, but there is something rather nice about it. 

If I keep on writing and don't read other blogs, will the comments/readers completely stop?  Will they dry up and go away merely because I am so caught up in my own selfish ramblings?  Will they continue as they have always done because, if I'm wrong, nobody really cares if I'm reading their blogs or not?  I must say, I certainly don't expect reciprocation when I comment.  But sometimes it does serve to remind people that I'm still here.  Sometimes.  I mean, sometimes I'm here, not sometimes it reminds them, although I'm sure it sometimes reminds them, too...

So I'd like to say I'm going to continue on as normal.  I'd like to say I still have time for writing, even if I don't have time for reading.  But the truth is, life is busy, and my time spent on computers (like, real computers, not my cell phone) when not at work doing work things on computers, is scarce.  Especially since my treadmill, that sweet friend that has captured my morning "me-time," still calls to me like a siren from the deep basement.

I also just need to come up with something to write about.  I could dive into the issues with school, but so many people surrounding Sammi at school actually read this blog (uh, or used to read it, back when I was still writing it with some regularity), so I tread lightly there.  I certainly knew that day would come.  I could just start posting photos, could start getting into current events, figure out something topical and of interest.  Not so easy, when our lives are pretty ordinary (quick note to any new moms of children with Down syndrome - you may not believe it yet, but most of your lives will become pretty ordinary, too!).

So, if you've braved this post here to the end, thank you.  And please, please stick around.  I'm trying, really, I am, and have a few posts lined up.  I'd like to start again, woo and court you back into my embrace, because I love and value you all. 

:::smooooooch:::

  

Getting Real on the Real: Farm Kings

When it comes to reality TV, I'm usually highly suspicious.  Suspicious of the motives behind the creation of the program in general, suspicious of the people appearing in it, suspicious of the message being sent across, and suspicious of the method of delivery of said message.

TV shows aren't just created for the heck of it - I challenge you to find a show somewhere that isn't making money off of advertisers or someone (and don't say PBS - those shows were still created for-profit, regardless of what network they're being aired on).  Reality shows, while they may seem pretty crap in many cases, are very, very clever, and draw in the big bucks almost effortlessly, for very little budget by comparison.  The producers come up with an idea.  They pitch it.  They cast.  Just like any other show.  But this time, they want "real" people involved.  What many people don't realize (okay, don't slam me here, I have no sources to quote for this information other than my gut instinct and the dribs and drabs I find in the tabloid news in the checkout line at the supermarket...) is that those "real" people are often wannabe actors, people who wish to claim the spotlight for their own and become a household name, regardless of the mud they get dragged through (The Bachelor, anyone?  Jon and Kate?  C'mon, I'm sure you've all watched Jersey Shore, at least once...).  What many people also don't realize (same disclaimer applies here, btw...) is that the producers create almost everything.  They put people together that they know will result in conflict.  They craft situations which will create drama.  They get people to do things they would never ordinarily do, and then (wait for it...), they edit the crap out of the resulting product, leaving the viewer with something resembling reality about as much as a cat resembles an anteater.

Seriously!

(And don't get me wrong, I'm a reality TV addict, so I'm not actually knocking it, just making a point.)

So, upon hearing that a reality show is focusing in some part at some point on someone with Down syndrome, I'm extra suspicious, ready for the poor them mentality, the problems inherent in their lives, the problems they may cause others.  There was that show about the American nanny who would visit families and work with them to correct behavior issues that are tearing the family apart.  There was one episode with a boy with Down syndrome.  It was done quite well, and I applauded them for it, but again, it was a problem that needed fixing.

Not like Down syndrome comes up very often in reality programming, but still, you get my point...

Farm Kings is a fairly new program on the not-so-new-but-totally-new-to-me network, Great American Country (GAC) that airs new episodes every Thursday night at 9pm ET.  If you hadn't guessed already, it's a reality show.  It follows the King family of western Pennsylvania, and their life living on and running Freedom Farms.   Mom, Lisa, has 10 children, the youngest of which, Ben, has Down syndrome. 

And that's it.

Simple.

Engaging.

Refreshing.

Ben has Down syndrome.  Ben is a part of the family.  Ben is not treated any differently, although there are sometimes different things that need to be done to keep him engaged and active, but these are not the fodder of people seeking high drama.  And it's a relief. 

The family love each other and work together.  They get on each other's nerves from time to time, and don't always do the right things all the time, but their hearts are good, their motives pure.  (Oh, and did I mention yet how seriously good looking everyone in this family is???)  In one of the episodes I saw, the most dramatic thing to happen was that two of the sons decided to build their mother her own greenhouse as a surprise, at the expense of her barely-used garage and a few flower beds.  Again, pure motive, and purely entertaining.   

In that same episode, the family decide to have a competition in the community to see how much weight everyone can lose by eating farm-fresh produce every day, and getting into an exercise program.  Great way to promote their business, great way to promote fitness and health.  Ben was included in this, as keeping him active on a daily basis could be a challenge, as many of us with children with Down syndrome can attest to.  It was so obvious that he is a valued and much-loved member of the family.  He is not given any special treatment because of his diagnosis.  He is present in their everyday lives.  He has a fun-loving and warm personality that shines through on-screen.     

There's something that's such a turn-off about watching "reality" programming that seems artificially staged and set up for a great big emotional and/or physical mess, but there's something so...right...about following this family as they work with each other, as they work with their community, as they teach you something about what they do and why they do it. 

Do I feel that the producers of Farm Kings guide the action in some way?  Oh, sure.  Of course they do!  But nothing is over-the-top, nothing feels wrong, there is no guilt or guilty pleasure in watching.  It still feels real, authentic. 

And, in this case, I'm very thankful and pretty sure that what you see of this TV family is pretty much what you get.

And that's real.

Saving Santa

We'd never really thought about it before, but the concept of traveling over Christmas poses some interesting logistical issues when it comes to children and Santa.  Lots of questions that parents need to be prepared to answer, lots of lies that need to be told, even greater than the BIG lie of Santa himself. 

You know how one small untruth can get you in a boatload of hot water?  And how you have to create another untruth to cover that one, then another, and another, and another, and pretty soon you can't keep your story straight and people start looking at you sideways, starting to see through the intricate web of BS you've painstakingly woven?

Yeah, me either.  ;-)

But this was kind of like that, and I am thankful that kids, or at least my kid, doesn't know yet to question what Mommy and Daddy say.

Santa comes on Christmas Eve when kiddies are asleep.  But how does he get in?  He comes down the fireplace.  Nevermind that that fireplace is gas and has no chimney, right?  And if you leave milk and cookies, you'd better remember to eat them/put them back in their containers/throw them away and leave a few crumbs before you go up to bed or, OMG, what kind of psychological damage would you do to your kid then??  And presents - do you make some of them from Mommy and Daddy, or are all of them from Santa?  How do you explain that Mommy and Daddy give presents to each other, but not to the kid?  Do Santa's elves really make them, or do they buy them?  Where do they get the money?  Do they have Target and Wal-Mart at the North Pole?

Hoo boy...

Just like that stupid elf, which I refuse to subscribe to (hell, I just don't have time!) - you have to keep up with the charade every day!  No thank you.

There needs to be a guide book for parents about this stuff so we can be sure to get it all right.  But one thing is clear, I can see that as the skill of deductive reasoning begins to grow in our little ones, as they begin to ask the most difficult of questions and stop blindly believing everything we grown ups say, the Great Myth that is Santa breaks down and the truth comes out.  I do wonder at what age that will occur for us.

Anyway, back to travel and creating more BS lies that need maintaining...

We decided upon our story early on, well before leaving for England over Christmas.  In answer to her excitement that Santa would be coming soon, we told her that he knew that we couldn't carry stuff in our luggage while we were traveling, so he would only bring a few small things to Auntie Caz's house, but would still come to our own house while we were gone to bring things for her.  And, knowing that we couldn't leave the presents out while we were gone (two curious kitties would demolish them), we told her that Santa was well aware of the cats, and would be putting the presents up in a closet for us to bring out on our return. 

Oh, we are soooooooo smart!!  We patted ourselves on the back for that.  We put mince pies and milk out for Santa along with carrots for the reindeer on Christmas Eve, next to Auntie Caz's small, wall-mounted gas fireplace.  In the morning, Samantha walked over to the fireplace and shouted into it, "Thank you for the presents, Santa!"  (...and thank you Auntie Caz for having some wonderful, easy-to-carry, paperback books wrapped up for her under your tree!!...) 

When we returned home to the US, we reminded her that the presents from Santa were tucked away safely, and that we would bring them out the next day (New Year's Day), when Gramma and Grampa were coming over to do Christmas with us.  She was happy with that.

May I just say how grateful I am that stores were open early on New Year's Day?  I awoke with a start that morning, suddenly worried that the small, not terribly exciting presents we'd gotten for her would be a disappointment to her.  In years past she'd have been happy with anything, but her tastes have become more, well...sophisticated.  We never know what to get her anymore, as she doesn't ever express any specific interest in specific toys.  She doesn't watch commercial television, so we don't have the opportunity to gauge her reactions to the toy ads.  I had just gotten her some little stocking-stuffer-type things and a couple of books, but was at a loss beyond that, and realized that morning that she needed some kind of action toy, something that does something, that she can physically play with, something that would keep Christmas exciting for her.  So I sent Steve out to Target, where he hit a goldmine, and picked up a couple of things that she was extremely happy with, thank goodness.

If Christmas had been a flop, what would that do to Sammi's opinion of Santa?  Would she ever like him anymore?  Would the Christmas spirit forever be ruined for her?

Luckily we didn't have that problem. 

Christmas was saved.

Santa was saved.

And the lies continue for now...

 

Breaking Down Language Barriers (or trying really, really hard to...)

Samantha has finally gotten the idea that sometimes people speak different languages.  She knows she speaks English, knows that her sitter speaks Russian.  Actually, my little linguist has been able to count to 10 in Spanish since she was 2, used to know how to count to 10 in Japanese at that same time (although I never continued it with her and it has gone forgotten), and can now count to 5 in Russian (oh, that sweet voice!). 

On our last morning in England, waiting to check out of our London hotel, two young children, perhaps about 4 and 6 years old, sat on the couch in the lobby next to Samantha, looking out the window at the rain.  She greeted them, and asked their names, reciprocated only by their blank stares in return. 

She asked the little girl if they'd lost their voices. 

Quietly, I explained that perhaps they don't actually speak English. 

Sammi looked thoughtful for a moment, then asked the girl if she was from Russia. 

Again, a blank stare. 

And then, as we were about to walk away into the gale force winds and soaking torrents to the nearby tube station, Samantha tried one last-ditch effort. 

"Adios!" she called cheerfully. 

Again, met with no response, we walked away, mommy and daddy grinning from ear to ear. 

Good effort, baby girl...I applaud you!

Snowy Saturday Warm-Up

Almost 2 years ago, I was approached by a marketing firm representing General Mills, who asked me to do a series of posts about Cheerios.  Why not, right?  I knew I liked Cheerios, I knew I'd get some cool free stuff from them in return as well as some cool free stuff for one of my readers, and I knew it wouldn't require much effort on my part.  Win/win. 

I did the series, but in the process, learned something.  Not only were Cheerios tasty, but they are remarkably nutritious.  If you have never looked at the nutrition label on the side of a box of  plain Cheerios, go do it now!  Lots of fiber and vitamins, something I'd certainly like to see more of in our diets here in this household. 

As a result of that epiphany, I decided to try to think of a way to hide Cheerios in something delicious that Samantha loves, since she's not a terribly adventurous eater and won't eat Cheerios on their own.  While making pancakes one morning, I thought Why not try substituting some of the flour with Cheerios?  And blueberries are also extremely nutritious and I had a large quantity of fresh ones I'd just picked at a farm in New Jersey, but with Samantha not really liking them on their own, I figured I could hide them in pancakes easily, too. 

So, after some trial and error over the last year and a half, I have now perfected the recipe for Cheerios/Blueberry pancakes.  I have posted this recipe a few times in the past, but it's just so good, I have to share it again.  This morning, a cold, snow-covered Saturday morning on which we will be reluctantly removing all of the warm, sparkly, comforting vestiges of Christmas in a matter of hours, I made the pancakes for Samantha, along with a side of turkey bacon.  You can pretty much use any of your favorite pancake recipes, but just substitute half of the flour with crushed Cheerios.  Below is the one I like.  Leftovers can be refrigerated and microwaved later.

Enjoy!

3/4 c. flour
3/4 c. crushed Cheerios (put Cheerios in a zip lock bag and roll them out with a rolling pin until they turn to powder. You can also sift them, to make them extra fine after rolling to keep the pancake from being too dense, but it's not necessary if you don't have a sifter)
2 tsp. baking powder
2 tbs sugar (don't really need that much)
3/4 tsp. salt
1 1/2 c. milk
1 egg
2-3 tbs. oil
1 handful of fresh/frozen (thawed) blueberries, crushed if you prefer (Samantha doesn't like them if she can see them so I mush them up really well before adding to the batter, which turns a pretty shade of purple when I do)

Mix all of the ingredients into a medium bowl with a whisk, drop onto griddle or frying pan by the 1/4 cup (or more for larger pancakes). When they begin to bubble on the sides, turn them over for another minute.  Serve with syrup. 

Voila!

24 Hours: A Pox on the House of Bates

 

Samantha, feverish, sleeping on the couch

"I'm *never* sick!"  "Samantha's *never* sick!" 

 

Those are the words that so often slip so easily across my tongue, those words, smug and dangerous, tinged with pride and just a little bit of bravado.  And, in these days when I have finally decided to shrug off the wood-touching rituals of superstition as nothing more than a bad habit leading to an annoying and persistent obsessive-compulsive disorder, I take a deep and hopeful breath after uttering them.

 

And, two weeks ago, I ate my words, deflated some of that puffed-up pride and bravado, and vomited my guts out after presumably eating something bad in my take-out order from the local pizza and sub shop.  It was classic food poisoning - no fever, striking in the wee hours of the morning and keeping me firmly on my back in bed, drifting in and out of sleep, unable to even bear the annoyance of the television to entertain me, for an entire day.  I have no idea how I managed to get Samantha to school that morning, but she was extra helpful and uncharacteristically cooperative in an effort to ease my burden.  Thankfully, in classic food poisoning style, 24 hours was the turn-around time, and I began to eat again, regaining my strength. 

 

And 24 hours after I was struck ill, Samantha began to vomit, ran a continuous low-grade fever, and was, herself, flat on her back for a full day before beginning the ascent to health at the 24 hour mark.  Coincidence?  It had to be.  I had no fever.  I ate something neither Steve nor Samantha had eaten.  I was sick about 5 hours after I'd eaten it.  She must have the stomach bug I've been hearing has been running rampant through school systems across the country. 

 

We all breathed a collective sigh of relief, knowing that our out-of-the-country Christmas vacation with non-refundable airline tickets and hotel rooms was a mere week away. 

 

And then, just 2 days before our scheduled flight to England, disaster.

 

Steve was struck down with what I was certain was the flu.  Ready to vilify him for his stubbornness at refusing the flu shot each year, I hoped against hope that it was something else.  But, while he had no vomiting, his fever ran high, and he spent an entire day unable to move from bed, exhibiting the classic signs of flu, an illness I understand can leave someone incapacitated for up to a week. 

 

With him in bed with a rather high fever, uncommunicative and certainly unable to make rational decisions, I contemplated canceling our trip. 

 

But, 24 hours after that, a mere 24 hours before our flight, the fever broke, he regained some strength, and he was able to drive himself to the local CVS Minute Clinic where he was presented with a diagnosis of a very bad case of strep. 

 

So how many of you have actually jumped up and down and shouted with joy at a diagnosis of strep? 

 

Weird, I know. 

 

After a solemn motherly promise that they wouldn't swab her and would only look into her throat with a light, Sammi agreed to accompany me to Urgent Care that same day, where I allowed them to swab me (negative, of course) and that look down her throat revealed the likelihood that she, too, shared Steve's diagnosis. 

 

What are the odds of the exact same thing happening 3 1/2 years ago before our last trip to England?  Any guesses?  Well, go figure, that's exactly what happened then, too.  See my post from May of 2010 here:  Out of Touch.  I'm not kidding...it's creepy.

 

We all picked up our antibiotics (mine in-hand, only in the case of illness during our trip), and knew that we'd be making that journey after all.

 

And, 24 hours later, we did.