The (sometimes funny) reality of Down syndrome

Down syndrome used to be a scary thing to me.  I had a vague idea of what it meant, but tried not to give it much thought.  Having a child with Down syndrome was something that happened to other people.  Until eight years ago.  When my first son was born.  And just like that, I was other people.

551993_3709787225597_610305323_nWith the diagnosis came doctors and therapies and low muscle tone and feeding issues and delayed development and IEP meetings and lots of worry and second guessing and puzzle solving.  With the child came affection and smiles and giggles and determination and intelligence and kindness and energy and strength and silliness and love.

DSC07290Down syndrome is not the all consuming thing it appears to be when you are on the outside looking in.  It is one part of our lives.  One part of my son.  While Down syndrome does provide challenges for him and for us, it also makes him who he is.

20130126_185832In the past, I have written about how he inspires me and teaches me, but another part of the reality of living with a person who has Down syndrome is that he has some very quirky behaviors that can be both maddening and amusing.  In celebration of World Down Syndrome Day this month, I wanted to share the sometimes funny reality of Down syndrome and a little bit of the real Josh.

DSC03453Objects are forever going missing in our house.  Laundry items disappear without a trace.  Prized possessions of siblings are stashed.  Eyeglasses vanish.  Remote controls evaporate into thin air.  There are the usual hiding places–behind furniture, in the hamper, under the bed.  Even people who don’t live with us know these hiding spots and search them immediately when they can’t find their keys or purse upon departure.  There are the trickier spots, ones that take days or weeks to discover like the glasses behind the dresser,  the relative’s camera stuffed into a Christmas stocking and hidden in a closet at a family gathering or the cordless phone that has never been found.  We don’t know his motives for the constant hiding.  Perhaps it is clutter management at its finest.

Imperfect foods are also on his list of things he would like out of sight.  I have watched the surprised faces of relatives as food is dropped in their laps or onto their plates.  If the french fry doesn’t look right, the french fry must go.  No amount of redirection from us has changed this behavior.  It is some sort of rotten french fry instinct.  So, if you happen to be sitting to his right, you are going to be getting some ugly, misshapen fries on your plate.  Or in your lap.  Or flying through the air in front of you.  If you don’t feel you can preform these french fry receiving duties, please let us know and we’ll change your seat.

And speaking of food, this is a child who wouldn’t touch a piece of candy until he was eight years old, but will eat an entire grapefruit in one sitting.  To this day, the only candy he will accept is a “butter cup,”  a Reeses peanut butter cup, the traditional shape and size.  No holiday shaped or miniatures accepted under any circumstances.  Saltines are still his snack of choice and we often find the underweight cracker muncher hiding out in his sister’s princess tent trying to down an entire sleeve that he has secretly taken from the cabinet.

If Josh loves something, everyone knows it.  He will ask for it every single day.  Movies, restaurants and favorite people (even those who live hours away) are sought daily.  Requests to go to the beach house (which we only visit once a year) are made year round.  He asks once and gets a no.  He asks again with a bigger smile and a high pitched inflection at the end of the question for emphasis.  He gets a no and a laugh and he laughs in return.  To him, every day has the potential for greatness.

While he can be entertaining, he also likes to be entertained.  The thing that most entertains him?  My suffering.  From a very young age, he would go into hysterics if I tripped or startled.  Any mishap I suffer, sends him into fits of giggles.  But the thing that really gets him going…is grossing me out.  Sometimes it comes in handy.  When he has a sinus infection and his nose has to be suctioned, he lets me do it because I gag with each extraction.  I get great photos of him if I pretend to gag between shots.  I am talking, falling over, floor slapping, can’t catch his breath hysterics.  I am hoping never to be in a situation where I am injured and need his assistance.  I doubt he could do much while doubled over with laughter.

20121202_105719There are so many stories I could share about my son.  Some are funny, some are sad, some are inspiring, most are happy.  I don’t know how people on the outside see him, see us.  This year on World Down Syndrome Day, I hope people get not only a sense of the inspiring, heart warming, up side of Down syndrome, but a real sense of the normalcy of it.  Josh is a contributing member of our family.  He is an equal part of what makes us, us.   He matters no more or no less than any other member of our family.  He brings with him talents and struggles, good days and bad days, failures and triumphs.  The rest of us do the same.

DSC00707The combination of what we all bring with us makes our family a force in this world.  Josh is a vital part of that force.  Just as he is one part of us, Down syndrome is one part of him.  Down syndrome isn’t so scary.  It is one little piece of the miracle that is my son and therefore, one little piece of the collective soul that is our family.

232323232%7Ffp53273)nu=4695)247)239)WSNRCG=345862658532 nu0mrjWorld Down Syndrome Day is on March 21st (3/21), chosen to represent the three copies of the 21st chromosome expressed in individuals with Down syndrome.  Celebrate World Down Syndrome Day by learning more about Down syndrome at or .

22 thoughts on “The (sometimes funny) reality of Down syndrome

  1. Kathy Christensen

    Loved that. Thanks for sharing! I was cracking up — Sean hides things, too! Mostly, the remotes. He keeps us on our toes…

  2. The Next Step

    What a beautiful post! I nodded along through all your funny stories – each one of those could be allocated to one or another of my girls. And I am so with him on the “butter cups” – you just don’t get the right peanut butter to chocolate ratio with those tiny snack sizes!

  3. Jen

    Oh my gosh! We almost wrote the same post, and posted it to Honest Voices! I don’t usually put a link into a comment, but this is uncanny so I have no choice! My son has Sensory Processing Disorder, and well as a host of other issues. He is 7 1/2 and currently semi-terrorizing his playdate with a “typical” friend. That’s the kinda downside, but the upsides are way better! Also I broke my foot a couple of years ago right in front of him, he was laughing so hard at me, I couldn’t get him to go get help. I had to crawl to my cell phone and call my mom, while he fell to the floor laughing!

    1. naturallyeducated

      Hi Jen! Just read your post, it is uncanny! Even more coincidentally, Josh also has SPD and yours is the first bog I have read about it. I spend so much time learning about the Down syndrome aspects that I rarely get around to researching the SPD. A lot of Josh’s behaviors are related to his sensory needs. He is sensory seeking in some instances, sensory avoiding in others. I will definitely read through more of your posts, glad to connect!

  4. Nikki | Days With Us

    Beautiful post about your son and your family! I loved reading it. Not knowing Josh or you, your words jumped out to me. I especially enjoyed the part about how Josh enjoys grossing you out. Now that’s funny. Thank you for allowing us to learn a bit more about your family and Downs Syndrome. I found your blog through the Honest Voices linkup.

  5. Dorothee

    I love reading about Josh! Thank you for teaching us about Down Syndrome with a smile, it’s inspiring. Our little girl is now 3 months old already and doing well. Thank you for all your guidance.

  6. Sean Herrala

    This is a great read! I’m always thankful for a well-written effort to help me understand life through the eyes of others who have experiences that I haven’t had. I’m a friend of your sister and I can tell you that she’s crazy about Josh (and you). Good job being awesome.

  7. Peg

    As always, Rose, you have a beautiful way of putting everything into perspective. In all the craziness of IEPs and evaluations, I tend to lose sight of who my son really is– distinct from his “disabilities”. Thanks for reminding me. Hope to see your beautiful collective soul sometime soon.

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