Living With Down Syndrome: More Alike Than Different?

I’m not sure where it got its start, but More Alike Than Different is a phrase that’s been used in the Down syndrome community for a while now.  It’s also a frequently used hashtag on Instagram.

It has just never rung true for me and our experience with parenting a child with Down syndrome.

Before I’m strung up or stoned, will you hear me out just a minute?

I understand the reasons behind the hashtag, and they’re all good ones, but it isn’t a sentiment that resonates with me.

I agree that many people with Down syndrome have the same wants and desires, hopes and dreams as people without Down syndrome.  But in my experience (and I hear the same from other parents I know) almost everything about parenting a child with Down syndrome is different.  More alike than different just doesn’t feel like an authentic testimony, either for me as a parent or for Jessie.

Why do we assume “different” is bad?  Can’t different simply just mean different?

With my older two children (one boy and one girl) there were great differences in each of them and what parenting each of them required of me.  In the case of our third child with Down syndrome though, the differences were even greater.  Some of the differences have been because of health concerns.  Almost every health concern that happens to people with DS occurs in the rest of the population, some just with greater frequency.  Many of the differences we’ve experienced have been because of the cognitive differences, delays and communication issues.

Per NDSS, The majority of people (95%) with Down syndrome have trisomy 21, which means that extra chromosome is replicated in every cell of the body.  This is different from all other people who don’t have Down syndrome.  Genetically speaking, there’s much about Jessie that is the same as the rest of our family, and there are some things that are different from the rest of us that don’t have Down syndrome.  Why does acknowledging that mean I’m saying something is bad or wrong?

This morning, my phone rang around 1 am.  It was Jessie calling me from her bedroom.  She had started her period while she was sleeping and she was having very bad cramps.  Because she was both tired and in pain, her ability to communicate everything to me wasn’t as good as she usually can.  It took me a few minutes to realize that she wasn’t being obstinate in not answering some of my questions, but that she herself was having a hard time knowing the answers.

This morning as we sat at McDonald’s having breakfast before heading to Cooking Camp, Jessie said to me, “I don’t feeling good last morning.”  Expressing time (this morning, last week, last year) is something Jessie has difficulty with.   And she sometimes puts her words in a sentence out of the typical order or not grammatically correct word choices (don’t feeling good).  My point is, Jessie is 16, and this wouldn’t be a sentence you would hear at that age from a “typical” 16-year-old.

When Jessie tore open her jelly packet she struggled with it, made a sound of exasperation, then was able to get it open on her own.  The fact that this was difficult for her was not a “normal” or “typical” experience, it was different.  So was the fact that as I watched her, I resisted the urge to immediately help her in her difficulty and then felt so proud that she accomplished it on her own.  Yes, we experience those same struggles with our other children, just not over a jelly packet at 16.

If you’re a newer reader to my blog, you might think Jessie is more cognitively affected than she is.  She is very capable.  She learns and grows more independent every single day.  She speaks pretty well, but she thinks with so much more clarity than she can sometimes express.  She reads well.  She struggles the most with certain types of fine motor skills and she has a foot issue (unrelated to DS) that affects her balance even more than the average person with Down syndrome.

In about a year, when Jessie is 18, we will begin the process to become Jessie’s guardians.  While she is so very capable in many ways, she will always need someone to oversee her care and help make medical and financial decisions.  When she out lives us (her parents), her siblings will assume that role.  That is different.  It is not more alike than different.

Different doesn’t infer good or bad, it’s just different. 

A while back, I read this blog post, “On Radical Acceptance (And Not Fixing Your Kid), and it resonated deeply with me. Written by a mom whose child has a different chromosomal abnormality,  I cried when I read the part about “The Button Man” and I sobbed with understanding as I read this:

“Somehow, somewhere, the urge to want to change my kid subsided…Maybe it subsided when I saw all these differently abled people–people in wheelchairs and people who ran, people who ate orally and people fed by gtubes, people who spoke and people who didn’t–and I finally felt in my bones that all of these ways of being were good.  And by good, I don’t just mean, “Hey, it’s all good.”  I mean in that deep affirming way that things are proclaimed good in Genesis.  There is dark, and it is good, and there is light, and it is good, and there is a grown woman who gets around by scooting on her butt and she is good, and here is my daughter, one year old, twelve pounds big, who has just started learning to hold up her head (thanks or possibly no thanks to our tummy time), and she is goodShe is so, so good.

It seems to me that one of the reasons parents use this hashtag is showing that living with a person with Down syndrome is a positive experience.  And I will agree with that all the day long!  But it is different.  Jessie’s life is good, but her life experiences are a lot different than that of my other children.  And, for the most part that isn’t because of any way that she isn’t being included or accepted or supported.

Our Down syndrome group last year bought shirts that say, “Different, not less.”  We didn’t at the time know that was a slogan used for autism awareness, but I like that SO much better than “more alike than different”.  That sentiment much more accurately expresses what I feel is my experience as a parent and how I see Jessie.  Different.  Not less.  We’ll broach the whole subject of “special needs” another time 🙂

We want to be an encouragement to parents who are expecting a child with Down syndrome or have a younger child with DS.  We also want the world to see that our children with Down syndrome aren’t a burden to us.

Sometimes, not in spite of their differences, but because of them, our lives are richer.  Have you never rejoiced in your heart over a jelly packet independently opened or the toilet paper roll replaced?  Well, I have.  That’s just one tiny thing that comes to mind.  Jessie gives me a lot of reasons to be thankful that God allowed me to be her mother.

What if, instead of “more alike than different” we project that different is ok? In fact, different is very, very good.

Josette

Get Your Free Printables

Subscribe to updates and get your 1) sleep study checklist 2) So You're Having A Sleep Study story printable designed to help your child or adult with DS know what to expect (includes photos) during a sleep study. Choose the story best suited for your child's age.

I will never give away, trade or sell your email address. You can unsubscribe at any time.

Leave a Reply