Alternate Reality

Trudging through social media, I am reminded time and again of the old adage about opinions and how everyone has one.  For the shy and the outspoken, Facebook and the like give all who wish to climb upon it a platform- a level opportunity to express one’s opinion – and I find that opinions are as widely varied as the subject matter.

I also find that sometimes conversations are needed. It was evident as I scrolled through my Facebook news feed last Wednesday morning.

A&E premiered Born This Way, a reality show featuring young adults with Down syndrome. I anticipated its showing; I consider myself as a special-needs advocate, so I support anything that promotes awareness.

As I watch shows or movies, or read novels featuring those with special-needs, I feel this on-edge anxiousness, waiting for some derogatory comment or inaccurate statement. In conversations over the years, I have learned to wait for something hurtful to be said.

I believed Born this Way would portray Down syndrome in a positive light, so I went in with no trepidation.  I knew my friends within the DS community would be talking about it but I was not prepared for the discussions that would follow nor did I think my own questions would become a catalyst for such conversations.

Fellow parents of children with Down syndrome asked if the show was truly representative. Opinions varied, naturally. Posts and comments from moms whose children are more like my Josh were not being able to watch because they said their children will never to be like these young people.

Others with younger children were encouraged. They felt their children could grow to be like these young people and nothing could stop them from reaching their full potential.

Small white boxes held very different words. Hopeful parents lovingly compared their children’s progress and accomplishments, thinking optimistically about their future.  Others anguished over multiple diagnoses, things their children still haven’t done and might not ever.

My own Facebook post initiated a discussion between moms that have been on my journey with me since Josh was a baby. We met at our local Down syndrome association and have remained friends. And the opinions of the show were as varied as our children’s abilities, but not necessarily because of them.

I remember back to Josh’s diagnosis. I craved encouragement. I sought out support. I wanted others to know that Down syndrome was not the end of the world.  I even worked on a pamphlet of information for new parents that presented Down syndrome in a more positive light.

I too thought nothing would limit him. With intervention and therapy, nothing would be out of our realm of possibility for him to reach his full potential.

When I read about the show, someone commented that it should be shown an OB offices when a Down syndrome diagnosis is given.


Or- maybe not?

Many times the lines become blurred between expectation and reality. Sometimes those lines are so distinct and bold that reality is a slap in the face. Our own reality can be far from the reality on TV and certainly from “reality TV”. Even in the Down syndrome community.

Last year I wrote a blog post called “A Different Kind of Wonderful” and it was shared on another blog, title rewritten as “A Different Kind of Beautiful”.

However, my original idea was actually, “A Different Kind of Down Syndrome.”  But when I mentioned that term in a comment, a fellow mother of a child with DS  told me this was divisive.

So I changed it. Divisive is the last thing I would ever want to be within the community that needs to be bound together in order to support each other and advocate for our children.

But I am finding that there is division.

A friend expressed that she is afraid to tell of her son’s accomplishments. She finds herself apologizing that her child is doing well when others struggle so greatly.

There are moms like me whose children function at a much lower level and have additional diagnoses. We feel hurt and cheated that our kids “aren’t there “and may never be.

The young people on Born This Way are all – pardon the term, because I know many don’t care for it – high-functioning. But even the father of the young man with Mosaic Down syndrome himself said his son was higher-functioning.

And as I watched, I mentally pictured a collective eye-roll among many of my friends who can’t relate. I confess, I’ve rolled my eyes. I’ve thought, “If he just had Down syndrome,” or” If only he could talk.”

My heart sank as I read comments of friends and their friends on Facebook Wednesday morning. Many cried as they watched. Others won’t watch because they knew it would be too painful.

I know that pain. I quit attending Down syndrome association meetings and Buddy Walks after Josh’s ability to participate in the activities ceased. As autism became part of our reality, watching his peers pass him by developmentally sent me into a pit that took me years to climb out of.

Some days I still claw my way up from that dark place where I could only see through disability-colored lenses. The place where I didn’t think other moms “got it” because their kids could talk and sing in circle time and went to the bathroom and held a pencil and wrote and drew and read books and sat still at a table without turning it over.

After all, their kid had “just Down syndrome.”

I still get the cheated feeling.

Yesterday, my youngest son was in a Christmas program at our church. Before I had children, I used to dream of my kids being in precious pageants and watching them play on sports teams and dancing on a stage.

I’ve gotten to watch three.

But not Joshua. Never him on the church platform. Never him singing, filing in with the others and me seeing his face on the big screen as the camera pans to each child.

While some children with Down syndrome can, Josh cannot.

I know what it’s like to be smile with joy for my other children through tears about another.

I felt their pain and anger – anger about a show that is to represent Down syndrome, yet seems to only highlight the brightest and the best. Resenting the fact it doesn’t accurately paint the broader and wider picture of what Down syndrome looks like in many lives.

But I have to say I did not feel that pain or anger as I watched. I don’t know if I somehow detached myself or if it’s just where I am in my own in my journey.

Many days have been spent with me on my face before my God and Him showing me that my path is my own and not anyone else’s.

And that He chose my son for me.

As I quit comparing him to others, and only to him, was I able to see him for whom he is and he is not the sum of his limitations, nor his accomplishments.

In turn, it has made me be more open to those of all abilities and simple celebrate people. I write and tell our story because I want people to know that while having a child with special-needs is life-altering, it is not a tragedy.

Will this show help change the perception of Down syndrome? Can it accurately do so if it doesn’t represent the community as a whole?  Do we as parents want the most positive or the most realistic picture presented of living with DS?

These are questions I am not sure how to answer, because if I’m honest, my feelings are fickle and can change at a whim. I don’t always know what I feel about Josh’s disability. Some days it’s no big deal. Other days it is all-consuming.

I just know what I feel about him. And that absolutely nothing will change the depth of love I have for that precious soul.

Will I watch tomorrow night? Most likely. Simply because I want to and because I can now. I may not have been able to before. And that would have been okay.

A few tears may fall from my eyes for the young woman who cannot bear to hear the words “Down syndrome” because it makes her feel uncomfortable. Or be angry toward her mother because for taking her 20 years to accept her.

I may laugh because some are witty and I may even have to shoo my youngest out of the room if they begin talking about more adult subject manner.

I may cry because certain days it hits me harder and just because it didn’t last week doesn’t mean it won’t.

Stay tuned…