Gillian Marchenko

I belong to a private Facebook group for parents who have kids with a dual diagnosis of Down syndrome and autism. I think of myself new to the autism world but in actuality, my fourth daughter Evangeline has held the diagnosis for, oh my goodness what has it been? Two years?

Although I mostly lurk, the dual diagnosis group has become a place of refuge for me. I find parents sharing their days with one another in the midst of the challenge of autism, which, among other things, usually steals a child’s ability to connect with those around him or her, and Down syndrome, which in most cases among other things, includes a deficit in cognition due to too much chromosomal matter, i.e. that dangling, mysterious third squiggly line on the twenty-first pair of chromosomes in a person’s DNA.

The reason I like the private group of parents is because I can be real about life with a dual diagnosis and know there are others walking a similar path.

Imagine, if you will, two scenarios:

Scenario one: Your eight-year-old child walks into the living room while you are entertaining guests, looks people in the eye, possibly reaches out a hand, and says “Hello Mr. and Mrs. So and So. How are you?” or “Nice to meet you.” He then sits and listens to the conversation for a moment before getting bored, and heading off to find something else to entertain him.

Scenario two: My eight-year-old child walks into the living room while we are entertaining guests, looks around, but stares through the people. She walks over to the couch with large areas covered in duct tape because it had been shredded, climbs up on the couch, reaches up and grabs the floor lamp and smashes it to the ground. She then leans over, as her parents scurry towards her and the lamp, grabs a chunk of one of the guest’s hair, and pulls with all her might.

Fairness

I have a childhood friend who, although we laugh about it now as adults, was obsessed with the concept of fairness. If you are eating a green apple in front of me, than you better have another one to share, otherwise that wouldn’t be fair. In my youth, fairness was a bit of a foreign concept. I’d like to think it was because I was just that evolved as a youngster, but it probably has more to do with the fact that I was the youngest of three kids, my brother and sister were years older, and there just wasn’t a lot of need for ‘fair.’

As an adult, as a mom to four, as a mom to kids with disabilities, can I be honest? A dual diagnosis isn’t fair. Evangeline received a double whammy; she struggles to interact with us, is nonverbal, and at times aggressive in her behavior. She’s been robbed of both sides of the coin; sociability and cognition. No, it’s not fair.

But I try not to focus on the difficult aspects of raising Evangeline publicly. I don’t share all the hard things she does at home often. I don’t want people to think she is a burden. And I don’t want to damage the cause a lot of parents work to put out in the world; that our children are valued and hold meaningful places, just like anyone else, in our families and in society at large.

So I play down the hard parts.

But if I always play down the hard parts then the narrative of our family’s life is incomplete because Evangeline and the wholeness of who she is falls into the shadows.

We host a Bible study in our home on Tuesday nights. Last night, in continuing our study on the book of James, we talked about the importance of cultivating patience in our lives. We were challenged to consider impatience on a day-to-day basis: waiting for a meal at a restaurant, standing in line at the airport, wanting to know TODAY if you got the job.

And we concluded that one of the reasons for impatience is a deep seeded belief that people around us, (and even God himself) love us for what we do. If that’s true, we best do as much as we can, as well as we can, and be seen in the best possible light.

This can be an issue in regards to disability, as well.

The world is going to love and accept our kids based on what they do, so we best scoot the ones who are doing the most towards the front of the crowd. We are going to showcase the child with autism who is a music prodigy, not the one who sneaks out of his house at least once a week nearly scaring his mother half to death. We are going to talk about the adult with Down syndrome going to college, and not so much about the adult with Down syndrome who wasn’t able to get potty trained.

I have two daughters with Down syndrome who function very differently from one another. I know firsthand what it is like to put forth more attractive attributes of our kids. I’m guilty of doing this, too.

But what I hope to do, what I am trying to do…

What I’m convicted to do is to put forth all my kids, to bring them all to the front of the crowd and share with the world that they are loved by their father and me not for what they do… but simply for who they are.

My belief system is wrapped up in the person of Jesus. I know not everyone reading this post shares my world view. Regardless, though, I think the message applies. If you read Scripture, especially the Gospels, you can’t help but notice that Jesus loved people not for what they did. He loved them because of who they were. His love had no conditions. He simply loved.

So, I’m going to try not to hide all the hard parts of parenting Evangeline (and Polly, and their older sisters Elaina and Zoya, for that matter). I’m going to try not to downplay the dual diagnosis. I want people to know Evangeline has immeasurable value in being herself, today, right now, smashed up lamps and biting included.

And I am pushing my relationship with Evangeline to the front of the crowd, albeit imperfect, challenging, and at times frustrating (just like all her other sisters), because she deserves it as much as anyone else and because our lives equal out. Not only does Evangeline smash lamps, but she also gives kisses now. Sometimes she lets me rock her to sleep. She smiles when I walk into a room. There are good parts to our story and hard parts, but most of all, there is love.

And love pushes us to the front of the crowd.