Friday, March 21, 2014

The Things We Can't Say

The light was on in Lincoln's room as I got ready to leave the house this morning.  I could hear him happily talking to himself, babbling really, and I knew I would find him sitting in the little chair at his low play table, holding a Batman figurine in one hand and Green Lantern in the other.  When I opened the door, sure enough, there he was at his table, in his dragon pajamas with his action figures clutched tight in his hands.  His cry of "Mom!" was cut short by his detection of the ultimate precious in my arms.  It came out kind of like, "Maaah...iPad!"

The early morning sighting of his dear family is easily trumped by the early morning sighting of the beloved iPad, that wondrous screen of games, cartoons, and lest we forget, the gleeful magic that is Talking Ginger.

Linc followed me downstairs (okay, to be honest, he followed the iPad downstairs) and began his negotiations.  I told him, "I have to leave, buddy, give me a kiss."  And he responded, "No. Want iPad."

"Nice try," I said, "You're not getting the iPad.  Why don't you give me a hug and a kiss before I leave?"

"How 'bout... show?" he suggested, pointing to the television.

I held firm.  "How about a kiss?"

We both won.  He wrapped his arms around my leg, and I planted a few kisses on his forehead.  And as I left for work, the soundtrack of "Jake and the Neverland Pirates" was already blaring in the background.

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Six years into the adventure of raising a child with Down syndrome, I have been all over the map with how much to share and how much to hold close.  I would love to think that things are getting better for people like my son.  With the rise of autism diagnoses, with the tide turning against using the word retard casually, with more and more stories making their way into social media about people with special needs thriving and suceeding, it seems like maybe, just maybe we are making progress.

But then I read an inspirational article about a person with Down syndrome and, before I catch myself, my eyes stray down to the comments.  And I read the most horrible, hateful, things.  Things I can't get out of my head for weeks after.  Or, I visit my favorite pregnancy board and read how many mothers, women who are also pregnant and love to talk about their ultrasounds and their nursery plans and their commitment to breastfeeding, I read these same women unapologetically announcing that they would not hesitate to terminate their pregnancy over a diagnosis of Down syndrome.

I read these kinds of things, and I realize the progress is slow, so slow sometimes I wonder if we are going backwards.

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For six years, we have been the parents of a child with Down syndrome, and sometimes it can be easy to feel like we have to be the poster children for team Down syndrome, always smiling, always reminding everyone how much we love our son and how much he has enriched our life.  Today is World Down Syndrome Day, and it can be easy for me to feel like I'm supposed to write something inspirational about our son, post a badge on Facebook, and wear a plastic bracelet that says 3-21 so people will ask me the significance of the number and give me a chance to wax poetic about the incredible experience of knowing something with Down syndrome.

And the thing is, I do like to wax poetic about raising Lincoln, and I do believe he has enriched our lives in ways that a typical child just wouldn't have done.  But that's also not the whole story.  Because part of the experience of raising a child with Down syndrome (and, I imagine, a child with any other special needs) is trying to walk the balancing act of being team Down syndrome and also being brave enough to talk about the large and complex issues that come along with this experience.  Sometimes we look around us and come to the conclusion that the world can't handle the nuance of doing something hard and discouraging and confusing that is also amazing and inspiring and worth all the blood, sweat, and tears you pour into it.

Sometimes we're not sure we are allowed to both advocate for our son's right to live and be treated equally and allowed to say that raising him can sometimes be daunting, exhausting and lonely.  Because we see how people like our son are talked about and treated in the world, there are things we don't feel like we can say, sometimes not even to ourselves.

We know that he can be extra work in a class setting, so when we pick up our son from school or from church and hear that he's developed another challenging behavior, we just apologize and promise to work on it at home.  We don't say that we've already been working on it for months, that we have exhausted every strategy we've come up with and the vast majority of the articles and child-rearing books other parents use for advice are written for typical children.  We don't say that we have no idea what to try next.  We just smile and apologize that he was a disruption and promise to work on it at home.

We don't say how much we ask ourselves where his delays end and our deficits in parenting begin, but you can bet we tend to blame more of it on our deficits than the other way around because no one wants to admit their child is struggling, is unable to master something, even when you know it's to be expected.  We worry that his constant vocalizations are disruptive to other people.  Of course we work on being quiet in places where talking is not appropriate.  But what we don't say is that we have listened to his vocalizations ourselves non-stop for almost six years, that we get frustrated with the noise, too, and frankly if we knew how to get him to stop making those sounds, we would have done it already.

We are tired, but we worry about asking people to watch him.  We worry that he will not behave, that he will not be able to express what he wants and will get frustrated, that he will decide it's time to wrestle with your children or that he will rub snot on your couch or that he will simply sneak out your front door and wander into the street.  We know he's more work to babysit than a typical 6 year old.  We know some people may feel uncomfortable around a child who is different, even if they know and love us and wish they didn't feel that way.

We also know that, statistically, some people we know will have terminated a child with special needs. We know that others, though they didn't have to make that choice, would have been in the termination camp if they were faced with the decision. We know some people around us every day will be of the opinion that it was cruel of us to bring our son into the world, will think maybe he shouldn't be here in the first place, and may treat him badly because of that feeling.

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Today is World Down Syndrome Day, and I've been thinking about what that means for us and what it would look like to advocate for Lincoln without feeling that we need to be plastic or scripted.  What would it mean to celebrate his life, to be team Down syndrome all the way and be open about the joy of raising a child with Down syndrome, while also being free to admit that sometimes this is hard?

See, I don't think the message needs to be that raising a child with a little something special is always going be sunshine and rainbows.  Sometimes we feel like pulling our hair out, and we cry, and we wonder if we are doing enough.  And other days, it's sunshine and rainbows for miles.  And butterflies.  And Batman (because he's the best, don't you know?).  And iPads, and negotiating a ten second hug that will make your whole morning.

I think maybe the message needs to be that this experience is hard, but that doesn't mean we wouldn't do it again if we were given the chance. And why shouldn't it be both? Why can't it be hard and exhuasting, with a less clear roadmap and a slower, rougher pace; and also at the same time be worthwhile and miraculous and fulfilling?  Why can't it be terrifying and brave, while also being comfortable and reassuring?  Why can't it be the best thing and the hardest thing you've ever done?  Why should we feel we have to live by only one narrative?  Why can't it be the right thing to do and the right thing for your life?

And if you think about it, that's a lot to celebrate: being part of a great, joyful, difficult, trying, deeply moving and motivating thing.  Oh, happy day.


1 comment:

  1. Wonderfully written! I share your feelings, having a young adult with complex physical and communication disabilities (he does not have Down's syndrome) but who is also attending university this year! Always believe the future is bigger than the past! Check out my blog at www.thirdtimelucky.ca. Take care!

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