Down Syndrome and Parenting: The Cold Current of Doubt

LP did his first sign many, many months ago.  “More.”   Sometime soon after that, he started using a fork independently.  The kid loves eating, so no surprise there.  Life was much, much easier being able to sit LP down with a plate of cut up food and a fork.  Very civilized, right?  He was starting to use a spoon as well.  Good.

Then it stopped.  Forks got hurled across the room.  No signing.  Just smeared food and yelling.  A lot of yelling.  For weeks.  And weeks.  I can’t lie—it sucked.  We’d sign and sometimes it seemed like he understood, and sometimes he just looked at us like we were aliens.  Mealtimes became a nightmare of throwing, cajoling and yelling.  I’d wonder, was I babying him?  Was I insisting on too much?  The way he’d moan and whine, it really seemed like he was suddenly incapable of communicating or self-feeding.

Around this time, he really started getting confident with his standing. He was cruising around furniture with a lot of ease and standing on his own for many seconds at a time.  One day, Mouse taught him to use a little tricycle as a walker.  Great!  So I figured, he’s working on the walking, just be patient.

I was patient, or so I thought.  But the days turned into weeks, and I started to wonder.  Is something wrong?  How could a skill have just disappeared like that?  Was it his thyroid (we have been trying to adjust his dosage and that is a whole ‘nother post)?  Maybe this was a sign of something else, for a skill to have just vanished?  Was there another diagnosis in his future?  Why wouldn’t he just go back to doing it???  I admit during these moments, I’d try to size LP up among his peers with T21.  Each time I was a kid who was around his age doing something that he didn’t do, I’d feel a pang of anxiety.  Was he ok?

It is hard sometimes when it feels like the world is telling you that your kid is more wrong than right, not to let some of it seep in.  In the media, most of what I see are awful stereotypes and misinformation, or hideous debates about prenatal testing and abortion.  The positive is largely sickly sweet stuff that leaves me feeling more sad than anything else.

As much as our friends and family have been supportive, it isn’t a walk in the park there, either.  I can’t shake that raw feeling when it seems like the only questions I get asked about LP are about his development.  Does he walk, talk, do this, do that?  I feel a real twinge of pain when someone goes out of their way to praise the girls only, because the next thought I have is, What about LP? 

I don’t know how fair it is for me to feel this way.  There’s nothing wrong with the girls being talented in some way that their brother isn’t.   By and large, when people discuss babies, it is about development, Down syndrome or not.  For the most part, people truly care about LP, and I imagine it is easy to get caught up in trying to figure out what the “right” or “wrong” thing to say is.

Yet, I can’t help but notice that the tenor surrounding LP is different.  There’s so little faith in him.

It isn’t about an inevitable when for him, it is a big if.  I’m guilty of it too—without constant change to reassure me, it is all too easy to let myself slip into a strange place in my mind in which he might never hold a fork again until he is five years old.  Despite that I know this thinking makes no sense, I have to fight it back; that cold doubt still tries to seep through.  People are shocked to see that he is a social, developing kid, delays and all.  I’ve had people be very honest with me about this disconnect between what they expect and what really is.  When they see him begging for grapes or giggling with his sisters, it strikes people that he is so very “normal” after all, i.e. not the vague blob of sadness that they’d imagined.  I have to admit then, that I imagined the same vague blob when we first realized LP had T21.  How wrong I was.

This week, LP started signing again.  In fact, he is now sometimes stringing two signs together.  He’s imitating words.  He even used a fork twice yesterday during lunch.  (We will therefore forgive him for throwing said fork after the second usage.)  I’m the first to admit that I heaved a sigh of relief.  And then some guilt for having doubted him at all.

What is the effect of having a world around you, even your own parent, that doubts your future on such a fundamental level?

I am reminded nearly every day that Down syndrome is supposedly a very bad thing.  No one has used the word “retard” around me in quite some time, but I’m still witness to the same jokes, simply with the word omitted, in which lack of intelligence or ability becomes the pinnacle of hilarity.  I still hear comments at the park about the dangers of having babies too late, with “old eggs”, knowing that the one very feared outcome is a child like my son.  I am still squeezed under the constant pressure to raise my kids to be achieve, be smart, above all else, it seems.  Because, unless LP grows up to be independent and have a job, he will be nothing but a drain on the rest of us, apparently (yes, sarcasm there).

All of that seeps into my unconsciousness, whether I like it or not, it seems.  It is a crappy place to be, needing to be your child’s soft place to land, yet finding yourself dragged under by a black current of doubt.  It feels like I’m constantly swimming against the tide, saying, He’s enough just as he is, I want him just as he is, over and over again, in different ways, yet feeling like my words get washed away in that cold, ableist current.  It isn’t hard to let my mind wander, lose my compass and doubt more than I believe.

One of the worst things about being marginalized in any way is that eventually, some of it starts to blend into our identities.  I don’t want that.  I don’t want LP to be mostly about what isn’t, what can’t be, what might not.

Right now, he’s doing exactly what he is supposed to be doing, and I’m trying hard not to forget that fact.

My Response to Ellen Stumbo’s “7 Ways to Help a Special Needs Family”

Ok, I’m going to go out and disagree with another blogger.  That is scary in bloggy land, but here I go, because this is an important discussion to have.

There are some things that Ellen Stumbo writes with which I very much agree.  I liked what she wrote about her experience choosing to adopt a child with special needs.  I wish adoption was seen as more of an option in our society, and I’m glad she wrote that article for National Adoption Month.

This article by Ellen Stumbo, however, about ways to help special needs families, makes me deeply uncomfortable. She starts by asserting that “we are no different than you”, but then goes on manufacture a host of differences under the “special needs” umbrella. She conflates special needs and disability, while making inaccurate generalizations about both. She suggests that special needs families need meals, babysitting, even gift cards. Read the rest of this entry »

Parenting: Better You Than Me?

There is some sort of line I seem to have crossed after having three kids into some type of strange martyrdom. Or self-immolation? Sainthood? Maybe it is just this place we live in, but it seems like a BIG deal to have more kids than parents in a household.  Add to the fact that one of my kids (gasp) has Down syndrome, and jeepers creepers.  And I stay at home?  No job, no break from the kids?  Sainthood, halo, superhero cape, all of it.  It.  Is.  On. Read the rest of this entry »