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.

Down Syndrome, Surrogacy, and Abortion: Remember What Went Right

A building created on an uneven foundation is bound to suffer, is it not?  So to discuss the problem, do we lament the building for not being strong enough, or do we recognize the flawed foundation?

Simplistic example, I know, but stay with me.
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Down Syndrome: Awareness to Acceptance

What is “awareness”? How can awareness be helpful? Can it be harmful? Where can it lead? October is National Down Syndrome Awareness Month. As I’ve watched and participated in various awareness efforts, I wrestle with the concept and all it entails.

Will an awareness month for my child’s genetic condition help create what I really want—a place at the table of a fully inclusive society? Can the “awareness” alone possibly give rise to the monumental shift that our society needs?

Myth Busting and the Power of Imagery

Awareness can teach that Trisomy 21 is not a disease, nor is it a medical issue in and of itself.  Individuals with Down syndrome are not predestined to think or act in specific ways simply as a result of carrying 47 chromosomes. Just like any other human being, how that 47th chromosome manifests in a person’s body is highly individual, can be positive as well as negative, and subject to environmental influence.  Children languish in neglect and flourish with love and attention. Life expectancy changes with medical attention and scientific advances.

In other words: people with Down syndrome are… people. Easy enough to say, but more difficult to unpack when confronted with hurtful or ignorant myths in our mainstream culture.

Awareness efforts tend to confront these negative forces in three main ways: 1) explaining the scientific underpinnings of Trisomy 21 (often involving lists of associated medical conditions), 2) discussing developmental delay (often slanted toward emphasizing the typicality of people with Down syndrome “despite” the existence of some developmental delays) and 3) generalized statements of affirmation and/or positivity regarding Down syndrome.

Taken together, these efforts generally give rise to a positive image of what life with Down syndrome can be like.  On the one hand, this kind of imagery can be helpful.  When my son was diagnosed with Trisomy 21, my lack of any meaningful, let alone positive, image of Down syndrome was very scary for me.  Yet, on the other hand, I worry that awareness efforts that center heavily on such imagery can inadvertently crowd out the basic humanity of the people in an attempt to re-image the syndrome.

Lists of medical risks may only serve to conflate Trisomy 21 and disease, when in fact they are not one in the same.  Emphasizing the developmental milestones that a child might reach close to a typical time frame may only serve to emphasize the milestones that lag behind.

If we are looking to awareness as a form of re-imaging, does it run the risk of compounding the negativity that it seeks to dispel?  I’m not sure we can reasonably expect the general public to do the hard work of separating out the person from the syndrome, particularly if the message our own community sends out mixes the two.

Visibility as Affirmation

Yet, I also see awareness as a form of visibility to be a powerful act of resistance against oppression. While we are thankfully decades removed from routine institutionalization in this country, it is still a practice in other places around the world.  Institutionalization occupies one extreme end of the spectrum: the ultimate in invisibility and powerlessness.

In contrast, an excellent example of visibility as affirmation is the New York City Buddy Walk that ends in Times Square. I have seen picture after picture of people with Down syndrome, smiling proud in public. The act of broadcasting the faces of people with Down syndrome in such a iconic, public space can be powerful and transformative.

I am here. I am worthy. I am loved.

Parents also “share” their children’s pictures on social media in much the same way, as a celebration and affirmation of worth.  Similarly, taking your child with Down syndrome to your older child’s classroom creates an image of Down syndrome for the other children, and that act erodes the insidious belief that a child with Down syndrome has no place in public education, i.e., public life. Imagery begets visibility, visibility begets affirmation.

Dismantling the Gates of Ableism

Ultimately, the goal is to confront the 800-pound gorilla in the room: ableism.  To be clear, ableism is not just some silly word that disability scholars invented to complain and be angry.  Ableism is a real—though often misunderstood (if not entirely ignored)—force that profoundly shapes our society.  To me, any awareness campaign that doesn’t address the root of exclusion—ableism—closes its heart to the call for true acceptance.

Recognizing that ableism is not limited to only those with disabilities brings us in step with other civil rights communities, thus giving us strength. Ableism, at its core, defines all people by their abilities—physical, intellectual, emotional, even social—and seeks to stratify worth based on false judgments.  Unworthy people, by ableist logic, deserve to be deprived of full participation in society.

Women can’t be rational so are better off subservient to men. African Americans can’t follow rules so must be imprisoned. Jews can’t be generous so deserve none in return. People with autism can’t emotionally connect so remain unknowable. LGBT people can’t be moral so do not deserve families. Poor people can’t work hard so are unworthy of compassion. People with physical disabilities can’t be whole so can never be beautiful. People of faith lack logic and open-mindedness so do not deserve to hold opinions. People with intellectual disabilities can’t comprehend, so meaningful inclusion is impossible.

Ableism thus touches us all.  Gay men, rich women, poor white Americans, for example, all experience privilege and exclusion in unique ways.  So too with disability, although perhaps disability is additionally unique to the extent it transcends all of the demographic and socio-economic lines that define these other marginalized groups.  In the end, we are all humanity’s children struggling for passage through the gates of ableism to true acceptance.  Rather than trample each other in the struggle, why not recognize those gates for what they are and dismantle the ableist thinking that creates them?

Knocking at the Gates of Acceptance?

Awareness can get us to the gates of ableism, but with no guarantee of passing into true acceptance.  A quick look at other civil rights movements teaches us that awareness alone does not guarantee equality.  No amount of awareness—or even forced inclusion—can bring about genuine acceptance and equal treatment.  Dismantling those gates requires power.

Why? Awareness need only involve passivity.  One can generate awareness, without any action on the receiving end, as if by packaging a gift (or image, if you will), and leaving it at the doorstep.  We can label it, describe it, and hold it out, but cannot force someone to open the gate, accept the package, and examine its contents. Awareness is a knock at the gate with no guarantees.

I believe that individually, human beings want to accept each other, but the gates are too heavy.  Those gates are heavy with privilege, power, and misinformation that erect barriers between people where none need exist.  The cure and prenatal testing industries are two sides of the same coin; the needs, values, and choices of individual families have been eclipsed by the almighty dollar.  The social services industry keeps itself afloat by relying on a message of deficiency in order to blur the line between needed supports and forced dependence.  Our educational system insists that inclusion is not always possible so offers cheaper, segregated settings rather than creating radical change.

People thus get left outside the gates, and it’s hard to push through.  Awareness alone may amount to no more than a passive, polite knock; we will stand at the gates waiting for crumbs of acceptance but never enjoy the real thing.

The power of love and outrage

What can dismantle those gates?  Love, outrage, and human connection.

They may seem at odds with one another, but I believe that love and outrage can hold hands to create an awesome power that can move through those gates to true acceptance.

I’m outraged that families are pressured to submit to prenatal testing for the sole reason of selective termination.  I’m outraged that my child could be deemed unworthy of an organ transplant because of his diagnosis.  I’m outraged that parents must fight to prevent the routine segregation practiced by so many school districts across the country.  I’m outraged that once included, no meaningful support is given to some children, so that they float amongst but not with their peers.  I’m outraged that adults with Down syndrome cannot obtain meaningful employment at fair wages.  I’m outraged that a child’s abuse and a man’s homicide are blamed on their genetic composition.

Still, I love.  I love as an act of resistance.  I will even love those who hurt me, as fellow human beings, as I walk away from their painful attacks.  I love, to say, yes we are all cherished members of the human family.  I love to create the strong web of human connection that holds us in times of pain, outrage, and exclusion.

October is Down Syndrome Awareness Month.  Let’s celebrate people with Down syndrome as an act of love and affirmation: You count, you are worthy, you are valuable.  Let’s educate with love and compassion to blow away the dark shadows of ignorance. Let’s shout our outrage at anyone who would exclude people with Down syndrome from our human family, through action or inaction.

Light the path of awareness and tear down the gates to acceptance.

Ferdinand Knab - Das Schlossportal

Ferdinand Knab – Das Schlossportal


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