You don’t remember your first moments of life, but I do. I used to think it was because of the pregnancy-labor-holy-cow-I-made-a-human progression that primed me for such technicolor memories, but now I’m not sure. Adoptive parents describe that first moment with the same kind of detail and intensity, so maybe it is simply that we parents all experience a similar kind of intense imprinting.
I can still feel your inky black hair under my hand, wet and sticky. I remember the extravagant softness and frailty of your skin under my fingers as I traced along the base of your skull and down to your neck. The rhythmic swell of your rib cage was what I imagined a butterfly must feel the first time it opens its wings, alive but not quite ready to take flight.
I believe there must have been some spark of recognition that passed between our bodies after connecting for the first time as two fully distinct beings.
And after that, a constant haze of us. Comforting, diapering, feeding, playing. So much holding. You gave me a singular sense of purpose that I’d never felt before. That’s how it has been, for you and all your siblings. Until now.
Now, you’re peeking out from beneath the veil of childhood. Let me have my moment of honesty here: I don’t know whether I’m more concerned for you or for me. Part of me wants to be a selfless mother who is emotional simply out of love. I’m privileged to watch you step out, scared that you’ll get hurt, and excited to see you take flight. Of course, I do feel all those things.
As much as I want to leave it there, here is the other reality: I’m scared for you to pull the veil back and see me. Until now I’ve been just your Mother—infallible source of comfort and understanding. Even when I wasn’t doing it right, I was doing it right, you see?
You keep using all your new maturity to confront me about some legitimately flawed choices and attitudes of mine, and holy parenting-win-that-feels-like-a-loss, is it hard to hear. I feel this completely irrational urge to engage in a tit for tat argument with you, whereby I list out all the ways I’ve been a generous and empathetic and progressive parent, and therefore am completely unworthy of your criticism. But. They tell me I’m not supposed to do that with my seven year old.
You’re leaving me, daughter. We might still be breaking bread together every day and laying down under the same roof, but you’re still leaving me. You’re carefully stepping away from me, and I know that every time you look back, you’ll see me less as Mother, but as mother, the flawed human being who also happened to raise you. I know you’re still young and I know we have a lot of time left, yet I am still left with the feeling of not enough air in the room. I want to breath you in all over again like that first time, go back to that constant haze of us.
Why am I writing this? Maybe so that when you are grown, you can have proof that yes, I knew what was happening. And yes, it was just as awful and miraculous as you could imagine. And yes, I’m screwing up and I know I’m screwing up, but I’m doing my best.
Most of all, I vow now to listen to you without agenda, without judgement, forever. Except when that is really hard for me, and then I ask for grace. I’ve known you for longer than you have memory, before your butterfly heart fluttered and took off on its own. I cannot forget the time before you flew away.
50 years ago, New York Times writer William Petersen wrote an article titled “Success Story: Japanese Style” and in it, coined the term “model minority.” Today most of us know what this term means, but in case you don’t, here is a fairly good history of the term and its social and political impact for the last half century.
What I don’t think many people pause to consider is that the model minority myth did not flourish because it was true, or that Asian Americans fully embraced it, but rather because it was beneficial to the racist status quo. Who was writing about the model minority? In 1966, not Asian folks.
More importantly, for whom are we modelling?
I think there are valuable lessons here when we consider how disability fits into the mainstream narrative. What does it mean to “overcome” one’s disability? Or to proclaim that we are only disabled in attitude? Or to applaud examples of average daily tasks as inspirational or against all odds?
50 years since its birth, the model minority myth is not exclusive to the AAPI community. This kind of narrowly elevated yet not equal status is a tool used against the disability community as well. In the Down syndrome parenting world, this manifests as pressure for us to “catch more flies with honey” (i.e. Don’t sound too angry or the discrimination your child faces is your fault) or to be thankful that our children are labeled with positive rather than negative stereotypes.
It is true that yelling and screaming at an IEP meeting will likely not get ideal results. Yet, is the frustration invalid? Why does a parent “breaking nice” relegate a child to fewer educational rights? A bigger question: What does it mean to have IEP proceedings (and its required assessments) for only some children and not all? It is also true that cursing the person at the grocery store who used the r-word is unlikely to make them engage in a meaningful discussion of word choice and ableism. Yet, again, is the frustration invalid? A bigger question: Whose responsibility is it to maintain kind and just behavior?
Regarding positive stereotypes,yes, I suppose I would rather my son be approached with a smile under the mistaken belief that he is “always happy” than he be actively shunned. Sadly, it doesn’t work like that. Because by definition, a stereotype is not something any human being can fulfill, all positive stereotypes lead to failure.
In failure, we see the racism or the ableism for what it is, because the penalties for failure are steeper for the model minority than for his other peers. Growing up I learned to be very wary of men who were romantically interested in me for being Korean. On more than one occasion I have feared for my safety after disappointing a man by not being a submissive “good girl.” Ethan Saylor suffered the fatal consequence of not living up to this model minority phenomenon; three years ago, Saylor died at the hands of the police after failing to be docile or sweet after a miscommunication in a movie theater.
These two examples seem wholly unrelated, but I believe the commonality is powerful. Both are examples of how physically and emotionally dangerous it can be for the majority to dictate the attitudes and behavior of a disenfranchised minority, however “positive” those expectations can seem.
As we strive for a more inclusive society, I think there are valuable lessons in the model minority myth for parents in the disability community. Whose standards are we raising our children to fulfill? What is good for us, the parents, and what is good for our children? What do we do when our interests as parents seem to conflict with our children’s? How could our narrative today impact our children tomorrow?
Let’s have the conversation.
Hey, before I start: I got an early copy of this book to review, ‘kay? Okay.
I think that most parents who have a child with Down syndrome remember cracking that first informational book or pamphlet. I also think that the parents who recall that moment with any fondness are in a minority.
When I started really believing that LP had Down syndrome (but before we got any test results back), I went to the library and borrowed every book I could find with the words “Down syndrome” in the description. I’ll confess to you: I flipped through those books and never finished a single one.
I was like the Goldilocks of T21 books. Too sad. Too technical. Too saccharine sweet. This one freaks me out. This one is just offensive. Nothing was quite right, and I gave up.
So I went online, met a bunch of other mamas, totally ignored my husband for a few months, forged some lifelong bonds, and moved on.
I still wonder what would have happened to me if I’d never found those connections, and had stopped at that terrifically unsatisfying pile of books. Would I have had a harder time bonding with my baby? Would I have the support network that I have today? What would my overall view of disability been?
And the fact is, all across the country, parents are being passed those not-quite-right resources every day. Genetic counselors, pediatricians, OBGYNs, even well-meaning family members are purchasing and distributing books on Down syndrome. Yet, I have never read a comprehensive book that was actually written for parents, by parents, that I liked, until The Parent’s Guide to Down Syndrome. It covers the medical nitty gritty without being overwhelming and holds your hand through the emotional parts, as well as covers a wide age range. This book could very well be the only book that a parent could purchase; it is full of resources and can be treated as an index to keep returning to as your child grows.
It makes very little sense, actually. What is a doctor going to be able to tell you when you are in that raw, tender moment that could possibly equal the words from someone who has gone through the same moment with their own child? Of course there are good doctors, don’t get me wrong, but what makes the strongest, truest connection is usually someone who has had the same lived experience as you. And yet often I found that the parent books were hard to relate to because they held views that didn’t speak to me.
Much of the book reads like a coffee date with a hundred or so other parents (another disclosure, I’m one of those parents). In there, you’re going to find a voice that resonates. And I found myself recognizing parts of my own metamorphosis; I saw my initial holy-wow-can-this-be-true self, that changed to the my-kid-is-the-best-ever-forever-and-ever self, that changed to the oh-crap-I-guess-I-should-plan-a-little self, and on and on. I imagine that someone could read through all of the accounts and truly see the overarching path that many parents take, and notice that we mostly end at the same place—love and acceptance—without falling into the single experience of just one person.
Between the real experiences, you’ll find a ton of resources that span infancy through adulthood. That’s where the professionals come in, and hey, they might be our frienemies but we like to hear what they have to say every now and then, right? The topics and chapters are laid out very well, so a reader can go in and get information on specifics if they wish. I certainly wasn’t very interested in trust planning when my baby was four months old, for example.
Most importantly, the book does not sacrifice values at the altar of neutrality. Sometimes I think in an effort to be neutral, our parent community has an “everything is equal and valid” kind of presentation, and that can be dangerous. Instead of doing that, this book takes pains at crucial points to steer the tone and meaning away from possible stigmatizing language and ideas. The book recognizes that we are all human with the same basic needs and desires while also acknowledging that people with Down syndrome may have certain needs due to their particular disability.
It isn’t going to give you step-by-step instructions on your kid. It won’t tell you what to do, because the authors know that there is no singular path for any child, let alone a child with Down syndrome. But it will give you a decent atlas, if you will. Like, What To Expect When You’re Expecting sort of book geared towards topics specific to Down syndrome.
And now I come to my favorite part: the voices of people with Down syndrome! I was so pleased that the later chapters that cover adult topics actually had… Yes! Adults with Down syndrome sharing their lives!
I can’t overstate this: I will never know what it is like to have Down syndrome. At some point in my son’s life, he’s going to have to find his second family, among other people with intellectual disabilities. This book starts that conversation for new parents so they can read the words of other adults and have a glimpse into their children’s (wonderful) futures.
If you’re a parent in the community, I’d highly recommend buying a copy of this book at sending it to your OBGYN or pediatrician, as well as your local Down syndrome organization. Or, better yet, hop on over hereand enter in a really fun giveaway. The prize includes an “I love someone with Down syndrome” tote, fun stickers, a registration to this year’s 321eConference, other book resources, and of course, a copy of The Parent’s Guide to Down Syndrome.
You can read more about the book here, including where to purchase and book tour details.