#ReModelMinority: Considering DisabilityPosted: January 9, 2016 Filed under: advocacy, being Korean, disability, Down syndrome | Tags: disability, Down syndrome, Ethan Saylor, model minority, Trisomy 21 2 Comments
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.
Book Review: The Parent’s Guide to Down SyndromePosted: January 6, 2016 Filed under: advocacy, disability, Down syndrome | Tags: Down syndrome, Jen Jacob, Mardra Sikora, Trisomy 21 1 Comment
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.
Therapy for Children with DisabilitiesPosted: June 22, 2015 Filed under: disability, Down syndrome, Early Intervention, parenting | Tags: disability, Down syndrome, early intervention, Parenting, Trisomy 21 12 Comments
Imagine that someone—let’s call her F. Poe Tenshal—tells you that your baby needs to run faster when he grows up. Ms. Tenshal says that in the world, people need to run at a certain speed in order to do things. Important things. Ms. Tenshal enrolls you and your baby in a program. This program, she says, will allow your baby to reach his fullest, fastest potential. His true self. His best self.
Little do you know, there are two versions of this program.
In version A, you both arrive in some sweet new kicks, you’ve had a power breakfast, a good night of sleep, you are feeling good. The program staff start learning all about your baby, find out what he likes, doesn’t like, his goals, quirks and fears. They start helping him with his running form, it turns out that if he just lifted up his knees a little higher, his stride would get a little longer, and his time would improve. Then your baby gets a little older and it turns out what he really loves is jumping. So they spend a lot of time playing jumping games. And sure, your kid might get tired and discouraged sometimes, but the program is there with support, building him up with praise.
Version B starts off much the same. New kicks, breakfast, rested, ready to roll. But then you get out onto the tracks, and this dude—let’s call him Sergeant Payne—gets all up in your kid’s biz, telling your kid that if he doesn’t get those knees up the future is toast. He’s all in your kid’s face the whole time. Get those knees up! We are gonna get you running just like the other kids. Jump? No, people out there need to run, jumping is just for people who can’t run. Knees up! Despite his frequent claim to care about your son’s future, Sgt. Payne never seems to prioritize anyone’s enjoyment the program, rather choosing to focus on getting the exercises done no matter what. Sometimes your kid sees the Sergeant approaching and bursts out into tears. But you keep going, because well, you don’t want your kid to be a slow runner. All you ever think about lately is how slow he will run, and you wish you could fix it.
This, my friends, is how I’m starting to see therapy for kids with disabilities. There is therapy that builds us up, and therapy that tears us down. I think there are probably a lot of versions out there that do both at the same time. And through it all, I have kept wondering, does all this therapy actually do anything? Does it really change the course of my kid’s development?
Therapy works, except it doesn’t. But it does. Wut?
At this point, I’ve become online friends with hundreds of parents who have children with Down syndrome. I have yet to see any correlation between how much therapy a kid is doing and what that kid’s development looks like. In the United States, children are generally offered quite a bit of therapy. It isn’t uncommon for a kid with Down syndrome to get occupational therapy (OT), physical therapy (PT), speech therapy (ST), and other “extras” like swim or horse riding lessons (aqua and hippotherapy, respectively). In California, you also get something called an Infant Development Specialist (IDS) to come to your house, ostensibly for a broad overview kind of look at your baby’s development. Standard frequency is once a week, so even without the “extra” activities, that turns out to be quite a bit of therapy. In some other countries, kids are getting therapy once a month, if that. I’m not a computer and have no solid statistics, but if therapy really “worked”, one would think that there would be some general patterns. Yet I see nothing.
The thing is, a lot of therapy for kids with developmental delays is just really thoughtful play. I admit that there are a handful of times I have heard friends talk about therapy and thought, ok, that would be hard to replicate at home, but I’m talking something like 99% of therapy being quite ordinary. Stacking blocks, matching shapes, and eating Cheerios. Sure, maybe some foam blocks for weak hands, talking shape sorters for a little extra hint, or cheerios with ranch sauce because that’s the only flavor a certain small someone will accept. But still, it is mostly just regular kid stuff. By and large, the suggestions and ideas our therapists’ years of experience and my intuitive mama observations were not all that different. Sure, there were times that the therapist suggested specific ideas that were helpful, but did they somehow make or break his developmental progress? Doubtful.
As a general matter, I wonder if therapy (including therapy-like tools such as Gemiini, Talk Tools, or neurodevelopmental approaches) works mostly through a secondary effect phenomenon. Participation means a lot of time spent thinking about child development. Take even twice a week therapy, for example. (Which, for the record, could be considered fairly average or low on the scale in the United States.) Just having that therapy twice a week will cause a parent to repeatedly think about the therapy, plan on, recount (to a partner), and question the concepts introduced. That is a lot of mental energy geared towards developmental progress of a child. It would be easy to guess that so much energy would translate into a benefit for the kid, not because of the therapy itself, but simply because of the extra attention that happens in addition to the actual therapy.
Put it another way. There are 168 hours in a week. The average 1-3 year old sleeps 12-14 hours a day. So let’s say your kid clocks in at 12 hour mark. That is 84 hours a week spent awake. At the higher end, say you’re doing therapy five days a week, an hour each time. Five 1 hour sessions of therapy only totals 5.9% of that kid’s waking hours. A kid who only gets therapy once a week is spending only 1.2% of his awake time in therapy. Then say, you go full hog and have your kid in therapy for ten sessions a week, which is 2 sessions every weekday. Two therapy sessions a day is A LOT. That is still only 11.9% of their time. And trust me, if you’re doing ten sessions of therapy a week, you are busy.
Unless you’re talking about ABA therapy (and that is a whole ‘nother ball of wax, whooee), I just am not seeing how MORE THERAPY = FASTER DEVELOPMENT. Because let’s face it, for kids with Down syndrome without an additional diagnosis, therapy is mostly to address low tone and speech issues. What could happen during that handful of hours a week that is going to make your kid walk? Or talk? More likely, it is the other 79 hours a week that a kid spends cruising around furniture to get his mom’s smartphone that has been left on the coffee table, listening to his sister talk about Elsa’s ice powers, or picking up blueberries one by one because they are so darned delicious that will drive most of his development. And as much as therapy focuses a child’s parents on certain aspects of that child’s development, it works, but not because of anything magical about the therapy itself.
(I’m gonna say now: PLEASE DON’T GET MAD AND SAY I’M BASHING THERAPY. My kid is in therapy. I like our therapists. I know parents who do a ton of therapy, some who do none. I see in each and every circumstance why those parents have made the choices they’ve made.)
The secondary effects of therapy can be a mixed bag.
So therapy helps parents tune into their kids. That is positive. I think it also helps create more of a village for kids with disabilities. In a world where kids with disabilities are so often passed over, it can be hugely positive to have someone with a ton of experience come into a family and say, “Your kid is capable and worthy.” One of our therapists in particular has been this for us, and I love her dearly for it. She saw LP for the bright, hilarious kid that he is, and that fed my mama soul.
I think sometimes kids act differently around people inside versus outside of the family and that can be good and bad for therapists. Sometimes LP has been really resistant to playing with therapists (those people with bags of fun toys could be up to no good, I guess). Other times, he’ll be more willing to play a certain way with our therapists than he is with me or his sisters. I notice that most with his speech therapist. He pulls out a lot of words for her that he won’t for me.
There are some other negative secondary effects of therapy as well though. As positive as it might be for a parent to tune into their child’s developmental delays, it can also be really damaging. When LP was around a year old, we decided to cut back on our therapy from once a week to once a month. I could tell that everyone thought it was unusual, but I felt like the amount of therapy was doing more harm than good at that point in our lives. I didn’t feel like it was changing LP’s development; he was doing what he was capable of, nothing more and nothing less. In the meantime, I was growing resentful of the constant tallying of what he was or wasn’t doing, and especially of being compelled to constantly think about what he wasn’t doing. I had no need to be in denial, but it was really disheartening and frustrating to dwell on his delays. It just was what it was, and in the meantime, I realized that I was fixating so much on him being a slow runner, that I missed that he was interested in jumping. As parents we only have so much space in our minds, filling it with what our kids can’t do might crowd out energy to help our kids do what they can do.
The biggest thing that was bothering me was that the girls were starting to ask why their brother had therapy. Frankly, I didn’t have a great answer. I could imagine other circumstances in which I could say, “Your brother needs help with xyz and so Lisa is here to figure that out with us.” But for his particular constellation of existence, I didn’t feel like I could honestly say that. I didn’t think the therapy was actually changing him, so why exactly was a therapist coming to our house once a week?
Plus, it wasn’t just that one hour. It was the half hour before that I was yelling at kids to clean up the living room and while I threw that huge pile of laundry into the guest room. And the entire morning that I lost because there’s not enough time to go to the grocery store before therapy, but after therapy I had to feed the kids lunch and then it is nap time, then I had to pick up your oldest from her friend’s house, then figure out dinner, so the day was effectively over.
Then, in my dark twisty moments, I’d look at someone else’s kid with Down syndrome who was doing something my kid wasn’t and then wonder, oh no, have I made a huge mistake, am I screwing up my kid forever? I’m pretty sure that was just the mommy guilt whispering bad things in my ear.
Banish the mommy guilt, don’t let therapy run your life.
We are lucky to live in a time when a person can get online and instantly connect to thousands and thousands of people in the same life circumstances. For a parent of a kid with disabilities, that means that they can access an impressive hive mind when it comes to therapy-like ideas. The stuff that therapists do is, once you really look at it, relatively intuitive. Is your kid reluctant to crawl? Try putting them at a slight decline so that gravity helps them along. Do you want your kid to get better at using a pincer grasp and they love fruit? Give them a bunch of pomegranate seeds every day. Does it seem like your kid isn’t drinking very well because they can’t feel the liquid? Try something really cold, or fizzy, or even a little (not too) spicy soup.
Out of ideas, confused, frustrated? By all means, go talk to your kid’s therapists. But also, just step back and remember that all kids are developmentally frustrating to themselves and their parents. Right now, Sparrow can only crawl backwards. She is constantly getting stuck under furniture and screaming bloody murder. So every now and then, I put some exciting toy in front of her, put my leg perpendicular to hers for support and gently tap her knees to encourage her to move her legs forward. She does it a few times, falls on her belly and then gets excited that she got closer to the toy. I’m quite sure that if Sparrow had 47 chromosomes, there’d be a lot of talk about “working with her” and “making a plan” and “getting to the next step”. But I’m just trying to help her figure out how to do something she desperately wants to do—crawl forward. Chipmunk and LP both never crawled but scooted on their butts. Every time Chipmunk did it in public, people would comment on how cute and funny it was. Every time LP did it, people would look at me with questions in their eyes, wondering if it was “normal” or not. You get my point. A lot of normal human development is varied, because our bodies and minds are varied. You look out for habits that might be damaging in the long term, but the rest is all good.
Therapy can be great. Therapy can suck. When it is good, do it. When it sucks, do less. When in doubt, trust your child’s process. Kids with disabilities have valuable processes, too.