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.
Race, Disability, and BelongingPosted: July 24, 2015 Filed under: advocacy, being Korean, disability, Down syndrome 2 Comments
Friends, family, and beloved Internet peeps,
I have a guest post on the Smithsonian Asian Pacific American Center blog today. Check out out. Comment. Share if you’re moved.
Click here to read. Happy Friday!
Dear Pixar: Inside Out and Papercut DeathsPosted: June 22, 2015 Filed under: advocacy, disability, Down syndrome, kids 24 Comments
***HEY, YO. There are some spoilers in here. Just sayin’.***
I like you. A lot.
My early childhood was spent in stuffy computer labs, arguing about Oregon Trail. Somehow, we all knew that those five pixels were supposed to be a bear. I can still feel the suspense, watching that one pixel move towards the five pixels, wondering if we had successfully shot the bear and wouldn’t starve. I am that generation, who learned now to program games into a T-91 calculator (yeah, I was a math nerd) and still remembers Atari. Now, it seems like every kid has an iPad and video games give me the jitters with how realistic they look.
You, Pixar, were part of that change. I was 14 when Toy Story came out. You took the graphic animation game and went next level. I was still young enough that Toy Story actually made me feel badly about all the toys I no longer used. I was busy kissing boys and stealing cigarettes but still had my cabbage patch kid on my dresser. Ok that is a lie, because I already thought it wasn’t cool to have toys out, but I had Karna Diane somewhere, I swear. Since then, I’ve watched every single Pixar movie and pretty much enjoyed them all. You’ve kept me happy thinking that there were some people out there who could still really imagine the shit out of things, you know? I’m under no illusions that you aren’t a big company with big company issues, but I like that you’ll touch topics like class struggle, environment and capitalism.
I’m adulting now. I have four kids and, surprise, they really like movies! They especially like your movies, Pixar. It is like you are aiming for their demographic, or something. So I took my kids to see Inside Out last week. It was good. Until it wasn’t.
There I sat, at the peak of the story arc, watching Joy and Sadness hang on for dear life while their buddies inside headquarters tried to figure out how to break open the glass and let them in. It was tense. Would they make it in? Would Riley get back in touch with all her feelings? Disgust had a righteous idea when she made Anger so mad he broke the glass open. Clever.
But why, Pixar, why???
Why did you have to make her call him a moron and then make that mocking impression of him saying “duuuuh”? Why did you have to make people with intellectual disabilities the butt of the joke? I know it is supposed to be all very haha because of course Disgust is Anger’s friend and doesn’t really think he’s like that, but don’t you see what is wrong there? In such a seemingly well thought out movie that seeks to remove stigma against mental health issues, couldn’t you have thought that scene out more carefully?
Look, try a little test. If Disgust had turned to Anger and started making fun of him for being effeminate, and then did the stereotypical limp wrist gesture, would that seem right? Or, what if Disgust had started to talk about how crazy Anger is, how irrational, how unhinged and how he just probably forgot to take his meds that day? Or, what if Disgust had started going on about Anger being short and unattractive, about how no one would ever want to spend the rest of his or her life with such a little, red, stubby dude?
Feels wrong, doesn’t it, Pixar? I think you know this, but let me just be clear: It is wrong to use one group of people to signify and embody what is supposedly is lesser or undesirable. That kind of humor steps on groups of people in order to elevate another and creates stigma and discrimination.
There are actual, live people who can’t help saying “duh” when they speak and sometimes have their mouths open. They are not doing it to be amusing to others, they are doing it because that is how they are. There are real human beings who will score below average on an IQ test. You made a joke at those people’s expense and left that joke completely unexamined.
All across this country, parents are fighting to have their children with disabilities included in classrooms with their peers. Kids are bullied and hurt. Adults are passed over for employment, or paid pennies on the dollar simply because of their disabilites. People are denied life saving medical treatment.
Pixar, for that one moment, you helped make that stigma and discrimination happen. When words moron and idiot are thrown around like nothing, kids learn that it is ok to insult someone’s intelligence. Young kids learn that a good way to make someone mad is to call them stupid and pretend to look like someone with an intellectual disability, because of course it is awful to be that. If brains were really like you depicted in Inside Out, every kid who went to go see your movie would have had a little glowy memory stored that they might bring up the next time they heard the words “special ed” or tried to talk to someone with a speech impediment. And the memory wouldn’t help the kid be kinder or more inclusive, trust me. What Disgust said to Anger was the basic equivalent of using the r-word, simply without uttering the word.
And you know what? I bet in every theater in which Inside Out plays, there are probably multiple kids watching who are getting special education services, or some kind of therapy. What are you saying to those kids, Pixar? That someone should rightly and understandably (literally) blow his top when told he was like them? My son with Down syndrome was sitting right by me that day, thank goodness he’s not old enough to understand, but his sisters were.
You could have done that scene a hundred different ways. You could have had Disgust outright ask Anger to open the window and if he said he couldn’t, had Disgust get all over him about not even being able to perform his one function—getting angry. You could have had Disgust provoke Anger by telling him that it was his fault they were even in that predicament since it was Anger’s idea to run away. You could have had her go after some characterization that was a choice like being unkind, lazy, or rude. Shoot, you could have just had her make fun of his style.
These moments are little, I admit it. It isn’t like the punch to the gut that I feel when I hear short bus jokes or see that stranger stare at my child like he’s contagious. Instead, jokes like the one you made in Inside Out are like little paper cuts. Little stings that remind me that the world thinks that my kid’s existence is something that no one wants. In case I forget, you know. Wouldn’t want that.
Let’s not break up, Pixar. You seem like a decent force for good. After my son was born with Down syndrome, I had a whole new appreciation for Finding Nemo. There are clearly folks over there who have given some thought to what disability means or doesn’t mean (I even personally know of some). You messed up this time though. I loved Inside Out but that scene was a little slice that bled.
So please, create more dignity for people with developmental and intellectual disabilities, not less. Don’t let me or my son die of a thousand tiny paper cuts.