Book Review: The Parent’s Guide to Down Syndrome

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.

Image: The Parent's Guide to Down Syndrome book cover. Blue fading to yellow/orange with blurry sparkles in the background.

Image: The Parent’s Guide to Down Syndrome book cover. Blue fading to yellow/orange with blurry sparkles in the background.

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.

Happy reading!

Cutting Roots

Five years ago, we bought a house in a little East Oakland neighborhood called Maxwell Park, and I immediately ordered a bunch of bareroot trees from a nursery catalog. It was my first claim to an actual piece of dirt, and I wanted that dirt to bear literal fruit as soon as possible.

I knew that trimming the roots and cutting down the main trunk was good for a dormant tree, but my goodness did it feel all kinds of wrong. Latke and I stood in the backyard with what looked like little more than a few dead branches and a branch cutter and held our breaths. Snip. Snip. Snip. All said and done, we had a little mound of wet dirt with a few sticks poking out and only the promise of stone fruit one day.

We did get fruit, literally and figuratively. I gave birth to three of our four children in that house. My kids laid their heads to rest every night just a few feet from those trees. A thousand pretend worlds were created in that backyard as those trees silently spread their roots and pushed out leaves every spring. During LP’s first summer, we had the most delicious peaches I’d ever eaten.

Yet, life felt like a struggle. Despite the knowledge that we were doing all the things we were “supposed” to do, none of it felt very good. It is hard to put my finger on what exactly was so difficult because on paper, we had a decent life. And I was grateful for that life, our friends and family, the kids, the house.

Maybe it was Latke’s 12 hour a day work schedule, or looking into our financial future and realizing that we would never be able to outpace the Bay Area prices. Maybe it was the drought and sun and urbanity; I felt the constant urge to drive into a forest somewhere, climb a tree, and yell at the top of my lungs. Maybe it was the endless traffic that prevented me from going to any forests.

Everything felt like a compromise but I could never quite convince myself that any of it was worthwhile. Latke left for so many hours a day so we could have a roof over our heads. I put up with the toxic parents at the park complaining about their cleaning ladies and stressful tropical vacation planning so I could see my actual friends and their beautiful children. We lived in a neighborhood that felt unsafe at times, because we loved Oakland. I put up with the intellectual elitism of the Bay Area because I thought I couldn’t find such progressive politics anywhere else.

At some point in 2015, both Latke and I looked at each other and voiced what we’d been feeling for so long: Is this it? Is this the end game? Have we arrived?

So we did some root trimming this year.

Latke left his firm’s partnership and started his own practice and now works from home. We moved temporarily into my parents’ house (thank you, Mom and Dad!), sold our house, and… moved to Oregon. Yep. Beautiful, rainy, green, Oregon. We live right now in a little apartment, eventually we are going to buy a house with some acreage. The plan is to unschool with the kids, work a little less, play a lot more, and stop making so many compromises.

It hurt to trim those roots, to leave the place I’d grown up. We left behind some very dear friends and I miss being near my parents. I have some very visceral attachments with the Bay Area that I’ll always miss. Coming through the Caldecott tunnel and seeing the Port of Oakland and San Francisco stretched out on the water. The tule fog. The Korean restaurants I’d been going to since childhood. Driving along Ocean Beach. The produce. And the produce.

On the surface our new life is not very extraordinary. Latke still works full days. We took a fairly large financial loss to make the move happen. Things are unsettled; we haven’t totally found ourselves here, Latke’s legal practice is still in flux, we have piles of boxes in the garage unopened. I am still tired (thank you, Sparrow). I lose my temper, and I worry.

I think we are, once again, looking at a bare mount of dirt with some sticks poking out.

Yet I’m so grateful we left. We were able to get rid of a car because Latke works at home now. We eat nearly three meals a day together. Things are more flexible; the kids get to see their father more often and I don’t feel like I’m a one woman show for 12 hours a day. The six of us have been discovering the Willamette Valley, rain or shine. At the end of each day, Latke and I actually look at each other with smiles on our faces more often than not. We have had enough time to nurture our marriage and remember how much fun we have together.

I had no idea how much Latke and I had changed until he quit his job and suddenly began spending more time with the family. Our politics, bodies, hopes and dreams have all been shifting over the last seven or eight years. Which is normal and inevitable with the passage of time, but when I married him I wanted to evolve together, not just be two people sharing resources. It shocked me to think that we could have gone along like we did and one day looked at each other like strangers.


Image Description: Aback and white picture of a boy (LP) and a girl (Chipmunk) on a seesaw. Behind them are an older girl (Mouse) and a baby (Sparrow). Everyone is wearing winter jackets, the park structures and houses are visible in the background.

At the end of the day, I kept coming back to these four people we have made. What are we going to teach our children? I don’t want to be the kind of parent who tries to prepare my children for the life compromises I never wanted to make. I want to be the kind of parent who prepares my children to make leaps that I can’t even comprehend yet. Given that, quitting your job and moving so you can unschool your children in the country seems like a baby step.

So that’s what we have been up to all these months I’ve been missing from this blog. There’s a lot more to it, of course. I’ve decided to get involved in DownSyndrome Achieves (an effort that will create a biobank for Down syndrome specific research purposes). I’ve been tossing around the idea of writing a collection of short stories. I want to slowly start thinking about what I’ll do when I leave PregnantOrNursingBabyLand. Maybe I’ll teach? Write? Start a family business?

I am remembering how to dream.

Race, Disability, and Belonging

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!

Sloppy kisses,