Where Hope Grows

Before we start—there are a couple plot hints I discuss here that I don’t think give away the movie, but take away a tiny bit of its suspense. I emphasize, tiny. Minuscule, really, electron-sized. I’ve warned you though, so my conscience is clean.

Watching “Where Hope Grows” made me feel like I was at the mercy of an inexperienced dance partner who, despite the best of intentions, kept stepping on my toes. Sometimes it was just a minor irritation, and sometimes it downright hurt.

David DeSanctis (Produce) is a wonderful, talented actor. There were beautiful moments when the actors danced just right and the chemistry felt genuine, mostly in scenes just between DeSanctis and Polaha. The rest was a mess of formulaic plot device and stereotypes.

The plot rushes Calvin through a completely unbelievable about-face from his years of destructive drinking to sudden sobriety, responsible parenting, and even being an advocate who tries to get others to let go of the r-word. In the rush, Chris Dowling employs a steady stream of overused tropes to illustrate a heavy-handed Christian message of faith and redemption.

Aging washed up baseball player struggles with old demons. Alcoholic father sobers up within days for his unusually mature for her age daughter. High school jock pressures girlfriend to have sex, then threatens violence when he can’t get what he wants. Cheating wife learns her lesson a moment too late. And, last, but not least, a broken man finds redemption by learning deep and simple life lessons from a disabled friend.

On the topic of disability, the good intentions of the movie are plain. It makes a play for the value of inclusion, tries to challenge the use of the r-word, and Chris Dowling obviously writes the character with Down syndrome in a way that takes aim at negative stereotypes. DeSanctis’s character lives independently, has a job, a great sense of humor, and a lot of self-awareness. As a parent of a child with Down syndrome, none of this shocks me but I do understand that for others some of this might be a surprise. So while touting abilities isn’t the most effective way to advocate for inclusion in my book, I did appreciate what the film was attempting.

But every time the film tried to take on any issue of importance I cringed. When Calvin lectures the black grocery store manager about the reasons not to use the r-word like “we” don’t use the n-word, I was honestly not sure whether Calvin meant the royal “we” or was referring to white Americans. Either way, not great. It felt like the dialogue was being forced into a moral fantasy of sorts, but just as that satisfying imaginary tell off works out so perfectly in our heads it never does in reality. Did Dowling never consider that it might be tricky territory to stake his point of the offensive nature of the r-word by having his white character lecture a black man about the n-word? Not to mention, unlikely to happen at all.

It is hard to miss the obvious juxtaposition of Calvin’s daughter Katie and Milt’s wife; both plot lines play out some pretty banal moralization about sex and marriage. Calvin’s potential love interest is a bland but pretty character who is conveniently not only friends with Produce, but also pops up at the local AA meeting. Neil Genzlinger of the NYT had it right: “This is a common and loathsome element in these types of films: If a fallen man will only embrace Jesus, a luscious romantic reward could be his.”

I tried getting over these (sort of not) minor irritations, as well as the numerous other trite moments like the “main character hits rock bottom and drinks himself to oblivion on a baseball diamond under the pouring rain” scene, or the “smash every bottle of booze you’ve got and never look back” scene, or even the hugging and the Rain Man reference. The makers of the film seemed to have their hearts in the right place, and my pleasure at seeing DeSanctis’s acting made me want to forgive the rest.

But by the end, it felt too much that disability was a literary device and inclusion merely a side benefit. In a film about brokenness and the power of faith, Produce is written in an almost otherworldly way. In fact, he doesn’t even have an actual name. I kept waiting for the moment when Calvin would ask him what his real name was and the teachable moment that would follow, but it never came. Instead, Produce is a Christian Obi-wan Kenobi, ever-wise and promising salvation if only the broken Calvin could see the world through his nameless eyes. His unfailing honesty, loyalty, and faith are good traits, to be sure, but I found myself unable to be pleased at this supposedly positive portrayal because it seemed to stem from a lack of natural human complexity, rather than simply superior moral character. Produce gets threatened, mocked, ignored, and disrespected, and yet he stays the course without batting an eye. Even if I am to believe a person could be so unflinchingly good, I cannot believe that it doesn’t come with great effort and sacrifice.

In fact, I found Produce’s rendering entirely too close to the angel imagery that is so often thrust upon people with disabilities. If you are not familiar with the angel phenomenon, it is the idea that people with Down syndrome (and other disabilities) are spiritually pure beings in broken bodies who are put on earth to lead the rest of us closer to God. When Produce is literally handing out the Word of God as he struggles to live, I half expected to see a halo over his head.

It felt like the message was that people with disabilities should be included because of what they can do for others, not simply because it is the right thing to do. Because what happens if the individual isn’t a spiritual stalwart? What happens if he isn’t independent, costs money to support, or isn’t perfectly charming under stress? I absolutely think that an argument in favor of inclusion is that it benefits all, but that’s not the main reason inclusion is important. Inclusion is important because it is right, end of story.

I’m much more a fan of how “Glee”, “American Horror Story”, and even “Shameless” treat the topics of Down syndrome and disability. They make their points without needing to get up on a pulpit and spell it out to their audiences, and because of that, their characters have room to be more fully human. Even when they do get up on the pulpit, they’re examining that pulpit as they’re up there.

I know that some think that “Where Hope Grows” is shattering stereotypes, but I think that the movie does the opposite. The derivative plot line ends up inadvertently reinforcing the stereotypes it seeks to break down. Something like a meat company that advertises by claiming “We’ve got the cleanest beef in the business, no salmonella here!” Unfortunately, all one walks away with are the words “beef” and “salmonella” bouncing against each other.

I wish the film had focused on the one thing it had going for it, which was the chemistry between DeSanctis and Polaha. Without needing to check off a laundry list of moral lessons, the film could have been an understated, thoughtful look at redemption, faith, and the power of inclusion. I kept thinking of “Spring Forward” and how well that movie had shown two equally flawed characters who offer each other their strengths and support their weaknesses. There is no such equal footing in “Where Hope Grows.”

I’d still recommend seeing the movie because DeSanctis is such a wonderful actor. My toes feel beat up, but I’m ok with that, because DeSanctis is worth it. Just don’t expect a cinematic masterpiece.  Maybe this review will spur you to see it for yourself so you can tell me I’m wrong. In that case, you’re still supporting DeSanctis, and we get to discuss how the film could have done better. That seems like a win-win situation. I’ll see you in the comments.


Down Syndrome Diagnosis Network: #ShareTheLove

Have you ever said bad things after calling an automated customer service line? Swearing, maybe? Throwing objects, maybe? It is like being in an M.C. Esher painting, isn’t it? Who knows if you’re going forward or back, up or down.

M.C. Escher - Relativity From Wikipedia: "In the world of Relativity, there are three sources of gravity, each being orthogonal to the two others. Each inhabitant lives in one of the gravity wells, where normal physical laws apply. There are sixteen characters, spread between each gravity source, six in one and five each in the other two. The apparent confusion of the lithograph print comes from the fact that the three gravity sources are depicted in the same space."

M.C. Escher – Relativity

I felt like that after we found out about my son’s Down syndrome. In the Pit of Google, I found simultaneously too much and not enough information. Medical risks, inclusion, therapy, advocacy, there was so much, yet it felt like trying to use an automated customer service line. I’d go to one website, get bounced to another, and half a dozen clicks later, I’d somehow be in the same place I’d started, confused as ever. All the while, I could yell and I could cry, but nothing changed. Websites don’t have social skills.

Then there were things well beyond the factual aspects of raising a child with Down syndrome. Trying to understand those slippery parts of love and acceptance through the lens of Down syndrome was mystifying. During those first days, I felt like I was winding my way through endless permutations of ill-fitting choices.

Press 1 for healthy. Press 2 for sick. I’m sorry, that option is unavailable, please press # to return to the main menu. Press 3 for despair. Press 4 for unicorn farts. Press 5 to access religious explanations. Press 6 for Holland and tulips. I’m sorry, I don’t understand your selection. Please try again.

I was not getting very far. I craved the nuance of a real human being.

Then I had a bit of luck. I made connections, in person and online. Those first interactions were not easy but they were crucial. I found parents who were like me not only because they had children with Down syndrome, but because I could relate to them in a broader way. They spoke my language. I had a template in which to fit the reality of disability into my parenting experience. Living, breathing human beings held out their hands to me. People made time in their lives to see me, call me, message me.

In that first year I experienced a sense of community that took my breath away. Cards and care packages went across states and even across countries. Strangers became friends through advocacy and activism. Gains were celebrated by all, loss was felt by all.

I have watched countless other parents experience what I did. Yet, what about the ones who don’t find those right connections and support? What about those who did not have the luck to stumble across the right people, the right organizations?

One of our greatest hopes at the Down Syndrome Diagnosis Network (DSDN) is to take the variability out of the diagnosis equation. The disability community has created so much, but not all are able to find what they need. All parents should find reliable, current information. All parents should find real-life connections. All parents should find a community that helps foster inclusion and acceptance for their child.

DSDN’s support network has been growing by leaps and bounds. Our small support groups add a layer of intimacy and connection that is hard to find elsewhere. Our Rockin’ parent groups are also endlessly flexible. Some parents choose to observe, some are vocal. Some parents find each other locally, some remain online. Some parents find like-minded friendships, while some find themselves in unexpected pairings, all equally wonderful.

DSDN’s Rockin’ Family support groups have grown from 1 to 12, reaching 1,500 new families around the world. Our support groups are growing at a rate of 500-600 parents a year—equivalent to nearly 10% of children born with Down syndrome in the United States each year. 

We have some big dreams. We are starting a DSDN Rockin’ Family Fund that will fuel our support activities for our member families. Your generous donation will help us bring to life activities like these:

  • Welcome: A basket to our new families with helpful information and a message of congratulations, possibility, and encouragement.
  • Support: Cards and care packages for children undergoing surgery or having extended NICU stays to remind parents they’re not alone.
  • Commemorate: Bereavement gifts for parents who have lost a child with Down syndrome.
  • Empower: Scholarships and stipends for parents to attend Down syndrome related classes, conferences, and events.

Here are some things from parents who have already been touched by DSDN’s support.

“I absolutely love my windchimes! Every time I hear the wind making that beautiful music, it not only reminds me of our sweet baby boy, it also reminds me of the Rockin’ moms group and that someone out there cares that we lost our precious little Jamie and how special he was.” ~Julie, mother of Jamie

“The care package received from my DSDN family was wonderful! It let me know that I wasn’t facing my baby’s challenges alone. The chocolate made me smile and helped me relax during a very difficult time.” ~Jennifer, mother to Bella

“I was 25 weeks pregnant and visiting Las Vegas for work when I went into labor. Four days later, my daughter Zoe was born, at 2 lb 2 oz.  Having a baby in the NICU and being so far from home was harrowing.  When I had received Zoe’s prenatal diagnosis of Trisomy 21, there were so many things I didn’t yet know. Like the sound of her giggle, or how much she loves to snuggle. Another huge thing I didn’t know was the tremendous love and support that comes from the Down Syndrome community.   When I was struggling in Las Vegas, they were there for me. All of the cards and care packages from afar blew me away. The Rockin’ mom care package was so incredibly thoughtful, filled with things like healthy snacks, a Tide stick, dollar bills for vending machines… Clearly from moms who had been there and understood. Even more so, the heartfelt love and support that came with it blew me away. I’ll never forget it.” ~Jamie, mother to Zoe

“My care package was a lifeline. It meant the world to me. Suddenly I didn’t feel so lost. I was connected to a family, a community, a group of giving and caring people who were there for me when I needed them.” ~Jennifer, mother to Emilee

No faceless, monotone customer service line. Systems that deliver real, tangible, personal support.

We need your help.

  • DONATE: Click here to donate. Any amount will help support a new family.
  • REACH OUT: Help us create partnerships. If you know of an individual or company who may benefit from sponsoring the DSDN Rockin’ Family Fund, get in touch.
  • SPREAD THE WORD: Share this post, along with your own words. If you have had good experiences within the community, consider sharing them as paying it forward. If you have had poor experiences, consider sharing them as an act of education. Feel free to comment below—you never know who you will reach. #ShareTheLove

image


#WDSD15: A Day in the Life with Down Syndrome

I’ll never forget those first couple days. I’d already started thinking that LP had Down syndrome but I hadn’t managed to utter the words. I thought, maybe, I’ll click my heels, wish really hard, and I’d be back from this alternate universe that seemed to be pulling me in. During the day, I managed to almost convince myself that I was, indeed, back in my sepia toned original life. Still had the same husband. Same kids. Baby, yup, same one I’d had a few days before I’d ever had the words “Down syndrome” enter my brain.

At night, things were different. In the dark, I’d hunch over my phone and follow whatever current my stream of consciousness took me. Try as I might, I just could not get a handle on what this life could be. I knew the dictionary definition of “developmental delay” or “low tone” but I simply could not grasp what that would look like. What would our lives be like?

This year for World Down Syndrome Day, I’m participating in a great project called A Day in the Life with Down Syndrome.  I also asked the Taters what they thought about living with their brother. Sparrow, of course was unable to say much despite that I know she has many thoughts and feelings on the topic. I’ve translated for you what I think she would say. I may or may not have taken some liberties there.

I hope that, through these pictures and my children’s words, people will see how Down syndrome in our lives just exists. We talk about disability in our house very often. Not in a holy-moly-we-have-a-disabled-child-now-what kind of way. Rather, as just a part of us. Just like we talk about race, gender, class, and other groups that apply to our lives.

Yes, Down syndrome and disability are real forces in our lives, I cannot and would not deny that. But it isn’t that alternate universe that I thought it was. It is this universe. This universe that you and I, reader, share. Turns out that no heel clicking or wishing for home would have mattered, because I was already home, exactly where I was supposed to be.

My pictures aren’t limited to a single day, but since I’m unable to sustain any kind of project for an entire day (I blame the kids), you’ll have to accept my piecemeal offerings and trust that I’m showing what is typical for our day to day lives. The Taters’ reflections are at the end, enjoy.

OUR LIFE IN PICTURES…

Picture focused on Sparrow with an alarmed expression, LP's face is blurry in the background, his hand is reaching for Sparrow's face.

Picture focused on Sparrow with an alarmed expression, LP’s face is blurry in the background, his hand is reaching for Sparrow’s head.

LP’s morning starts off on the potty, then tooth brushing, getting dressed (no I never get frustrated or lose my temper at this stage, never), all pretty humdrum little kiddo stuff. First thing in the morning, LP is usually looking for Sparrow, he loves him some baby sister time. He might not always get the whole “gentle” thing, but he gets points for effort.

2yo with Down syndrome (LP) in a green pajama shirt, sticking out his tongue. His 4 month old sister (Sparrow) watches.

Asian 2yo with Down syndrome (LP) in a green pajama shirt, sticking out his tongue. His 4 month old sister (Sparrow) watches.

When Sparrow was born, LP was still really on the fence about learning ASL. He had a handful of signs, but it seemed like it took forever for them to “stick” and become permanent in his mind. The sign for “baby” however, he got lickety split. It was also the first sign he generalized to other babies and even cartoon pictures. Ever since, he’s been all about signing. Like I said, he loves babies.

LP wearing a blue sweatshirt, cargo pants, and red Converse and his two older sisters walking in a line down the sidewalk, on the way to his school.

Three days a week, LP goes to something called the “Infant Development Program” at a preschool. It has that fancy title because it is funded through our Early Intervention services, but I refer to it as simply LP’s preschool, because for all intents and purposes, that is what it is. They have circle time, play with the rest of the preschool classes (made up of children with and without disabilities), eat snack, go for walks, ya know. Preschool stuff.

A woman sitting cross-legged, holding a board book in front of LP, who is pointing to different pictures on the page.

A woman sitting cross-legged, holding a board book in front of LP, who is pointing to different pictures on the page.

Twice a month, a speech therapist comes to our house. This is the only therapy we do. If you know anything about Down syndrome and therapy, you’ll know that twice a month therapy is very low on the therapy scale. This has been a very conscious choice on my part; I feel very strongly that there is a balance between this kind of push for developmental progress (I am actually not sold on the idea that therapy always changes children’s developmental timelines, but that is another post) and the happiness of the child and his family. Our balance lies somewhere in the “minimal therapy” zone.

A woman with three children (LP and his two big sisters) sitting in a circle, doing the ASL sign for "shark" as part of the nursery song Slippery Fish.

A woman with three children (LP and his two big sisters) sitting in a circle, doing the ASL sign for “shark” as part of the nursery song Slippery Fish.

They play, read, sing. I think from LP’s perspective, our speech therapist is a lady who knows a lot of ASL and comes with a big bag of awesome toys. From my perspective, she’s a resource to talk to about his speech development.

LP with his two big sisters under a fort made of a white sheet and various tables and chairs. LP is tilting his head and smiling.

LP with his two big sisters under a fort made of a white sheet and various tables and chairs. LP is tilting his head and smiling.

There are forts. There are fights. There are uncontrollable giggle sessions.

LP and his sisters in a large cardboard box, all doing the ASL sign for "shark" as part of the Slippery Fish song. LP is sitting on one sister's lap only wearing a shirt and underwear.

LP and his sisters in a large cardboard box, all doing the ASL sign for “shark” as part of the Slippery Fish song. LP is sitting on one sister’s lap only wearing a shirt and underwear.

Lately, there is A LOT of Slippery Fish being sung in our house. Sometimes I fall asleep thinking, “slippery fish, slippery fish, gulp, gulp, gulp…”

A white man (LP's dad) in the background. LP and one of his big sisters (Chipmunk) both sitting in a cart together. The cart has steering wheels in both seats, both children are pretending to drive the cart.

A white man (LP’s dad) in the background. LP and one of his big sisters (Chipmunk) both sitting in a cart together. The cart has steering wheels in both seats, both children are pretending to drive the cart.

On the weekends, we play, we do projects, we veg out.

Seven children lined up on a bed, all looking off in the same direction, watching TV. The children range in age from one to six.

Seven children lined up on a bed, all looking off in the same direction, watching TV. The children range in age from one to six.

There are fun times with friends. Really, really, cute friends.

LP in a swing, waving at the camera. He's smiling. It is a sunny day, and the park climbing structure is visible in the background.

LP in a swing, waving at the camera. He’s smiling. It is a sunny day, and the park climbing structure is visible in the background.

And days at the park.

Latke with LP sitting on his lap, holding a book. Chipmunk and Mouse sit close by, listening and watching their father read aloud.

Latke with LP sitting on his lap, holding a book. Chipmunk and Mouse sit close by, listening and watching their father read aloud.

LP shares a room with his sisters right now. We have family story time every night, then lights out. I know, you are just dying with jealousy at our exotic life, aren’t you?

WHAT DO THE TATERS SAY ABOUT THEIR BROTHER?  

Mouse (6 1/2 years old):
I like playing with my brother, even though he destructos our games. Sometimes it is frustrating because he doesn’t always get our games. The thing I like most about him is that he is silly when he destructos. That’s funny because what I don’t like about him is also what I like about him. He gives really cozy hugs.

Chipmunk (4 years old):
I like showing my brother how to do stuff. When I show him, he does it back. It is hard to catch him when he runs away. He is like Rarity [from My Little Pony], except not, because Rarity can find special stuff but my brother can hide special stuff from other people.

Sparrow (4 months old):
Yes, that one, hm, what can I say. I think he’s suspicious. He throws toys at me and Mom is all brainwashed, she thinks he’s trying to “share” with me. And then there’s the thing where he’ll come over and start out holding my hand all gently, then that turns into a tap, tap, bang, bang, BAM! That sucks. But you know what is the worst, most suspicious part? Despite this constant threat of violence, I still smile at him every time he comes over, my face just does that and I can’t control it, I think I’ve also been brainwashed! I guess it is because it pleases me so much when he sings Slippery Fish to me, that stuff is fuuuunny. I pooped and need some more milk. Anyone? Hello?

*********************************************

And there you go, life in the KimchiLatkes household! xo

DSDN is partnering with my friend Meriah from A Little Moxie to create a year long project called A Day in the Life with Down Syndrome. If you have Down syndrome, or know someone with it, I hope you’ll consider participating. The website will continue to be available for submissions past World Down Syndrome Day.


Follow

Get every new post delivered to your Inbox.

Join 2,190 other followers