Tag Archives: Down syndrome

In the Film “Any Day Now,” A Loving Portrait of Down Syndrome

12 Aug

The film “Any Day Now,” starring Alan Cumming and Garret Dillahunt (known for his role as the father on “Raising Hope”), is billed as story about the struggles and bigotry gay couples have faced when trying to adopt a child.

The fictional story, set in 1979, is told very poignantly and the plot moves at a fast clip. Alan Cumming is absolutely thrilling to watch; his character’s vulnerability and inner strength come across with all the subtly of a sledgehammer, but he is very authentic and you immediately want to root for him. Oh, and his voice! If you’ve forgotten about his Tony-winning performance in the Broadway revival of Cabaret in the late 1990’s (or were too young to have heard about it), this is your chance to be reminded how lush and haunting his singing voice can be. The movie is worth watching for that alone. And it’s currently available on Netflix, which makes it easy to watch.

But for me, what truly stood out about the film was its straightforward portrayal of a young teenage boy with Down syndrome. The boy, Marco, is a neighbor of Rudy, the character played by Mr. Cumming. Rudy takes Marco under his wing after the boy’s junkie mother ends up in prison because he can’t bear the thought of the boy being placed in the foster care system. What I loved is that Rudy does so without a trace of pity for Marco’s “mental handicap,” as it is referred to in the film. He does this because he is a caring person who sees a child in need, and that’s all there is to it.

The film does not resort to treacle in talking about Marco. In fact, his Down syndrome is barely mentioned, and to me, this was its genius. To be fair, Marco’s character, thought central to the plot, is a supporting one; the story is really about his parents. After Rudy falls in love with Paul, a closeted gay lawyer played by Mr. Dillahunt, he enlists Paul’s help in becoming Marco’s temporary guardian and eventually the two petition the court to become his parents. Along the way, they create a loving and playful home for Marco.

Never is the idea expressed that they have taken on an extra “burden” by caring for someone with special needs. (Perhaps because fighting a culture and a court system that viewed gay couples as essentially perverted and corrupting of children was burden enough.) At one point, Rudy and Paul take Marco to the doctor for a checkup, probably his first in many years, and the doctor rattles off a list of the boy’s current and potential medical problems. Rudy quickly retorts, with annoyance, “And the good news is….?”  The doctor pauses; he seems compassionate. “Well, I just want to make sure that both of you understand that raising a child with Down syndrome is a major commitment.”

“We got it,” Rudy says confidently, smiling at Paul. “We signed up for the gig, didn’t we?” The doctor wasn’t finished. “He’s never going to go to college, or live on his own. What you see is what you get.” Rudy nods his head quietly and the film cuts to another scene.

This part rang so true as holding up yet another mirror to our culture. When new parents are told their baby has Down syndrome, whether prenatally or after the baby’s birth, often what they hear first is a list of real or potential health threats with a generous side dish of “won’ts.” This was true decades ago, and it’s sadly still true today much too often, even though people with Down syndrome are living into their 60’s and are included with their typical peers in all walks of life, from education to employment. More than 200 colleges now have programs for students with intellectual disabilities. It is becoming more common for people with Down syndrome to get married, live on their own and learn to drive.

Support groups, advocates and medical professionals have been working together to provide a more balanced picture of life with Down syndrome to new parents. Some local groups, including the one I rely on for support, the Down Syndrome Association of Greater Charlotte, have a Parents’ First Call program that connects expectant parents to families who can talk about what it’s like to raise a child with Down syndrome. Last year, Massachusetts joined just a few other states when it passed a law requiring that balanced information be provided along with prenatal diagnosis of Trisomy 21. The Lettercase booklet, Understanding a Down Syndrome Diagnosis (available free as an e-book), is considered the gold standard for such information by medical professionals nationally.

 ♦

The filmmakers of “Any Day Now” were clearly concerned with raising viewers’ ire about the treatment of gay parents, historically and currently, and that they did – I have never been so angry while watching a film in recent memory.  But they also succeeded in doing something they may not have intended: to portray a older child with Down syndrome as simply a child like any other, a person in his own right. This may not seem astounding, but loving portrayals of minor characters with disabilities are not plentiful in the movies; often they are made into objects of pity or viewed as inconsequential or as token members of the cast. In this movie, Marco was the thread that tied everything together —  a funny, fascinating, lonely person who inspired great love.

Marco has his favorite belongings — I teared up at the opening scene when I saw what he was lovingly carrying around, because my son, who is 5, loves something very similar. Marco brings joy to his adoptive parents, he tries hard at school and is beloved by his teacher. He is incredibly sad and confused when neglected by his mother, like any child would be, but he thrives in the care of Rudy and Paul, finding his true home with them.

Ultimately, this film is about happiness and love, how we must embrace them wherever and whenever they are found and look beyond merely superficial “differences” like sexual orientation and disability. But be warned: this is not always a happy film, so make sure you are ready to handle the emotions you will feel and keep a box of tissues handy.

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A Down Syndrome Blog Hop: One Truth, One Tip, One Photo

24 Jul

I love blog hops, because they are a chance to read a lot of people’s thoughts on the same topic, and everything is neatly gathered in one place.

This one, begun on July 21, is a community hop hosted by a Down syndrome writers’ group that I belong to. It’s really the brainchild of Meriah at With a Little Moxie, so be sure to check out her site.

The theme of the hop is (3) on the 21st  — One truth, one tip, and one photo.

(You can also host the hop on your own blog, by grabbing the code at the bottom. Wish me luck as I try it).

ONE TRUTH

 I’m really bad about working on academic skills with my son

I try, I do, just not that hard. Why?  It’s too frustrating, because he either doesn’t want to listen to me or just isn’t ready to do the task. And frankly, I don’t want to listen to myself either. I am impatient and easily frustrated, and the amount of repetition that needs to occur in order for the lesson to be successful is mind numbingly high. So I mostly leave that to the schools and the therapists and the summer camps and I focus on it for about 80 seconds a day. Instead, we work on behavior (“No potty words!”), social skills (“Don’t bite your sister!”) and self-help (“Your pants are on backwards and your shoes are on the wrong feet, but great job!” And I really mean this; I think it’s awesome that he can dress himself at age 4 1/2).

He is doing fabulous; I am happy and the days have a poetry all their own.

ONE TIP

Sometimes helpmates are where you find them, not where you look for them. Open your mind.

Some of my favorite memories are created when my son really connects with someone who hasn’t been vetted, recommended, researched or background-checked. He has some wonderful teachers and therapists in his life, but the ordinary people (or other creatures) he encounters at ordinary moments have a magic all their own.

One of the first people who got him to count 1, 2, 3, 4, 5, when he was younger was my nattily dressed hair stylist, who owns a salon in the city and would let me drag all my kids with me from the suburbs — he really had an affinity for my son. I couldn’t believe it when I heard him prompting my son to count while I stepped into the restroom.

The list of delightful encounters goes on: the fellow mom in the waiting room who shares her iPad; the 6-year-old girl at our daughter’s gymnastics center who befriended our son for no reason in particular other than that she likes him, and now he runs into her arms immediately upon seeing her; the tiny toddler who brings out our son’s protective instincts and tells him “no” when his naughty side starts to show; the neighborhood dads who toss him a ball and whom he consistently badgers to pick him up (“Daddy – up, UP!!”); the neighborhood dog who guards him like a sentry while he wails after getting scolded for yet another dangerous infraction. Perhaps his most important helpmate besides his twin has been his big sister. Though still only 7, she has taught him how to swim, how to eat his food properly and how to play countless games. Throughout his life, she has succeeded where I have failed, stepping in effortlessly without being asked and making things better.

Trust other children to be your child’s most remarkable teachers. Watch for the few, or even the one, who clicks with your child and just enjoy the ride.

ONE PHOTO

Nino beach web edit

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On World Down Syndrome Day, Three Truths

21 Mar

Today is World Down Syndrome Day – 3/21, representing the three copies of the 21st chromosome that define Trisomy 21. With a Little Moxie is hosting a bite-sized blog hop (thanks for getting me writing, Meriah!).  She suggested posting three truths – one fact, one fallacy and one photo – in the spirit of promoting understanding and inclusion. So here I go.

FACT: Understanding comes in small moments. Pay attention.

This is hard to describe in words, but I remember the first time I felt some clarity about what it was like to be my son. Not to be his mother, but to be him.

I watched him play in the backyard with his sisters two summers ago. He had recently become a sturdy, independent walker and was a few months away from turning 3. Our nature-loving girls were flitting around, grabbing grass, leaves, worms and whatnot, pulling pieces of branch from our trees and collecting them in sand buckets. Being his sisters of course, they have never excluded him from their games, but nor have they often made special effort to include him; he must fend for himself, which is just as it should be. He followed them around like a puppy, picking up things and dropping them again, tripping sometimes but regaining his balance. Often he fell forward, but stood right back up. He oohed and aahed, not saying words exactly but mimicking their cadence, imitating their pretend play. He craned his neck to see inside their buckets, always a step behind but yearning to be right where they were. Yearning to be right where they were. It hit me in a flash. Here was a small boy, gentle-souled, wanting only to be a kid, and totally succeeding without ever noticing all the walls that had to be knocked down along the way.

FALLACY: People with Down syndrome are not smart.

Though they may not be intellectuals in the academic sense and often their skills cannot be measured accurately on standardized tests, people with Down syndrome can accomplish great things. Because they are good visual learners, many children can read at or above grade level. Most attend regular schools and do everything their typical peers do. These days, more young people with Down syndrome are going to college, learning to drive and getting married. Among the most impressive gifts people with Down syndrome posses is a finely tuned emotional intelligence. It is one of their top strengths – yes, strengths. We assume that people with disabilities are flawed and our thoughts about them stop there.

Well, all of us are flawed. And all of us, including people who have Down syndrome, or people who are totally nonverbal or immobile, possess unique talents. One of my son’s talents is a cleverness about how to manipulate people. If you don’t believe me, try sitting near him with your iPad or smartphone and see how readily he chatters to you about his favorite things like Mickey Mouse or animals, sidling up to you and nearly sitting on your lap like he is in love. What he really wants is for you to let him play a game on your device – he loves people, but he loves electronic things most of all. And you will let him play this game, because isn’t he just the sweetest thing? (No, no he isn’t.)  Don’t ever treat a person with a cognitive disability – or anyone, really – like they are dumb. Chances are they understand more than you can ever imagine and posses a profound relationship to their world.

PHOTO: Schoolboy, 2012

School has been such a blessing for him and for us. We love it!

Schoolboy

At the top of this post, I mentioned that World Down Syndrome Day is about understanding and inclusion. And it is. But after the recent tragic death of a young man with Down Syndrome at the hands of the police, it is also about action. Read more: a pitch perfect editorial from The New York Times and a very comprehensive article by Maureen Rich Wallace that explains it all.