Friday, October 15, 2010

Monica & David

If you haven't been privy to all the buzz, a film aired on HBO last night titled Monica & David. It's a documentary, filmed by the cousin of the Monica in the title, showing a glimpse into the lives of two adults who have Down syndrome. Monica and David, the film's subjects, met at their adult life skills program, fell in love, and got married. The documentary shows the wedding, and a window into their life together for the year after their wedding.

I'll just say right off the bat that I did not find this film uplifting. Which is not a bad thing, just a fact. It's a film that makes you think. It makes one ponder the realities of life as an adult with Down syndrome, and the realities of their families. I was crying at the end . . . but not for the same reasons I cried when I watched Deedah. I find myself in a funk this morning, turning the film over and over in my head.

Most of the parents I've gotten to know through the Down syndrome blogging community are, like I, mired in life with a baby or child with Down syndrome. We are still striving, working towards something, full of hope and fantasy and idealism about the future. It is next to impossible for me to visualize Finn beyond babyhood/young childhood. That is not because he has Ds, it's just how it's been with all of my kids - I just can't fathom them very far beyond where they are now. Each step in the progression of life brings a new reality concerning all my children; ten years ago I would not have been able to imagine Kevin as a teenager, and yet, here he is today, a bona fide teenager. I can't really picture him as a man, but one day he will be just that, as will Finn.

In Monica & David, they've arrived. They are the adults that our kids will one day be. Not that our kids will be exactly like the two individuals featured in the film, but probably something somewhat close to that. Like all people, typical and atypical, they will continue to progress in their abilities and knowledge, but the progress will be measured in much smaller increments. For all intents and purposes, they are where they will remain.

So what I found about the film is that it's a very honest look at the lives of adults with Down syndrome. It was not a film meant to sugar-coat, and it doesn't sugar-coat. If you see the trailer or read a blurb anywhere summarizing the film, you might be led to think, "Oh, wonderful! Two adults with Down syndrome getting married and carving out a life together for themselves." But that would not be a completely true synopsis. Yes, these two individuals with Down syndrome fall in love and get married. And the love and affection and devotion between them is incredibly inspiring and moving, it really is. But what you also get to see is that they dream of having children just like a lot of other married couples - yet they can't, and they don't even know it. What you see is that neither of them seems to have a good grasp of what Down syndrome is, or that they have it. What you see is that yes, they are married, but they live with her parents and are almost completely dependent on them.

None of this is bad. It is what it is. But it's certainly eye-opening.

I think so many of us who at this stage have very young children with Ds hold onto the fact that our kids have been born in a different era; so many advances have been made in medical care for individuals with Down syndrome, as well as therapies to address their developmental impairments. A lot of us hope - some even adamantly believe - that it will be different for our kids. That if we do enough therapy, feed them the right concoction of vitamin supplements, and send them to the right schools, it will be different. They will one day hold real jobs and live independently. That's the ultimate goal of all this work we're investing in them now, right? That they will one day live independently.

Me? I don't pin a lot of hope on that for Finn. It's not that I'm a pessimist - I consider myself a realist. I believe it's possible that he'll one day live independently, but not highly likely. And in all honesty, I am okay with that. I have pretty much accepted that chances are really good that he will always be dependent on us. And gosh, we have the perfect setup: we actually have a separate apartment downstairs, with its own kitchen and everything. If I weren't in my right mind, I might think that some divine force was at work when we bought this house five and half years ago - long before Finn was even a twinkle in our eyes.

What scares the shit out of me is knowing that we are 40 years older than Finn, and if he lives to be in his 60s, well, it's not hard to do the math and realize that we won't always be here for him. That, my friends, sends a cold jolt through me at times and keeps me laying awake at night in semi-panic. I can't bear the thought of him ending up in some institutional setting, so I can only hope that his siblings will be able and willing to look out for him when the time comes. But what about their future spouses? What if they're not willing?

Auughhh. The stress of this will surely take years off my life.

And you know what? What really makes me sad about it all - and ultimately what I think left me feeling sad about the film - is that this honest dose of reality makes it really difficult to advocate for the lives of babies with Down syndrome. I suspect there are three main camps of people who will watch Monica & David:

- Families of adults with Down syndrome who will be able to relate on many levels;
- Families of babies and young children with Down syndrome who will feel like a bucket of cold water has been thrown on them;
- People who have no relation to anyone with Down syndrome who might have their feelings confirmed by the film that it's not a life they'd want - to raise a child who will always be dependent.

I know that Finn's life is worthwhile, as are Monica's and David's lives. But can the world see that? No amount of talking or advocating is going to convince anyone. Unless you're living it, it's just really hard to fathom.


Beth said...

Lisa, I haven't seen it yet, but I so relate to everything you've written here.
For example, I had to quit lurking in the "parents of children 5 and up" section of the forum when Jude was a baby because it was just bumming me out.

That said, when Jude was a baby, if someone had said that at five he still wouldn't be totally toilet trained and largely non-verbal, I'd have lost my s%#t.
I'd have thought, how will we LIVE?
But here we are, getting through our days just fine.

I think it will be the same with teenage Jude or adult Jude. We'll just get there as we get there, together, and it will be what it will be, but we'll have grown into that place together so it won't seem so scary.

Ria said...

You're right. It is what it is.
I am one of the parents who think that we're a different generation. Certainly there are advances and better research and resources these days than there was 20 or so years ago for people with Down syndrome. Monica and David's current reality may or may not be our children's reality. I wish I had a crystal ball to show me how Matthew will be as an adult so I can know if everything I'm doing is making a difference or not at all. But no crystal balls exist so I dream and just strive to do my best day after day with the hope that my son will have the necessary abilities to make the right choices and be able to take advantage of more opportunities when he is an adult. He may or may not live independently. That remains to be seen. But it sure doesn't hurt to work toward his independence. While I have these goals and expectations in mind, I am fine with the idea of him living with us too, just like you are.
And yes, the "show it how it is" view of this film does make it hard for us with young ones to advocate. Who knows, we might be the generation of change but we may not see the change until our kids are older, and depending on how they are as adults.

Lisa said...

I haven't seen it yet, either. But, like Beth, can relate to everything you've written here. And like both of you have expressed, I have no idea what the future will be like for our girls (hope & concerns at the same time about that). Honestly, I know we will manage whatever the situation. I fully expect we'll struggle with all sorts of things with our "typical" kids, too (hope and concerns about that, as well).

I know I wished I'd been able to see into the future when Bridget was born, just as I wish I could see the years that lie ahead now.

I'm confident that we'll find a way to work with whatever we've got with all the kids. We value them, love life, try to do the best we can to prepare for all contingencies, keep things in perspective. Since we don't have that crystal ball, that's the best we can do, right?

SunflowerStories said...

"We'll just get there as we get there, together, and it will be what it will be, but we'll have grown into that place together so it won't seem so scary."

I agree with this. I haven't seen it yet either, but am interested. I too have a hard time envisioning Sean's future. At this point, I feel like we are prepared to give him a fullfilling life even it is a dependent one. Doug and his brother work for his father's company. His dad has often talked about them buying him out when he retires. We've talked about the different jobs we feel Sean will be able to do there (and it's enough to merit an actual paid wage.) We see it as security for him for the future.

Like you, we are older parents. We certainly worry about his life after us and I think all we can do is to face that reality and try to set up plans for it.

Yes, it may seem harsh to think of a dependent SN child. Yet so many young adults today are staying with their parents longer and longer. When I was a teen, everyone "knew" that you graduate high school, go to college, and move out asap. My sister's children are 23 and 21 and have never moved out. They are not SN, they just choose to stay at home. This seems to be much more common than it was 15 yrs ago.

Maggie said...

I've been reading Finnian's Journey for awhile now, caught by a friend sharing a quote from something you posted a year or two ago. Not sure I "should" be commenting, since I don't have a special-needs child myself.

But I know a couple of adults with Ds and a couple more with other diagnoses on the spectrum known as 'cognitive deficit.'

One of these folks lives "mostly-independently" -- that is, he has his own apartment, a job, a bank account. He doesn't drive, though, and he has a staffer who visits him weekly and is available by phone to help him figure out such things as tax forms, dentist visits and so on.

Another has a younger brother who is his official 'guardian,' though he lives with people he calls 'friends' who are subsidized by his family.

I haven't seen the film, though I probably will later. There are no guarantees for any of us -- whether good or bad.

The Sanchez Family said...

Powerful post Lisa as usual. And spot so true. Thank you for this voice. It's pretty much what I feel about the film too...I'm still drying myself off from the bucket of cold water!

Tara said...

I chose not to watch it, yet, for the very reasons you mentioned. I knew it would be a bucket of cold water (I've worked with adults with Ds) and frankly, I'm not ready for that. I'm still taking it day by day (20 months into it).
I am basically expecting the best and preparing for the "worst" when it comes to Eon's future. Who knows what the future holds?

Anna Alexandrova said...

Oh Lisa, how well you write yet again...

Which of your three groups am I? Apart from Finn I don't know anyone else with DS, so probably group 3. But reading about Finn really opened my eyes to the fact that there is no sharp line to be drawn between children with SN and others. I also learned that it's not Finn who needs to be pulled up to the standards of our society through therapies and what not, but rather our society should be shaped in a way that is safe, acceptant and nurturing of Finn. So I hope to live and bring up my children to know and respect this fact. I hope this film has this effect too.

Angela said...

I was lucky enough to be at the beach while it was on, and the condo had HBO, which I do not have at home! So I was glad of that.
Anyway, I totally agree with you in that it was not a feel-good movie, but a very realistic one. It was sombering and thought-provoking for me, my husband, and my mom.
Benjamin is only 2.5, and I feel about him like you do about Finn. It's possible that he'll live apart from us one day, but it's highly unlikely. We don't have a separate kitchen, but our house is plenty big enough. He has two siblings, both brothers, and the thought that he might one day have to live with one of them and their wives/kids, etc, makes me stressed. And sad.
I am still just so pissed off about this whole Down syndrome thing I don't know if I'll ever be okay with it. :(