This is the year I’m going to write my book. I’ve talked about it for ages – both inside my own head, and hesitantly to a few trusted people (people I’ve trusted not to laugh at me). Why am I hesitant? Sigh. Well, I guess it boils down to self-esteem. I know I can write, and I know I have a story worth sharing. But can I actually put together a publish-worthy book? That’s the big question. And sometimes – oftentimes! – it’s easier to avoid trying so as to avoid failing. And yet, in not trying, potential success is also lost.
A friend of mine (who seems to believe in my writing abilities) turned me on to Kristen Lamb, a sort of writing guru who, through her blog, mentors wannabe writers. I’ve been reading some of her stuff of late, and this post really kind of lit a fire under my butt: Aspiring is For Pansies – Tough Love & Being a Writer. What it boils down to is this: nobody is going to take you seriously as a writer if you don’t take yourself seriously as a writer (and even then, people still might not take you seriously, but get over it). When I’ve referred to my writing aspirations, I’ve always referred to them as that – aspirations. I’ve never felt confident calling myself A Writer, for lots of reasons – among them: I never even went to college, so who the Hell do I think I am?; I’ve never been paid for any of my writing (although I have had different essays and such accepted for publishing on different websites); writing isn’t something I commit to do on a full- or even part-time basis – it’s more a hobby; and the list goes on. And yet, writing is as much a part of me as, well, reading. Or ice cream. Or cleaning house. It’s something I need to do. And it mostly takes the form of blog writing, but that counts, doesn’t it?
Anyway, getting back to my original point: after reading that post on Kristen’s blog, I resolved to make 2012 the year I finally get my book down in manuscript form. The book I’m talking about is Finnian’s Journey (I don’t know that that will be the final title, but my blog by the same name is the basis for it). And really, practically speaking, it should be a fairly straightforward project. I don’t plan in starting from scratch; all along what I’ve envisioned is converting my actual blog into book form. I’m not even saying my story is especially unique – after all, lots of people have children with Down syndrome, and lots of people have written books about it. What I think (hope) is unique about what I have in mind is that our story is told as it happened, day by day, week by week, month by month, in a journal format. I think this gives it a different – and possibly more authentic? – spin than a memoir told after the fact, when events and emotions are being recalled rather than recorded as they happened.
So I’ve been trying to carve out a little time here and there for the last few weeks to work on this, which requires that I go through my blog line by line from the very beginning, and decide what to keep, what to throw out, and what to expand upon. It’s proving to be quite an emotional process, reliving it all. And I’m discovering some things.
I really struggled with my son having Down syndrome. I mean, I know, in a sort of abstract-remembering way that I struggled with it for some unrealizable period of time, but reading what amounted to my diary through those early weeks and months, it pains me to realize how hard a time I really had coming to terms with it. How desperately I wanted nothing so much as for Finn to not have Down syndrome. How I chased a diagnosis of mosaic Down syndrome, because I thought that somehow wouldn’t be as bad. How I hoped and hoped and hoped that, although I was being told he had Down syndrome, he wouldn’t actually manifest Down syndrome.
When did I make peace with it? I haven’t gotten to that part yet, and I don’t have any concrete memories of waking up one day and saying, “Okay, I’m fine with this. My son has Down syndrome, and it’s okay.” Clearly it was a process that lasted a while. And I think what happened was that gradually over time, so gradually as to be imperceptible, I grew from grief to peace. Somehow, I did make the leap – perhaps by minute degrees – from being not okay with it to being okay with it – really, really okay with it. And when I say today that I would not change anything about Finn, including his wonky chromosomal makeup, I speak the utter truth. Do I wish I could shelter him from the pain and frustration he will undoubtedly encounter over his life as he faces prejudice and ignorance? Yes; I think it’s a parent’s lot to wish to be able to shelter all of their kids from cruelty – differently-abled or not. Do I wish he didn’t have a life a struggles ahead of him? No. Struggles are part of anyone’s life, and I know that we – Michael and I and his brothers and sisters – will be here to help him through whatever struggles he may face.
Another thing I’m realizing with painful clarity is that being an advocate was not automatic for me. My earliest accounts of Finn’s life, for instance, are peppered with “Down syndrome babies” and “Ds kids” – I knew nothing about People-First Language. There is an itch to clean this up as I go along, to change the terminology I used then to the appropriate terminology I use today. But that wouldn’t be honest, would it? And the whole point is to keep this real, to show the road I traveled, with all its warts and foibles.
It’s also helping me to see that ignorance is first nature – we only know what we know. Which means it bears keeping a little forgiveness in our hearts for those who haven’t traveled a similar path, who just don’t know.
My friend CJ touched on this in her I Have a Voice, You Have a Choice post this morning, and it’s actually something that’s been on my mind, so I’m going to share my thoughts. It sort of stems from my recent post about Noah’s Dad and the hoopla it generated both here and on Facebook – but it’s really bigger than this.
Speaking up for something one believes in is not something that should be squashed or stepped on by anybody. Advocacy often involves being a dissenting voice among the masses. It sometimes means going out on a limb and voicing something important but unpopular.
Does this take guts? I don’t know. I guess in some situations I would say so – like when my teenage son speaks out to his peers about using the R-word. That takes guts, because being an adolescent among other adolescents who view conformity to the masses and popularity as paramount, it takes someone with a strong sense of himself and his own principles to stand out against the crowd. Did I feel gutsy when I wrote that post about Rick Smith the other day? Not really. I’m just speaking out about something important to me (and apparently to a whole lot of other people), and maybe at my age I don’t care as much what people think of me as I do the issues. I knew full well there would be dissenting comments, and I’m totally fine with that. I don’t need to have everyone agree with me, and I’m not trying to win any popularity contests; just being true to myself.
What bothers me is that nobody who spoke out against my post really had anything significant to say about the substance of what I wrote. None of them denied or were able to explain or justify the particulars of what I wrote about how Noah’s Dad has conducted himself (and for the record, it was never about silencing Rick’s voice; it’s about his stepping on people left and right and inundating scores of people with the Self-Promotion Machine that is Rick Smith). Instead it seemed to be more about a few people feeling that what I had to say wasn’t worth saying – or hearing. I just find it interesting that there always seem to be people ready to jump into the mix only to say that the discussion itself is ridiculous, silly, wrong, or a waste of time.
What a wonderful world it would be if everyone agreed on everything and life was all sunshine and peace and love. But it’s not. And some people find controversy and confrontation so distasteful that they run from it as fast as they can – and that’s fine. Other people say they don’t like the controversy and the stirring of the pot, and yet, there they are right in the thick of it, waving their arms saying “This is a stupid conversation! It’s a waste of time!” To those people I ask: why are you here in the midst of it then?
Agree or disagree – doesn’t matter. The main thing is that the discussion is worth having. When you speak out, you often find that you are voicing the feelings of many, and there is value in that.
Apparently a lot of people care about what Rick Smith has done over the last year or so, and it appears that speaking out about it and opening up discussions about it has had an impact. Someone appears to be listening.
As you have undoubtedly become aware, there is currently an online backlash occurring and you are its target. There is a term, “Don’t bite the hand that feeds you,” that you might want to ponder. See, you’ve expended immeasurable time and energy over the last several months hitting up established bloggers with established followings in order to make connections in the Down syndrome community as a means of relentlessly promoting yourself and your blog as THE place to go for answers (this despite the fact that you are not even a whole year into the journey of parenting a child with Down syndrome; you still have a lot to learn, my friend!). You’ve shamelessly ridden on the coattails of someone else’s accomplishments to make a name for yourself. The problem is that you have failed and refused to return the favor of promoting other blogs and sources of support, information, and inspiration concerning raising a child with Down syndrome. You’ve denied publicly that any online Down syndrome community even exists, thereby blatantly disrespecting the very people who have helped you become so popular.
You’ve stated more than once in public interviews that when Noah was born, you were unable to find anything positive about Down syndrome on the internet. And yet you were well aware of the fact that many, many people were blogging about their honest and positive experiences raising children with Down syndrome, because you had no trouble finding those very bloggers (and their readers) to promote yourself to. You did it to me: you contacted me to ask permission to use a photo of my son, Finnian, on your site, which I granted; in return, I asked that you and your wife – being in the unique position of being a pediatrician and a parent to a child of Down syndrome – post something on your site about breast feeding babies with Down syndrome, as I feel very strongly that this is a topic not talked about nearly enough, and around which many misconceptions swirl. You gladly agreed to post something on that topic. You never did. And apparently, this is what you’ve done with a lot of people: hit them up to promote yourself, but don’t return the favor by linking back to them, ignore suggestions for topics relevant to Down syndrome to be addressed on your site (or address them without giving due credit), and no matter what, don’t allow even a hint of competition.
The fact of the matter is, Rick, that it takes a village. There is, in fact, an entire online community of bloggers and advocates who have been writing inspiring and true accounts of their experiences with Down syndrome, and reaching out to people, since long before you ever came on the scene. And that’s the most wonderful thing about it: we share resources, we promote each other, because every new parent of a child with Down syndrome should have an entire network of support at their fingertips. If you don’t want to be part of the community, that’s fine, but the way you’re operating is, in the end, going to backfire on you. People by the droves are already plenty up in arms about how you’ve chosen to gain a foothold on publicity and popularity and ignore everyone who came before you and who are tirelessly advocating alongside you; you are unquestionably going to start losing support.
If you really care about issues important to the Down syndrome community, if you really care about making a difference in the world, and not one that only benefits you, then I hope you will take this to heart.
I have to confess that I was a little surprised by the general reaction to my last post about Ryan Langston attending a special school for children with Down syndrome rather than attending whatever typical school I assume his brother attends. I had sort of expected more outrage by like-minded parents, and not necessarily the “Wait a second, let’s look at the benefits of Special Education” that the post instead generated.
So I started wondering: am I naive and idealistic? Yes, I very well may be.
Nevertheless, inclusion is what I want for Finn, and it’s what I believe in my heart of hearts should be the goal for society as a whole.
I understand that there are lots of anecdotal instances where families can say with absolute conviction that their child is/was better off in a separate, special ed setting. I have to believe, however, that these instances are only true because true inclusion – or “authentic inclusion” as blogger/writer/activist Lisa Jo Rudy calls it – has not been achieved. Placing a child with special needs in a typical classroom in which there is a lack or absence of the necessary attitudes and supports necessary to make inclusion work is almost certainly not going to go well. And the truth is that true or authentic inclusion very likely is difficult to achieve. It takes committment and genuine willingness on the part of the powers-that-be (i.e., the school/school district staff), it takes money to provide the resources, support and modifications necessary for the student to succeed, and I would venture to guess that both of these factors are rarely achieved simultaneously and continuously. So what we see time and time again is so-called inclusion, which isn’t authentic inclusion at all, which often fails. Which leaves a lot of parents feeling like their child will be better served in a separate, special ed setting.
And what happens to a child who grows up segregated in a special ed setting? Does he grow up with a feeling of belonging and equality with his peers? Does he grow up equipped to function in society? Or is he forever instilled with a feeling of otherness and ineptitude?
There are some wonderful articles out there on inclusion. Here are a couple:
The Need to Belong: Rediscovering Maslow’s Hierarchy of Needs by Norman Kunc (thank you, Alison, for introducing me to him!)
The Moral Imperative of Inclusion by Kathie Snow
Maybe I am naive and idealistic. And there is no doubt that true inclusion is not an easy thing to achieve. But isn’t it what we should strive for?
Many of we parents in the Down syndrome community waited eagerly for the segment that was to air this evening on NBC Nightly News with Brian Williams: a piece about the suddenly famous Ryan Langston, the little boy with Down syndrome in the recent Target and Nordstrom ads that have been a hot topic on blogs, Facebook, and elsewhere.
I caught the segment on the internet after it had aired. I, like so many other people, had anticipated a wholly moving and inspiring piece, a glimpse into this wondrous but average little boy’s life. And on the surface, that’s what we got.
To some, to many, any press is good press. And I wondered, as I watched and felt something like a stone sink in the pit of my stomach, “Am I overreacting? Am I being nitpicky? Am I the only one who’s watching this and feels like crying?”
Ryan Langston is a beautiful little boy with lots of energy, a mop of blond hair, lots of talent and a sense of humor, two parents who adore him, a twin brother (who does not have Ds), and a penchant for knowing exactly what to do for a camera. And this news segment was going to highlight the very normalcy of a little boy with Down syndrome. So what about this whole thing could possibly be getting me down?
Here, you watch:
Did you pick up on it? The part where Anne Thompson informs us that Ryan “attends a school for Down syndrome children . . . .”?
Why is it so difficult for People First Language to take hold for folks? I would like to think that a news outfit like NBC would do their homework before scripting a newscast that is meant to be an advocacy piece. How could a simple thing like appropriate terminology be overlooked?
But even more disheartening was hearing that this talented, smart little boy, who, as the news piece pointed out, can do so many of the things that most “average” kids his age can do – and some things most cannot do, like rock a Nordstrom ad – does not attend a regular school like most kids – like his twin brother – but instead, a separate school. A special school. A school for Down syndrome children.
I make no judgment against Ryan’s parents. I do not claim to know the circumstances that led to Ryan’s enrollment in a separate special ed school. It was just a very strange juxtaposition: a celebration of a child who is showing the world that Down syndrome is not so different, but a child who is separated, segregated nonetheless.
It hurts my heart. I don’t want that for Finn. I want Finn, and all children and people with Down syndrome to be fully accepted, embraced, and included. I want them to be welcomed to live and play and work and walk – and, yes, learn – alongside everyone else.
Is that ever going to happen?
Our little girl is growing up!
We’ve had her for just over two weeks, and in that time she’s doubled her weight – from 8 lbs. to 16 lbs.! Holy moly. She’s sweet, playful, very affectionate, and pretty smart, too (within two or three days she was answering to her name). I hate to belabor the mistake of Twinkle, but “She’s so much better than Twinkle” is an oft heard refrain around here, even by the kids.
We’re still working on house breaking, and although there has been progress, a stumbling block seems to be that she’s had some kind of intestinal issue since we got her. We’re still trying to get to the bottom of that. What do you do when you pay a shitload of money for a dog from a reputable breeder, and then get conflicting advice from the breeder and your reputable veterinarian as to what’s causing her chronic diarrhea and how to treat it? Unfortunately, she was only covered by a five-day health guarantee by the breeder, and we’ve had to shell out a pretty penny to the veterinarian trying to treat this problem (Scout’s now on her third med for it). Despite this, she doesn’t seem sick; she has a great appetite and is very playful and energetic.
Seriously, I’m in love with this thing only slightly less than I’m in love with our new pup.
We’re mad about Scout! (Shhhhhh . . . I’m vying for another one!)
And now I will bore you with a pregnancy report:
My midwife came over this morning for my monthly prenatal checkup, and everything is looking good. I got to hear the baby’s heartbeat with the fetoscope for the first time (I was never able to pick it up on the fetoscope during my last pregnancy) and it was pretty awesome. It just sounded truer somehow – not amplified or distorted like on the doppler.
The best news is that my blood pressure is looking really good these days. It’s been probably the biggest concern, as even with the bp med my doc switched me to when I found out I was pregnant, it was still hovering around 140/70. I’ve been taking some supplements for a few weeks now, however, and it seems to have made a world of difference in my bp, which is now consistently 125ish/60ish.
Have I mentioned how much I adore midwifery care? And specifically my midwife? She was here for about two hours this morning, not only doing my prenatal, but just shooting the shit. You just can’t get that from an OB.
In other news, my current condition has sparked curiosity from Lilah, age 5, about exactly how babies get in mommies’ tummies. She’s been asking for a couple of days and I’ve stalled her until I couldn’t stall her anymore. Dammit, why do I always get stuck with these conversations?
Here’s a recap from about a half hour ago:
Lilah: Mommy, you promised this morning that you would tell me after school how babies get into mommies’ tummies. Now will you tell me?
Me: Um, yes, well. Okay. So, when boys and girls are GROWNUPS, and when they love each other very much, sometimes they show each other that they love each other by laying very close together. And . . . ahem . . . well, a part of the man’s body fits inside a part of the woman’s body. [Sigh.] And . . . er, well . . . um, and then sometimes that makes a baby start growing in the mommy’s tummy.
Lilah [very seriously]: But only girls can grow babies, right? How come?
Me: Well, um . . . because only girls have the right parts to grow a baby.
Lilah: But boys have the right parts to make a baby, right?!
Me: Right. Now, how about some ice cream?
Michael left this morning for Washington DC. He’ll be gone a week. He and two of the partners of his firm are appearing before the US Supreme Court next Tuesday to argue a case. Pretty exciting stuff. Most attorneys never have an opportunity like this, so I’m thrilled for him.
That said, I won’t lie and say that there hasn’t been some dread on my part for his going away and my being left here to deal single-handedly. Oh, I’ve done it before – like those times he was in the hospital, and even times he’s gone out of town for this or that for a few days at a time. And although I’ve done it with six kids before, I’ve never done it with six kids and another baking in the oven and sucking the life out of me.
The daytime isn’t bad. Michael’s gone at work during the day anyway, so no difference there. But when the Witching Hour hits – which is approximately 38 seconds after the last bell at school rings, and which lasts until bedtime – that’s when things get hairy. And being faced with no prospective second pair of hands and co-wrangler to corral these little maniacs by dinnertime, I’m ready to lock myself in the bathroom with a bottle of vodka. (I didn’t actually do it, of course, I just fantasized about doing it.)
So we get homework done, dinner eaten, dishes cleaned up, and Michael calls. DaddySaviorHeroGod. “Daddy! Daddy! Daddy!” They’re all clamoring to talk to him because it’s been eleven whole hours since they saw him or talked to him. Me? I’m chopped liver. I just blend in with the woodwork around here. Even though I’m the one here slaving away for the little
There is a lesson to be had here, and it is this: Mommy needs to go away for a week so she, too, can be missed and appreciated.
On this day fifteen years ago, this little boy made me a mother.
These fifteen years have flown by in a few beats of my heart. Through all the ages and stages, Kevin holds tight to a special place in my soul. It’s something I can’t quite put into words . . . maybe it’s because he’s my firstborn and I wanted him so much and waited for him for so long. Maybe it’s because he and I had a life together before anyone else came along. Maybe it’s because he’s just a really great kid who fills me with pride and admiration at the person he is and the young man he’s growing into.
Happy Birthday, Kevin.