Archive | October, 2012

Down Syndrome Awareness: Guest Post by Robin

Robin is another good friend of mine whose has brought many a delicious, gourmet, homemade meal to my family in times of crisis.  She surprised me by sending this to me yesterday and asking if I would post it here.

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Monsters under the bed.  Bumps in the night.  Ghosts and goblins.  Are my children afraid of these?  Not anymore.  When they were younger, I would assuage them from their nightmares by saying that our dog would chase any scary creatures out of the house.  I would then tell them to think about playing racecars with their friends, then hug them and tuck them in tight.  So what are they afraid of?  The little person at Target.  Why, oh why, is that?  They can’t explain it to me.  They just hide behind me, and occasionally peek out and stare.  Her stature can’t be scary since she’s smaller than I.  And it’s not like she has tentacles or eight eyes or anything strange like that.  The only thing I can reasonably assume is that she is different.  I explain to them that there is nothing to be scared of, she’s just like us except smaller.   It doesn’t seem to get through because it’s the same every time we go.

How do you make that fear go away?   Yes, expose them to people with differences, interact, play together.  Show them we are all the same, each with our own unique set of gifts and problems, whether they are visible or hidden deep inside.  This approach works in the classroom with the boy in the wheelchair or on vacation with their developmentally delayed cousin.

Unfortunately, I don’t know any little people so I can’t set up a playdate.  I’m hoping that over time they will get over their fear as we talk about things and people that are different than we are, so that when they see something or someone different, they are not fearful but accepting.  I also let them know that asking questions is okay, since that is how we learn.

What do I want them to be afraid of?  The caregiver that gives them a little too much attention.  The friend that offers them an easy way to forget their problems.  The boyfriend that just can’t live without her.  The opponent on the field who will win at any cost.

I know we were supposed to write about how Down Syndrome affects us, but the kids seem to take that in stride.  A question or two about the bagger at Ralphs, then we are on to the next thing.  Like why we can’t have a quarter for the giant gumball machine or arguing over who can push the shopping cart into the parking lot.  I just need to figure out how to make them behave in Target like they do in Ralphs.

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A Thank You Letter to Ann Coulter

Dear Ann,

I know you’ve been getting hassled a lot lately for your use of “retarded” and “retard” in your political rants on Twitter.  Everyone seems to have their panties all in a bunch over it.  People are so sensitive!

Anyway, I’m actually writing to thank you – not only for using the words in the first place, but for using them repeatedly, and for refusing to apologize for it while looking America straight in the eyes.  See, if you had just said it the one time, and then copped to how offensive it was and apologized for it like people were harassing you to do, the whole thing would have died a quick death.  It wouldn’t have been anything more than a blip on the radar, soon forgotten.  The way you handled it, though – refusing to apologize, using the same words again, and then defending your use of the words?  Fucking brilliant.  Because by doing so, you’ve actually done all of us in the disabilities community – people with disabilities themselves, parents of children with disabilities, and advocates – a giant favor.  What you’ve done is lent your notoriety celebrity to our cause, putting it on a national stage.  People all over the country are talking about it, whether left- or right-leaning.  It’s all over Facebook, Twitter, blogs, and news sources big and small.  The conversation we’ve been trying to have for so long about respect and compassion has expanded exponentially thanks to your mouth you.

It doesn’t even matter that you don’t agree with what we have to say; the point is that you have almost effortlessly raised awareness to a level it’s never reached before.  Free advertising of a worthy cause on a huge scale!  The vast majority of people finally get it – they get how words can hurt, demean, demoralize, marginalize, and oppress.  And most people, once they become aware, don’t want to be vehicles of that kind of divisiveness and unkindness.  So, seriously, it’s totally okay if you want to stick to your principles – that’s cool.  You’ve managed to educate an entire population, though – that’s the main thing.

Thanks, Ann.

 

Scarlett @ Four Months

We now interrupt our regularly scheduled programming to bring you . . . CUTENESS.

 

 

Her Irish heritage is really showing, I think, with her strawberry-blonde hair, blue-blue eyes, and peaches and cream complexion.

 

She’s growing bigger, though I don’t know how big, as she doesn’t go back to the pediatrician for a couple more weeks.  She’s outgrown most of her newborn clothes, although I’m still stuffing her into some 0-3 month stuff because I can’t stand how fast this is all going.

It seems like so long since we had a baby on the fast-track.  I learned to savor the creeping speed at which Finn met each milestone.  Sometimes I wish Scarlett would slow down.  Not that she’s doing any amazing tricks or anything, but day by day, her babyhood seems to be going by at warp speed.

Having Scarlett has given me lots of time to reminisce and ponder Finn’s babyhood, too, and in a way I am filled with regret at how much we worried, how much time we gave to therapists who didn’t make a difference anyway, how Finn was subjected to demoralizing evaluations and assessments, his progress plotted on paper and expressed in terms of deficiencies.  I wish we had done things differently with him.

 

 

Anyway, Scarlett.  I am lucky to get these wonderful, happy photos of her (and it takes work!  Lots of singing and dancing on my part.  Can you picture it?), because offstage, she remains one demanding, crabby little lady.  Her limit at being put down and left to her own devices to amuse herself is 7 minutes and 23 seconds before she starts screaming bloody murder.  Little diva.

Wouldn’t trade her for anything, though.  I am head over heels in love, and I’m not the only one.  She’s got everybody in this house wrapped around her chubby little finger.

 

 

 

The Power of Words

Ann Coulter’s been at it again, and the online Down syndrome community is in an uproar again.  The latest from Coulter:

There are so many things I could respond with – and as Finn’s mom, I feel a responsibility to: how “retard” is never appropriately used, how it’s always a demeaning slur; how hurtful it is to use language that puts down an entire class of people; how continuing to use such language makes one a bully.  I could go on.

But Coulter knows these things.  Of course she does, because she’s been called out before.  And she doesn’t care.  She makes her living at being as controversial as possible.  She has built her image on being nasty, self-righteous, and offensive – all under the guise of being above it all.  She thrives on attention, even – maybe especially – negative attention.  If she’s taken to task on something offensive she’s said, like an obnoxious, bratty child, she just sticks her tongue out and repeats the offending words just to prove that she can.

It makes me tired, and I can’t bring myself to jump into the fray, the call to arms to bring her down.  It’s futile.  She won’t stop, she just won’t.  Neither will she take it back or apologize.  She gets off on this shit way too much.  She is quoted as having once said, “I’m a Christian first and a mean-spirited, bigoted conservative second, and don’t you ever forget it.”  If you tell her she’s being hurtful, well, it’s “Mission Accomplished” to her.  And sadly, wherever she goes, it’s likely that she’ll find an audience.  It seems to me, therefore, that the best thing to do is to ignore her.

I can’t advocate on such a large scale.  I’m one person, a humble mom of a kid with Down syndrome.  Celebrities aren’t going to listen to me.  But maybe you will.

Of all the aspects of advocating for people with Down syndrome, trying to educate people about the R-word and how it affects those of us in the disabilities community is maybe the most disheartening.  You can tell people it’s a hurtful choice of words, you can explain why it is, and there always seem to be those folks who invoke Freedom of Speech, or the silliness of insisting on political correctness.  They’ll argue the point with you, they’ll say they “didn’t mean anything by it,” or they “didn’t mean it like that.”  You can tell them that, just like there is no appropriate way to use the word “nigger,” there is also no appropriate way to use the word “retard,” and that using it – especially after they’ve been educated about its implications – is making a conscious choice to demonstrate utter disregard for certain fellow human beings.  You can tell them that using words like “retarded” and “retard” to describe people or things they find sub par is actually pretty uncreative on their part, given that there are dozens of other words to choose from in the modern lexicon that express what they want to express without degrading an entire sector of society.  You can tell them that using such language actually reflects their own ignorance – the very thing they’re using such words to decry.  You can tell them that being mean is unChristian.

Doesn’t matter.  It all often falls on deaf ears.  I’m not really sure what’s at the heart of it.  Selfishness?  Are people that afraid of feeling like they’re giving up a right that it trumps being a kind and compassionate human being?  It’s hard to believe that people actually want to be thought of as mean (except, obviously, Ann Coulter).  Do they?  Or is it a form of “talking big,” trying to be cool, a big shot?  Whatever it is, it’s discouraging, to say the least.

Most of my friends have become conscious of the R-word, and many have pledged to stop using it.  Some of them even go out of their way to call it to other people’s attention, and for that I’m grateful.  Some still let it slip sometimes, though, right in front of me.  Sometimes I say something, and sometimes I don’t.  Even when I don’t, though, I notice.  Oh yes, I notice.  If I don’t say anything, you should know it’s because I value our relationship and want to give you the benefit of the doubt – I want to believe that you caught yourself saying it and are inwardly at least a little horrified.  Or, I just can’t stomach a confrontation in which you might become defensive and invoke all the tired old excuses and explanations I’ve heard a thousand times before.  Maybe when I hear you let it slip, I’m momentarily overcome by a feeling of defeat.

I’m not asking for the moon, for crap’s sake.  I’m asking people to think before they speak.  As fellow members of the human race, shouldn’t we all have a policy of “first, do no harm”?  While we all value our freedoms, do we interpret “freedom” to mean “free-for-all”?  Don’t we believe, instead, as a civilized society, that freedoms come with responsibility – responsibility to be humane and compassionate?

Listen: I know Ann Coulter isn’t going to stop her vitriol.  But maybe next time she spews ugliness, just a few more people will see it for what it is: begging for attention at the cost of other people’s feelings – at other people’s right to be treated with dignity and respect.

Down Syndrome Awareness: Guest Post by Jodi

Jodi is a very good friend of mine.  She’s a college professor (she teaches Political Science), and one of the smartest, wittiest, and most pragmatic people I know.  We met when she joined my book club a few years back, and since then, she’s been an unending source of support and encouragement to me, not only with regard to Finn and Down syndrome, but through Michael’s cancer and residual health crises, and with regard to my writing.  I’m honored that she wrote this post for my blog.

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Expectations

 My son Jason was born a few weeks before Finn and I envied Lisa what seemed like a very easy pregnancy while I was sick every single day. But while my stomach stopped churning as soon as my son was born, Lisa’s life was turned upside down after Finn’s birth. Not just because Finn has Down syndrome, but also because of the medical problems — having to go to the hospital, seeing him with tubes and medical devices, etc. I sent her something I’d read long ago by Emily Perl Kingsley — “Welcome to Holland,” and then rushed off to the bookstore because on some level I think every problem can be solved with a book. I found what looked like the perfect book, “Road Map to Holland” by Jennifer Graf Groenberg so I bought two copies – one for her and one for me – and found a writer who described her journey honestly and openly. Lisa and I talked about having to mourn for the life she expected for Finn in order to accept the life he would have. But, now – four years later, I realize that every parent has to readjust their expectations of how life will turn out for their children and you really never know.

“Making the decision to have a child is momentous. It is to decide forever to have your heart go walking around outside your body.” – Elizabeth Stone

The reality is none of us can really predict what will happen to our kids. We try to keep them safe and teach them what they need to know to become productive, happy, well-adjusted adults. But there are no guarantees. Whether our kids get hurt or sick. Whether they become that sports star, whether they are straight or gay, whether they go to the “best school,” whether they are happy and fulfilled. Whether they give us grandchildren and live close enough so we can enjoy watching them as parents. Whether they become addicted to drugs or end up in jail. We all have these expectations for what we want for our children, but we have so little control over the outcome.

It’s interesting to see how the old expectations of children with Down syndrome were so radically different from today. Forty years ago, institutions were standard and families were discouraged from raising their own children. Life expectancies were considerably shorter and there wasn’t much hope for a fulfilling life. Now, the expectations have been broadened so much they seem limitless. Adults with Down syndrome are living productive, independent lives, falling in love, working, and pursuing all kinds of hobbies and interests.

Finn is exactly who he is supposed to be – extra chromosome and all. He’s developing on his own timetable and will become the person he’s supposed to be with the love and support of his family and friends. Just like the rest of us. That’s what I’ve learned. Parenting is accepting our children for who they are and trying not to worry too much about a future out of our control.

Down Syndrome Awareness: What Would You Do?

A few days ago, I received this email from my friend Stacey (reprinted here with permission):

Hi Lisa, I’d like to get your feedback on something that happened today.
I’m working from home today and it’s a beautiful day here so I decided to walk to pick Tiven up at school. Near the school, standing near the driveway of a grocery store, was a young Asian man with Down syndrome. I’ve noticed that the older I get the younger other people seem, so who knows how old he really was, but my impression was he was probably a teenager. I didn’t recognize him as I do recognize many other people in our neighborhood, but he seemed lost and confused, so I said, “Hi!” as I passed. He turned and shuffled away.
About forty minutes later, Tiven & I were walking back the same way and I saw him again, standing in the same place, still looking lost but now also scared. He was wringing his hands and flicking his tongue in & out. I noticed that he was watching the cars go by like he expected someone he knew to be pulling up. As we passed, I said, “Hi, are you OK?” and he shuffled away. I stopped a little way down the block and watched him. If he was lost, I wanted to be able to help, but how could I help if he shuffled away when I spoke to him? We’ve taught Tiven that, if she’s ever lost, to stay where she is so we can find her, but we’ve also taught her to look for someone “safer” such as a uniformed police officer or a mom with children with a cell phone who can call for help. I got out my cell phone and Tiven & I walked past him again, I tried to speak to him again, and he shuffled away again, but came right back to the same spot when we walked away.
A block away there is a police station that we often pass on our way to & from school. I decided to go in and tell them about the young man I saw. I told them what had happened, described his clothing & appearance, and I said he’s not dangerous, he just seems lost & scared. I said I’d tried to help but he might need someone else like a uniformed officer. The cop looked at me quizzically, and I could tell he was thinking, “Why would some teenaged boy on the street need our help if he isn’t causing any trouble?” And then I said it. “He has Down syndrome.” And I felt guilty about that. Why did I need to feel guilty about giving the cop a useful piece of information? I don’t think he needed help because of his having Down syndrome, but because he seemed to be alone and scared out on the street for quite a long time, and because he didn’t recognize that I was willing to help. He seemed like he wanted help but he either didn’t know how to express it, or he didn’t know if it was OK to accept help, if that makes sense. For all I know, he was just waiting for his mom to finish her grocery shopping because he didn’t want to go inside on such a beautiful day!
Now I’m sitting here crying about this. I hope he’s OK but I also really hope that I didn’t make matters worse by asking the cops to check on him. I’m thinking about Finn being a teenager, perhaps lost in the city on one of your visits here, and I wonder if I did the right thing or not.
Stacey

I responded to her that I think she absolutely did the right thing – exactly what I hope someone would do if it were Finn – and that I think the fact that the young man appeared to have Down syndrome was absolutely relevant information.

And it got me thinking: what would most people be inclined to do in such a situation?  I guess on the one hand I want to say that really, it’s not Down syndrome-specific, or even disability-specific; it would be nice to think that a person would look out for someone who appeared to be in need regardless of disability, etc.  I know that the reality is, however, that very often, people just don’t want to get involved (I’m guilty of this, too).  I wonder, though, if folks are generally more put off by someone who appears to have a disability – especially an intellectual disability.

What do you think?

Also, if you are the parent of a child with Down syndrome or another disability, how would you like to see a situation like that dealt with, especially if it were your child?

Big, Fat Parental Fail

Kevin has been going through something lately.  He’s been distant, mopey, moody and snappish.  In short, a teenager.  While I know on a rational level that this is classic teen angst (and well remember it from my own youth), it’s been disconcerting for me.  I’ve always considered Kevin and I to be close, as far as mothers and sons go.  He and I have been together longer than anyone else in our nuclear little family, and I’ve always felt that the bond we share is unique and special because of that – because of what we went through together years and years ago in our “former life” (not that he remembers any of it – he doesn’t), and, well, just because a mother’s firstborn always holds a special place in her heart.

While we’ve always been close, Kevin has also always been rather reticent.  He plays his cards close to the vest and doesn’t easily open up about emotions and such.  He’s private.  That reticence seems to have gone into overdrive lately, though, to the point of Kevin suddenly seeming like one big mystery to me.

A few weeks ago I tried to encourage him to talk, to open up to me about whatever is going on with him.  It was like a torture session.  He seemed to want to talk, but couldn’t find the words, or something.  Like he wanted to not feel alone, but didn’t actually want to reveal anything.  So he willingly sat out on the porch with me one night, and like pulling teeth without anesthetic, I dragged from him that he likes someone at school, but she doesn’t know it, and he’s not at all sure how to proceed.  This was all a conversation in code, with me guessing, and when I landed on the correct answer, he would indicate so with a grunt or momentary direct eye contact.  Torture.

I was honored, actually, that he trusted me enough to confide, with however much difficulty, this sensitive information.

However, about a week later, when I broached the subject again, just to check in with him, he suddenly claimed that “I don’t like her anymore.”  What?  Okay, fickleness – another classic teenage attribute.  Still, I thought it was a little strange that only a week earlier he had seemed so heartsick, and now suddenly everything had changed.  I suspected that what was really going on was that he regretted confiding in me (his mom! Blech!  Horrors!), and this was his way of just taking it all back.  Okay, I guess that’s his prerogative.  Sigh.

Meanwhile, the mopiness and moodiness has continued, and he remains almost – but not quite – a stranger.

Also, he came home from school a couple weeks ago (after our original heart-to-heart) with this shirt . . .

 

. . . and an announcement, in an eerily (at least in my imagination) calm voice, that he had joined the Gay/Straight Alliance at school.

What the . . . ???

Kevin embraces and is an outspoken advocate for tolerance.  This is certainly thanks, in large part, to having Finn for a brother.  Having a child with Down syndrome in our midst has, I believe, influenced my kids to be broad-minded, and compassionate towards and about those with differences.  I have long been extremely proud of Kevin for standing up and speaking out, even when it has meant being shot down by those who aren’t open to his advocacy.

But this?  This?  What did it mean?  Was this just another layer to his strong feelings about tolerance?  Or was it some other kind of statement?

I’m sure you can guess what started going through my head.

And it started to eat at me.  It started to keep me awake at night.  What if . . . ???

The thing is, I’ve said for a long time – half-jokingly – that with sheer number of kids we have, chances are at least one of them will turn out to be gay.  And I’ve always adamantly believed, and prided myself on believing, that I would be totally, 100 % okay with it.

Now that I was actually faced with this real possibility (at least in my imagination), I was filled with anxiety about it.  And, I confess, a certain sadness.  Very much like the sadness I experienced in the months after Finn’s birth when I was coming to terms with his having Down syndrome, here I was suddenly pondering a life for Kevin that was going to be very different from what I had always envisioned.  Here I was pondering the bullying and meanness and prejudice it would subject him to.  And I felt ashamed for not just being 100 % okay with it.

Then it all came to a head last night.  I got a call from Kevin’s school – a recorded message informing me that my son had been reported absent from a class yesterday.  What?!?  Now he’s ditching classes?!?  I stormed into his room, where he was, as usual, shut in, and demanded to know “What is going on with you?!?”  He was taken aback.  “I just got a call from the school informing me that you missed a class today!  What is going on?!”  I demanded.  He was bewildered.  Very calmly, he said, “Mom, I didn’t miss a class.  I’ve never ditched a class in my life.”  Of course he’s going to say that, I thought.  “Mom, why are you so upset?”  He asked me (again calmly, but bewildered).  And to my horror, I started crying.  Tears just sprang to my eyes and spilled over before I could stop them.  God.  Just what a teenage boy needs, his mom blubbering in his room.  And blubber I did.  Everything came pouring out, how I was worried about him because he’s been so moody, how I feel like I don’t know what’s going on with him because he won’t share anything, blah blah blah.  “And this club you’ve joined!” I said.  “What’s that about?  I worry that you’re going to get bullied for being in a club like that!  I worry that people are going to make assumptions about you!”

It dawned on him just what exactly I was getting at.  He was horrified.  “Mom, are you worried that I’m gay?”  He asked me.

Oh my god, oh my god, oh my god.  Here we go, I thought.

“I’m worried that you’re gay and that you’re afraid to tell me!” I said.

“Mom, I’m not gay!”  he said.  “I like girls.  You don’t have to be gay to be in that club.  I just want to support tolerance, that’s all.  And I’ve met some really cool people there.”

Oh my god, did I ever fuck up.  I wanted to hit rewind and unsay it.

More conversation passed between us after that, and I think we managed to clear the air.  But I still feel horrible, awful, about so spectacularly misreading the situation and for putting him on the spot like that.  He will no doubt remember that moment for the rest of his life.  One day, years and years from now, he will be telling his wife – or his therapist! – “Yeah, when I was fifteen, my mom thought I was gay, and she confronted me about it.”

Big, fat parental fail.

I’ve been thinking a lot about it since last night, and now that (I think) I’m in a more rational frame of mind about it, I think what’s going on with him is very likely extremely normal, and also probably exactly what is supposed to be happening.  He’s growing up.  He’s by degrees leaving the nest, breaking away.  He has to.  It’s part of life.

And it’s painful.  For me and for him.

As for the absence, I’m trying to get to the bottom of it, but at this point it looks like it was a clerical error.

Breathe.  Breathe.  Breathe.

 

Down Syndrome Awareness: Guest Post By Melissa

If you don’t know Melissa, she writes some of the most beautiful and thought-provoking things over at The Garden of My Heart.  I’m really honored to have her as a guest poster here on my blog!

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I’m an unabashed fan of Lisa. She has an important voice in the Ds community – a voice that I often wish was a bit louder, and more often heard. A friend of mine pointed me to Lisa’s blog when I was starting to really question a few things related to Rowenna’s diagnosis and was so happy to find someone who boldly put her beliefs out there.

So when she called for volunteers to guest blog this month I jumped at the chance. And then I sat down at my computer to write about Down syndrome and came up blank.

I panicked. I retooled some drafts I had sitting around. I started a half dozen new posts, only to come up with nothing but a few vague platitudes, and nothing that sounded like me, or represented my life with my daughter.

Finally, a friend pointed out that my lack of things to say was something to talk about. And she’s absolutely right.

When my daughter was first born, I couldn’t see an end – an end to the sadness, the pain, the frustration. An end to grieving what I thought I lost. I started to blog and couldn’t imagine I would ever run out of questions to ask or statements to make about life with Down syndrome. I read all the books and read all the online forums. I lived in Down syndrome world, despite wanting my daughter’s diagnosis to be the least of her distinguishing characteristics.

But here I am and Down syndrome has become background music. It enters my life when I choose – when I read a favorite blog, when I work with her preschool teacher on an accommodation, when I raise my voice and advocate at the state capital. It doesn’t rear up anymore, or pop out when least expected. Things that used to bring me to my knees are now things to either brush off or stop to mull over, but rarely is anything the punch to the gut it used to be. Time changes my relationship to the diagnosis, and there’s no way around it – only going through it.

There are days still when I wish she could communicate a little more (words, signs, communication device, whatever she wants) because I am just dying to hear what’s on her mind and I wish she could tell me what hurts. There are a few extra doctor appointments, and definitely extra lab work that makes me worry until the results come back. I also know there will be stumbling blocks ahead – especially around life transitions like starting school.

But the day-to-day? It’s just not right in my face anymore. The things we do are run-of-the-mill. We take walks, we read books, we buy groceries. People have all but stopped asking if she has Down syndrome. Maybe I’m just not wearing it on my face anymore – that slightly strained expression I wore around that said “accept my child!” – or maybe I’ve stopped noticing if people do a double-take.

Like I said, it’s background music. I turn the volume up from time to time because I genuinely love and respect the parents I have met and want to hear about what’s happening in their lives or because my daughter occasionally presents a bit of a puzzle so I read up on what she’s doing to better understand how to support her.

So for this Down syndrome awareness month here’s what I hope to leave behind: be patient with yourself. Time changes your relationship to the diagnosis. Some days it’s loud and discordant and you can’t imagine life will ever be different; some days it’s just in the background.