Marriage and Teeth

No, I'm not going to write about how my tooth brushing habits differ from my husband's. OK, maybe I will, now that I'm thinking about it. I brush and floss religiously and have lately started getting cavities. I hate it. Paul brushes less devoutly and flosses never. He never gets cavities, though he has had a root canal and isn't always minty fresh. Not that I am either, these days. As a teenager and younger adult I always carried toothpaste with me. I'd put a dab on my tongue every now and then to make sure that my breath was never offensive. Unfortunately for those around me, I grew out of this obsessive phase.

What I was really going to talk about is the longevity of both marriage and teeth. I used the phrase "permanently partnered" today and that got me thinking: not all of our "permanent" partnerships end up being so permanent. Then again, sometimes we lose "permanent" teeth too. And it seems to me that the root (heh heh) causes are pretty similar: painful trauma, extreme neglect, and untreated disease.

On a related note, I miss the days when I could distract myself with TV or a book while nursing Ellie instead of sitting quietly in a darkened room with an easily distracted toddler.

Therapeutic Drowning

How much therapy is too much therapy?

When Ellie first started therapy, her therapists were always deferential to how much therapy "we" could handle. They didn't want to overwhelm the family.

I didn't understand that. I was so isolated - with a sick newborn, I barely left the house. I loved the therapists' home visits; they were my therapists too. Also, I believed that the therapy was helping Ellie. How can you have too much of that?

Later, I learned that it's hard to go out and do things when your child sees 4 therapists at home each week, and I found myself occasionally resenting Ellie's sessions. I decreased the frequency of her home visits while increasing the overall amount of therapy she's getting (she sees at least one therapist a day at school). A perfect solution.

Right? But -

I made the mistake of talking to another mom of a little girl with Down syndrome. Her daughter gets more than just the Physical Therapy, Occupational Therapy, Developmental Therapy, and Speech Therapy that Ellie gets. She also gets Music Therapy and Hippotherapy (Therapeutic Horsemanship). And apparently these have been the Best Things in the Entire World for the little girl.

And the doctor says that Aquatic Therapy is great too; we should sign up for that.

Aquatic Therapy and Therapeutic Horsemanship are both at least 30 minutes away from home, without traffic.

Therapeutic Horsemanship and Music Therapy are expensive (and not covered by insurance or First Steps).

But they're so important for helping to build strength, promote balance, improve receptive language, encourage walking - how can you say no to that? Don't I want the best for my child? Don't I want her to become independent and self-sufficient?

I do. And so I'm torn, because, truthfully, it's a bit overwhelming. It's a bit much. It could easily become my full time job plus, my whole identity. It could easily lead to an over-scheduled child who has too little down time at home.

Or so I tell myself as I don't make the calls. Maybe we can do Music and Horses monthly instead of weekly. Maybe we can just go to the pool instead of having Aquatic Therapy. Maybe my kid needs time to be a kid.

The Invisible Woman

There are several different types of sexist guys. Yeah, yeah, there are sexist women too. Lots of them. And that sucks. But the root problem with sexism isn't a lack of sisterhood. After all, it's still the men who are running the show, even if some of us are helping them out.

There's the old letch, not uncommonly found pinching your ass in nursing home hallways.

There's the Old Boys Club, commonly found eating steak or playing golf places you can't visit.

There's the porn-loving fella often found in the bedroom trying to convince his girlfriend of why she should enjoy letting him film "the money shot" while he calls her a nasty slut.

There's Larry The Cable Guy.

There are the chivalrous gentlemen who always buy lunch and open doors for the ladies and are quick to point out that women really are the better sex.

There are the Promise Keepers and other conservative religious folk, talking a great game about nuclear families and men taking responsibility for themselves and their actions, all the while underscoring the biological necessity of men and women having different natures and different roles.

There are the liberal men who don't see why it's wrong to call other men "pussies" as an insult.

And there are the men who don't see women, don't hear us. This is an interesting group. Sometimes they're the guys who don't hear a good idea or a funny joke when you share it, but praise the idea or laugh at the joke when another man says it, as if he'd never heard it before. And some guys take it even further than that.

When I first met my husband's best friend from high school, I was a little nervous. I was serious about my then-boyfriend and I wanted this friend of his, this guy who had been so important to him as a kid, to like me. I took some care with my hair and makeup, thought of witty things to say, questions to ask.

He didn't even notice me. I expected him to smile, shake my hand, ask me how I was enjoying my first trip out to Wyoming, but his eyes slid past me as he looked around the room. He only talked to Paul. Eventually I wandered away. I checked the mirror for any errant pieces of spinach or other flaws that might have caused him to be too embarrassed to look at me, but there was nothing untoward. Every time I've met him it's been pretty much the same deal. And it's not a jealousy thing - "he's just a guy's guy." Like that makes it OK.

Several years ago I played in a men's inline hockey league. Somehow I ended up captain of my team for a while - though I was far from the best player, I was competent with the administration of the team and I wasn't the worst player either. I was energetic, enthusiastic, and dependable. But I got a really bad vibe from one of the guys. He didn't ever really acknowledge me. He talked around me, over me, asked other players for confirmation after I'd said something to him. Most of the guys liked him, they didn't see this because he wasn't ignoring them. It made me feel incredibly small.

Recently I found his blog. Hey, I thought, I like this guy better in his blog than I did in real life. Maybe I was wrong about him, or maybe he changed. Then I read on.

• Strike One: because the "guys" will do a far better job than that chick at HP did, of course
  
• Strike Two: what, no mention of the justice who actually wrote the dissenting argument?

He's the same guy, all right. Another "guy's guy."

Your favorite types?

Whine and Brag

Three of us here at Ellie's house are all laid low with strep throat. Ellie is handling it far better than Paul and I, which is a wonder considering that she's probably been suffering the longest. Today I decided to teach her the word and sign for "pain" so that if this happens again she can tell us that she's hurting. I thought she just had a rotten cold until my throat somehow became filled with razor blades. Only Lizzi the pug remains unaffected.

On a lighter note:

Don't ask me. Ask her.

And, even sick, Ellie is amazing. She was looking at the pictures on the digital camera today and she came to this shot of herself (please excuse the fact that nothing she's wearing matches. We're sick, OK?):

She grinned, touched her head, and said, "My hat!" Amazing.

Stacked Deck

I wanted to let that last post stand on its own for a little while before adding that I understand that I am part of the problem.

On a Down syndrome discussion board that I occasionally read, one mother was recounting her toddler's experience being tested by his future school district to determine his special education needs. He was mildly to moderately delayed in most areas, including gross motor, fine motor, speech, and cognition. But he was slightly ahead of developmental norms socially. No one was surprised by this. Kids with Down syndrome are often very social.

But that's not how we as a society measure success. We think of academic success, athletic success (Special Olympics doesn't "really" count), and professional success (money money money!). I buy into that. When I described all these "successful" people with Down syndrome, I talked about how well they've done in school, what they do professionally (for money!) and their athletic accomplishments. I'm sure that there are thousands of happy adults with Down syndrome who feel "successful" and who are beloved within their own communities, even if they never achieve material success the way we tend to define it in this culture.

Blogoversary and Role Models

Yesterday was my first blogoversary. I have really been enjoying this new hobby of mine, and I want to let you all know that I appreciate you coming by to listen to me ramble! Yeah, But Houdini Didn't Have These Hips has had over 12,500 hits in the past year, amazingly enough, and only a few of you were really looking for "Pimp My Ride." Thanks much.

In honor of the anniversary, I've compiled links to some truly amazing people with Down syndrome. As time and interest allows, please consider taking a peek at these extraordinary folks and what they've accomplished.

Role Models: Oh, my daughter, look what you can do. Down syndrome successes:

1. Karen Gaffney attended regular classes at school (B average). She has an associate's degree and is a certified teacher's aide. She is a professional motivational speaker and travels across the country speaking to students, professionals, and self-advocates. She swam across the English Channel on a relay team. She is an amazing woman.
   
   
2. Pablo Pienda "is the first person with Down Syndrome to obtain an university degree in Spain. His success was accompanied with constant struggle against prejudice. Not quite satisfied with such an achievement, he is currently studying educational psychology."
   This guy is eloquent: First I do not consider that Down Syndrome is a disease. For me it is a personal characteristic. I am fine and healthy. We must not be treated as sick. There are other prejudices and you could write a book about them. There are reactions like pity, the misconception that we are not intelligent, and a long list of social and moral incorrect misinterpretations. Fortunately, we are overcoming some misconceptions. I am just doing my part and demonstrating that I am as competent as anyone.
   
   
3. Aya Iwamoto is a Japanese woman with a bachelor's degree in English Literature. She is also fluent in French and has her librarian's license. Her parents hid her "handicap," even from her, until she was in college; then they began speaking publicly about her successes. Now she is an accomplished public speaker and has traveled all over the world talking about Down syndrome.
   
   
4. Sujeet Desai graduated from high school with a 4.3 GPA and was a member of the national honor society. He went on to study at Berkshire Hills Music Academy and completed a two-year residential post-secondary program in Music and Human Services. Sujeet is a professional musician (6 instruments!) and self-advocate. He lives in an apartment with roommates and is engaged to be married.
   
   
5. Emily is a teenaged artist whose paintings are for sale on eBay.
   
6. There are many, many more success stories, and every year the odds are better, as more kids with Down syndrome are growing up in homes with families who love them and get them the early intervention they need. Google for Jason Kingsley (the actor and writer, not the computer game designer), Mitchell Levitz (author, speaker, advocate), beautiful Mia Peterson (who lives independently and far from family), and of course famous actor Chris Burke.

A recurring theme seems to be that several of these accomplished individuals have found that their biggest hurdle is not their Down syndrome, but rather is others' prejudices. I have learned so much over the past couple of years, and I am still learning. I am so glad that these brave souls are blazing a trail for my daughter.

Well. . .

Maybe not every single minute of it. For instance, my beloved lass has been using the last three mornings while Daddy has been leaving early for jury duty to push at boundaries.

This morning, for example, has been full of joyful exuberance including filling a smelly diaper and not telling me she needed to go until afterwards (and then clapping for herself with pride). Very soon after, on the changing table, she decided that it would be a great time to wiggle away from me and stand right up, wiping herself on the wall, then peeing all over herself and everything else. And if you think the changing table is bad, you should see when I try to change her on the floor. Whew.

And I still have to wrestle both of us into clothes and somehow get Ellie into her DAFOs (Ellie's don't come up so high and are not pink) and TheraTogs (this is a new experiment that I am not loving) yet this morning, then off to school and work. I hope Paul's trial finishes up today!

Now she's trying to figure out all the wiring around the computer by pulling it out and wrapping it around her neck.

Mischief!

I left Ellie to play in her room while I finished lunch this afternoon, since she didn't seem inclined to nurse or go down for her nap just yet. After a few minutes I realized that I was hearing a suspicious amount of silence, so I went to check things out. Ellie wasn't in her room, the guest room, or my room. Wait. Did I remember to close the door to the master bathroom? I don't believe I did. But it's closed now!

Ellie quietly scuttled across the hall to my room, went into the bathroom, and closed the door behind herself. When I found her, she was standing at the bathtub playing with my soap, but she'd clearly already spent some time placing her tub toys in her potty chair.

Of course, she had recently filled the chair with a truly impressive quantity of poo and I'd lazily decided that thorough rinsing was clean enough and I'd get the seat with an antibacterial wipe this evening - after all, it's not like anyone touches the inside of the bowl, right?

That'll learn me. Lots of Dial on the hands and into the sudsy kitchen sink with the tub toys. Then more following Ellie around while my little monkey attempts to climb everything that will stand still long enough, from furniture to short stacks of books. I love this. Every minute of it.

Home Again, Home Again Jiggedy Jog

We got home last Sunday after spending 5 days in Boston. It was a nice trip and we had a good time, but it was exhausting and I'm glad to be home. The flight out was uneventful, though the flight back was a bit more stressful, and buying Ellie her own seat was a very very good decision. In the plane and later in the cab from the airport to the hotel and back she sat like a big girl in her own seat with a lap belt. She loved it. We rented a stroller for getting around Boston, which was another wonderful plan. It was a bit of a pain getting up and down stairs for the "T" but the "handicapped accessible" stations were probably worse with the most amazingly strong urine stench I've ever encountered in the elevators. It was hot hot hot while we were there, and it was a business trip for me so I was "on" for about 7 hours a day, far more than I'm used to.

My mom came along to enjoy the city, spend time with Ellie, keep Paul company while I was working, and watch Ellie in the evenings so that Paul and I could go out together.

Now, that was a treat! I can't remember the last time I saw a movie in the theater. That's not true. I saw Fahrenheit 9-11 last summer, with Ellie in tow, and it was not a good experience. That was the day we learned that our little darling, who was perfect during all 3-1/2 hours of The Lord of the Rings: The Return of the King short months before, was suddenly too old (and too young) for movie-going.

Paul and I went out on our own twice, once to see Star Wars Episode 3: Revenge of the Sith and once to see a play in the theater district. We saw Christopher Durang and Debra Monk in Laughing Wild. That was . . . an interesting show. I'm told that it is a laugh-out-loud comedy, but I thought it was about as depressing a show as I've ever seen. The acting was fabulous, though the second act left me frustrated and annoyed. A dream sequence. Oh, great.

The only minor stressors on the trip were the occasional breaks in civility caused by four such different personality types traveling together:

1. Oldest child with high control needs who values alone time very highly, seasoned with exhaustion.
   
2. Youngest child determined to lead the way in an unfamiliar city
   
3. Youngest child with difficulty expressing desires until frustration has built to a snapping point
   
4. Toddler, though perfectly lovable, still a typical toddler

and toss them together in a small hotel suite for nearly a week, sharing a bathroom and sleeping too little. It's a miracle we all survived! I'll let you guess which personality type belongs to each of us.

Overall, the trip was a wonderful break from reality. Ellie was absolutely angelic most of the time, enduring meal after meal out, in addition to long walks in the heat and visits to science center, MIT, USS Consitution, the Boston Aquarium, the Boston Children's Museum, and so on. We ordered The Big Dig at the Cactus Club, and Ellie discovered that little is more fun than dipping a chip into a plate of gooey goodness. She was too short to really see what was in the dish, so each dip was a blind experiment. She loved it.

Still, like the rest of us, she is thrilled to be home. She grinned when I buckled her into her car seat at the airport, and chattered excitedly all the way home (about what, I can only imagine).

It's looking like my September business trip to Hawaii is likely to fall through, and I'm beginning to think that this is a good thing. For one thing, it would be my 3rd such trip in 4 years, and that's counting the year I was at home with Ellie. But mainly, I think that an 8 hour flight with a toddler sounds unbearably stressful (Moreena, I have no idea how you did it) and we can't leave Ellie with either set of grandparents for a week during the school year. That seals it. It seems likely that this "once in a lifetime opportunity!" will present itself again at some point. Possibly after the grandparents have retired.

Down Syndrome Help

An online friend recently asked me about resources for a co-worker who's the parent of a baby newly diagnosed with Down syndrome. I thought it might be helpful for me to copy my response here, in case anyone else ever has need of it:

My heart goes out to your friend. I know what I felt in her position and I wouldn't wish it upon my worst enemy.

That said, some people get very angry with sympathy. Some people seem to immediately accept their child's Down syndrome and don't want to hear "I am so sorry," from anyone.

When looking for helpful reference books, I'd recommend looking only at recent publications. Older things (1980's and before) are often incorrect, offensive, and as depressing as hell.

Anything published by Woodbine House is probably a great bet, especially this book: Babies with Down Syndrome.

That said, I haven't read much. I find it easiest (still!) to love and accept my daughter as she is without trying to embrace the whole diagnosis at once. Your co-worker may feel differently or want to read up on everything she can get her hands on.

Good Websites:
DownSyn
Uno Mas

Local resources:
Karen Gaffney Foundation
National Down Syndrome Society (search for local support groups or clinics)
In St. Louis and Chicago, the local Down syndrome associations have volunteers who call or meet with new parents. Your area might have that too; it wouldn't hurt to call and ask.

Treatment: The baby should have a good pediatrician who knows what to look for, which charts to measure the baby on, etc. And it's not too early to contact First Steps to start seeing a physical therapist. (Every state will have a different web page for First Steps.) It took me about 8 weeks to make the call, and I knew about the Down syndrome before Ellie was born. In the meantime, I did exercises with her myself and that was wonderfully helpful. I knew what to do because my mom gave me a great book by Valentine Dmitriev called Early Education for Children with Down syndrome (0890798605).

In my opinion, the most important thing you can do is to be as supportive as possible. If she needs to throw herself into work and not think about the baby while she's there in order to cope, that's OK. Otherwise, showing as much interest in the baby - without focusing on the Down syndrome - and wanting to hold him, etc. is great. Some people pull away when this happens because they don't know what to say. Others pretend that the baby doesn't exist, or they're scared of him. All that hurts.

If your co-worker would like to talk, please send me her phone number and I'll give her a call.

Happiness

If you ask parents what we want for our children, many of us would answer, "that they grow up to be healthy and happy," without hesitation.

But when we say that, the words are laden with hidden meaning. When I say that I want my daughter to grow up to be happy, I have certain suppositions about what it means to be happy. Most of us do.

When I think of happiness, it's all tied in somehow with a partner, a family, a secure home, financial stability, education, friends, professional success, and leisure for relaxation. I can't imagine being truly happy without these things.

Every day, parents have to face their children making different choices than we would choose for them. A mother's heart breaks to see her child deciding to drop out of college to pursue other interests, thinking, "She'll never go back! She'll never get her degree!" My own mother looked at my cousin the Accomplished Doctor - nearing 40 and single, experiencing inexplicable health problems, working too hard, still wanting marriage and children - and was glad that I didn't choose that path.

Happiness is not always where we expect to find it. But sometimes when we say that we want happiness for our children, we secretly mean that we want for them that which would make us happy.

It's not pretty, but it's true.

Decency Laws

First of all, Hooray for the Bill of Rights! Rah rah rah for the First Amendment! Moving right along.

Discussion of decency laws and censorship issues is usually framed as a critique of inattentive parents who don't control what their children are doing/watching/listening to.

That's hogwash.

I mean, I'm sure that's part of it. But it's nowhere near the whole story. For example, yesterday I was getting gas. The two young guys in the car next to me had their windows rolled down and doors open wide. They were blasting their music so loudly that I could feel it through the soles of my orthopedic sandals. Over and over and over again I got to hear "Suck my dick, Bitch" until the woman parked behind them - with two toddler seats in her car - asked them to turn down their music. Snickering, they complied. But they didn't have to. Toddlers are great little mimics. I bet her kids - and mine! - learned something new that afternoon.

Seriously, If someone wouldn't stop screaming, "Suck my dick, Bitch!" at me, I'd have some legal recourse. But when it's music? Nope. Not even when it's extremely loud at the gas station. Not even if I could hear it from a neighbor's apartment or yard, unless they were breaking noise code regulations. But you don't have to be illegally loud to be harassing.

Another big thing is what it means for us as a culture that hundreds of thousands (millions?) of us choose to listen to this stuff. I don't deny the appeal of the music, I like it myself. But the lyrics and videos? Chilling. I can tell you how it made me feel to be enjoying my sunny June afternoon and then suddenly to hear "Suck my dick, Bitch!" from right next to me. It wasn't a very good feeling. I admit that I didn't seriously consider asking them to turn off the music. As soon as I heard that, I felt invisible. I felt like they wouldn't respect anything I said anyway. I wasn't a person. I was a bitch. I was there to be ordered to do sexual favors.

How can we ever talk about "equality" in a society where women are raped, beaten, and killed by men every minute of every day while we listen to music celebrating violence against women and objectification of women? How can little girls grow up to be "equal" when this is what they've learned growing up? How can little boys grow up to be men who treat women with respect?

So. That's what I'm thinking about today. Have a nice weekend!

My Ass is Kicked

I notice that I'm not the only one blogging sporadically lately. Maybe it's the summer heat?

Once again, stuck without a good workout DVD, I slacked off on my basement elliptical routine. I decided that I needed more motivation, so I signed up for an weekly hour-long class called "Hot Mamas in Training." Today was the first class. Oh, boy. First, the weather. It was 86 degrees in the shade - plus humidity! - at 9:15 am.

Second, the company. There were about a dozen Hot Mamas there, plus a couple of leaders. There was one other mama with a slightly flabby ass. She was also the only other one in a t-shirt, though hers was cute and fitted and she wore it well, while mine is a size 2XL plain white tent, just the way I like it. All the other Hot Mamas, who well-deserve that title, wore cute little workout tanks. They also had larger loads. Many women had double strollers. One woman had a double stroller plus a newborn in a Bjorn on her chest.

Third was the workout itself. There are two levels of Hot Mamas in Training, and I chose the lower level (Level I). The routine is a "brisk walk" for 5 minutes (I had to jog to keep up) followed by a "break" to do jumping jacks, push ups, resistance work, etc. After two jog/jumping jacks cycles, I thought I was going to die. I was already lagging behind a little. "OK, Ladies, let's do some stretches then get this class started!" the leader said with enthusiasm. I nearly fell over.

At one point, the leader of the Level II class ("much harder!" they assured us) dropped back to check on me. "So, how did you hear about Hot Mamas in Training?" she asked. Pant pant. After 30 minutes of this fun, my feet burning like someone had inserted red-hot coals under my skin (damn planter fasciitis), shortly after successfully completing 25 push-ups with my hands and knees in dog urine and goose poop, I veered off for the parking lot. Done.

I have until next week to decide if I want a refund or to continue subjecting myself to this humiliation. I think I will probably choose continuing the humiliation. I will be a case study for the other women: "Do Not Let Yourselves Go!"

Validation!

A friend and I recently started a little writer's group. I had a great time at our first meeting and am looking forward to continuing it, both for the company and for feedback, but especially for her wonderful know-how about writing professionally and submitting pieces to publishers. (I know, that's a little funny coming from someone who works in publishing.)

On the other hand, I have no idea what she'll get out of it other than the motivation to write before meetings. I'll leave her anonymous in case she prefers it that way, but I want to let her know that I had a great time and want to do it again!

Tonight I went to the writer's group at the local branch of the county library for the second time. Before I went for the first time, I expected it to be a bunch of young readers. You know the type: book lovers who desperately want to be writers but just aren't. Kind of like me. I was all set to feel critical of their work. Wow. First of all, the 8-12 people in the group are amazing writers. Second, they're all published. Very very published. Third, with one exception, they're all over 50. Some are way over 50. Fourth, they're mostly men. There's one older woman, then a younger woman who's in her late 40's, then me.

I read a short story tonight, for the first time. Before I read it aloud, I had no idea how much sex was in there. Gulp. I mean, it's not explicit or gratuitous, let alone titillating, but it is sex and I was reading to a bunch of father-aged men. I had never read any of my writing aloud before.

They liked it. They laughed aloud. They praised the form, the imagery, the style, the symbolism. "This is a very accomplished piece," the leader said. These are people I don't know, whose opinions I value because I admire their writing.

"Does it need . . . ?" I ask.

"Send it off," they said. "See what comments you get back and then decide if you want to add to it. It's ready to go."

I am walking on air. Maybe I can write after all.