Saturday, November 29, 2008

Lull

The lull in posts indicates the complete lack of lull in life. It's been nonstop the last month or so. I cannot pull a cohesive theme from these silent weeks to give an accurate account. It's just been rather random.

I think random and busy must be my happy place, though. I am grateful for that.

So I'll go with random.

Cate was in her third community theater production. She has been in the Wizard of Oz, Jesus Christ Superstar and Big, the musical. The rehearsals and peripherals of being on a community stage have reeked havoc on schedules, sleep and emotional steadiness, but she would not have it any other way. The next few shows have no children's parts and though I am looking forward to the break, I know there will be a huge gap for my little performer. We are still seeking out temporary outlets for her verve until she can get back up there again next year for Annie...

The marathon is complete for our hero Michael, but that doesn't mean his feet are up. He still running, orchestrating the most amazing dinners for us, working, playing guitar for his little groupie Addie, indulging Cate's detailed briefs of every moment of her life and picking up my considerable slack. All while demonstrating to the 3 very manic women that he lives with, that wild and opposing winds all need a common, quiet steady force at their initiation to maintain strength.

For me, I mostly keep busy as one woman pit crew for the ones I adore - 80% observation, anticipation, preparation, 20% frantic action. There are the distractions from this: advocating for ones I'm not related to, writing, consulting a bit, being a friend, sister, etc. Then we have holidays which seem to be mothers' work (yes - comment on this - the comment must evoke something from you) upon us. I did not cook for Thanksgiving, though. As a vegetarian of 25+ years - I was quite young at the start, yes, thank you - nobody wants me responsible for bird-roasting.

While I love the early winter holidays (late winter holidays being Valentine's, St. Patty's, my anniversary and birthday), each year they seem more and more daunting. Some of it may have to do with the lack of simplicity when you go more than 3 deep with those in the "helping" professions on the gift list. Cate has a school teacher and a Sunday school teacher. Easy. Addie has teacher, assistant teacher, spec ed teacher, 3 aides, PT, OT, SLP, adaptive swim teachers, respite volunteer... so many that make such a huge difference in her life. I'd like to space out Christmas so I can really do justice to each. You think I could initiate something where Christmas is broken up into 4 or 6 smaller chunks and spread out evenly over the year? But I know it's partly my fault. I have this hang up that the gift must be simple, but meaningful, be indicative of how Addie is impacted by their presence in her life. If I could just go get a dozen gift certificates for the coffee shop and call it a day, it would be much easier. I admit my problem with poignant gift-giving. I am envious of anyone who can purchase an apple shaped ornament or stuff a mug full of Hershey's Kisses and be free.

And then there is our Addie. She's tall enough to choose her own silverware from the drawer now. Never thought I'd see that day. She's been so absolutely squirmy with happiness lately. She loved Thanksgiving at my sister's house - all her favorites: people who adore her, a cat, lots of room to move around, and plenty of mirrors at her height. We also finally got a lot of extended family members in her communication device. She is addicted to her photo pages. We got their names, pictures and a few comments about each in there. Even the family pets. I'm afraid it's going to be a bit of a distraction when she gets back to school on Monday! But at least she'll get to tell everyone there about how Aunt Kathy likes to buy lots of pricey shoes.

Addie has a way, after she's done something she finds exhilarating or peaceful or fun, of swinging around to those she thinks are responsible, even hours later, to say thank you in her own way. She will just make this running dive for you, if you are lucky enough to deserve the credit, and squint her beautiful eyes so tight there's almost nothing left but two tiny crescent moons, you'll see her top teeth, which she almost never shows, and she'll grab you and hold on as though she'll fall off a cliff otherwise. She'll hold as long as she wants, sort of shaking throughout, laughing, snickering or humming. Suddenly she lets go and moves on without a look back as though it never happened. You are left with this pristine imprint that you have not so much heard as you have felt. The message is: Thank you. I LOVED it. Once you get one of these you are instantly hooked - greedy for more.

Of late, she's been doing it quite a bit.

So I hope you'll understand and forgive the present lack in posts.

Friday, October 24, 2008

Listen

Addie says "Listen to me." Addie's mom says listen to these kids, take 3 minutes and 25 seconds to watch it a first time to get over anything that might need getting over, if applicable. For me, this was getting past the emotion of seeing so much living proof in 3 minutes of our conviction that as a teenager, an adult, Addie will continue to be the confident, powerful, joyful, contributing member of many communities that she is now. For my 9 year old, she needed to ask me a question after the first viewing. Because the majority of the young adult AAC users in the video use wheelchairs did that mean that Addie would too by that age. No, hon, everybody's different, even when we tend to group by similarities. Once you process your own stuff on first viewing, watch again and listen.

Since I first saw this a few hours ago I have watched it 9 or 10 times. I hear something new every time.

AAC users have something to tell you. Addie has something to tell you.

Listen.

Friday, October 10, 2008

And Grandma's Mantel Shall Be Graced

I know, I owe a regaling of Marathon Day. You'll find it here soon.

In the meantime, an update of another tale: the school picture saga. I type again, as I did one year ago, with cheeks stiff from tears. And I should not be typing at all because it's nearly 70 degrees out, royal blue sky, brilliant warm sunshine... But it's sort of feels like that inside, too.

Without further ado, here it is (ado will follow, not to worry):




No need for a flotation device this year. Someone might like to tie a rope around my ankle however, and give me a yank or two back down to the planet. Or, could you give me a minute to linger?

I have a habit of commenting that certain pictures are worth a thousand words... and then I go and lay down a thousand more. But if you're reading this, it's likely you're fully aware of that and have your feet up, your coffee cup steaming and full.

This is Addie's smile for me, for her dad, for Cate, for Mrs. Bautista, for Trisha and a few others. Or so I thought. It is the one she hauls out when she feels confident, comfortable, believed in, loved. Truly, it's not for everyone.

I already knew that her aides and her classroom teacher sort of collaborated on picture day. They'd mentioned there was a step stool the kids were to sit on that she wasn't having any of. They sort of shrugged when they told me, as if to say "who knows what kind of picture we'll end up with." There was also hopeful mention of picture retake day. Expectations were not high. I don't think I really had any, in fact.

But on picture day, apparently her team did Addie the great respect of trying, reworking and trying something else. This smile is the smile that someone gets when they aren't deterred by her willful opposition to things. It's the smile one gets when one gives Addie a say and then responds with unwavering faith in her. The smile says "I'm right where I belong and so are you."

So Grandma, clear off the knick knacks and get dusting. There's a hinged double 5x7 frame coming your way, stocked with 2 gorgeous girls. When you look at this frame on your mantel, you'll smell graphite and tempera paints, you'll hear lockers opening and closing, you'll feel the click of a ring binder. And the photos will speak to you in unison - one in a rapid high voice, the other in a synthesized computer-generated voice, "We are contributing members of our own communities called school. Just like you were."

Wednesday, October 1, 2008

sunday Sunday SUNDAY (echo, echo, echo)



The Lakefront Marathon is Sunday, Sunday, Sunday! Just a few days until my husband, my friend, my love, brings it all to the finish line. We were dumbfounded by his strength and perseverance last year when he ran it for the first time (pictured here just beyond the finish line upon seeing his firstborn in tears of pride for his accomplishment), but this year my girls and I have even more reason to shake our heads in amazement at this quiet, steady force that is their dad and my husband.

Michael heard about firstgiving after running last year. This vehicle for fundraising was reason enough to get him to toss on a bib again this year, though he had other reasons of his own. Without much ado, he set up his page to support the Special Friends Foundation - an organization that supports Rubinstein-Taybi Syndrome research, as well as individual families that need assistance with the impact of RTS.

He humbly asked me if I thought a goal of $2,500 was too lofty. We liked the number because we got Addie's diagnosis when she was 2.5 years old - sounded good to me. But once he flipped the switch on his page, within about 48 hours, we got smacked in the face with a stunning reality.

The reality was that our friends and family, friends and family of others affected by RTS and people we don't even know... had apparently just been waiting to be asked.

The immediate and generous response had little movies snapping in my head. Movies of index fingers I know, index fingers I don't know tapping us on the shoulder, firmly holding out bills to us with hearts drawn on them. Among those with cash in hand, there were those without anything in their hands. Those people had hearts drawn on their palms, which framed their mouths as they hollared to all who could hear "Look! Look what's happening here, be a part! Get involved if you can!" In these movies, I'd look at the hearts on the cash, on the hands, confused, awe-struck and then follow the hand, the arm up to the faces. The smile on these known and unknown faces cleared the fog, cancelled the confusion and allowed us to humbly take these hearts, these bills in both hands and put them in the box marked Special Friends. Oh, yes. People are good. They love Michael or they love Addie, or they love someone else with RTS, or they love someone with any struggle. Or they just plain love.

I'm talking about you. You know who you are. We love you, too.

Michael's training has been tapering down now and he is feeling good. He's ready. I think this week that feels like waiting is a little tough on him. All the weather watching and the short runs leave too much thinking time. But he feels ready. It's a heavy load this year, taking all of you with him, all of the families affected by RTS across the finish line. If there's one thing I know without it doubt, it's that he's got the strength to do it.

So far, Michael has raised 4 times his original goal (the site will be active until December). Impossible without you all handing over your hearts, without Tom and the William Starck Jones Foundation's $4,000 match that will be posted on the site soon. The impact this can have on families, on Addie's friends, cannot be counted, cannot be measured. Saying thank you doesn't seem enough.

Think of Addie's number 1 hero Sunday morning. Think of his feet hitting the pavement, of his steady heartbeat, of the sweat he wipes away. Because you will be with him.

Tuesday, September 23, 2008

Taking Another Swing at Grandma's Mantel

Today is picture day. You'll feel the full weight of that statement after reading how picture day went last year:
Grandma's Mantel

Today is different. I was not there. I don't know whether a mantel-worthy photo was achieved or not.

But to my own surprise, it is of little concern to me. Grandma can put a print out of an email I got yesterday from Addie's kindergarten teacher on her mantel. The email tells me, Addie's mom, how excited the teacher is that Addie will soon be using her new communication device at school. It goes on to say how well Addie is taking to the classroom routines and listening/following instructions. Her teacher says she really enjoys having her in class and that her loving demeanor is an asset. And would I like to come and introduce Addie's new device to her classmates on Monday. This did not come from a special ed teacher or one of Addie's aides. It came from the energetic K4 classroom teacher responsible for the first school experience of about 40 kids (morning and afternoon class) of all abilities each year. (I had already been hearing things from the special ed staff that little by little have unscrunched my shoulders, unfurrowed my brows, curled up the corners of my pie hole and deep-fried my heart.)

Mrs. K's email is a picture itself. It sharpens the edges of the hunch that's been coming in to focus day by day since Sept 2nd after a summer of fretting about whether we'd made the right decisions about school. The final image - Addie is in a place where she is respected, where there are high expectations of her, where she is heard, where her dignity will be as cared for as well as the rest of her, where her differences can be celebrated, where she will grow and help others grow. It's hard to find places like that for my girl. And to know she'll be spending this entire year with people who see her power, strength, beauty nearly as clearly as we do. Well. That picture snapped today by the photographer could be the most off center thing, one eye closed, only the bottom teeth showing, finger lodged in a nostril.... It'll be in my wallet, on my mantel, set as wallpaper, without a doubt.

Despite, or because of, last year's unfortunate outcome on picture day, it was a unanimous family decision to put Addie in the exact same lovely dress as last year.

Friday, September 19, 2008

Back to School... a bit after the fact


A family photo of the 4 of us walking Cate to the first day of 4th grade. Pretty typical - Dad, Cate and Addie enjoying the moment... me behind trying to freeze and store their enjoyment, casting a shadow in the process.



Addie happily saying hello to a teacher and goodbye to dad.



My tiny big girl, learning the ways of her new world as a grade schooler.



Look who is in orchestra this year! Cate, apparently, plays the viola. That was news to me until the moment I was called upon to procure said instrument. I have seen her unpack it, hold it, clean it, repack it... but her virtuosity is evidently, still in store for us.



All in all, they are both pretty jazzed about school. Happy new year!

Wednesday, September 3, 2008

One Story, Five Pictures


Vacation was absolutely exhilarating, but I let too much time go by before posting about it. The relaxed and hopeful lexicon I'd have used to relay stories has been trodden a bit by back to school preparations and, to be frank, freak outs. But those confessions are for another day.

So I will tell one story (of moderate length by my standards, I promise) and post pictures, hoping they give a taste of just what a complete pause our week up north is every year. There is no room in our Jetta for the four of us, stuff we need for a week, AND all our concerns. Something's gotta be left behind. Amazingly, we pick worries and obsessions to lob off deck as we motor towards the one week a year where time doesn't exist.

The Story
Cate remembers heading to Door County every summer of her life. There are certain things she needs to do there in order to make it the holiday it was the year before. I guess that's what they call tradition. Miniature golf is high on her list at the age of 9, as are go-karts. I was not a particularly adventurous kid outside of book choice and trying out new vocabulary on my siblings, so go-karts and bumper cars always meant the same thing to me - shabby little cars made with no standards that spark as we crash in to each other - in short, something I'm not getting in to. But as a mother, I now understand that bumper cars and go-karts are completely different vehicles and therefore experiences. Alas, I still didn't care to set bun in either one.

But Cate and her dad had to do it one day on vacation after Addie tolerated mini-golf quite well. Addie and I decided to wait outside the chain link fence so we could get a better view (IE, pictures) as Michael and Cate zoomed by in their 2-seater go-kart. Addie was excited enough to watch, but when she honed in and recognized Dad and sister in a car, she seemed to get a little anxious. It actually looked quite like I imagine my face must look as I witness people I love having fun...with reckless abandon. Yeah! You're loving it and I love you, so the look on your face is always my goal, but ugh, you could totally croak doing that... but I guess I should keep that thought on the down low and celebrate your joy... Sort of a pulled in at the corners smile, weakly accentuated by eyebrows raised unnaturally high.

After the ride, Cate skipped up to us asking if she could now be the passenger while I drove the kart. Uh. No. The silent no - no, that goes too fast, the seat belts don't really seem all that secure, I can actually envision taking a corner too sharp and ejecting you, my sweet thing, and I don't know how we'd paste all your skin back on. The verbalized no - "No, not today. It made Addie really nervous to see you both go by so fast. Let's do something we all like now."

I should have foreseen the moment when Cate and I were tooling around upper Door County by ourselves, about to pass the go-karts. But I did not. We'd been to the bead shop and I'd assumed that she'd want to go back to the cottage and create the loudest, largest, most ostentatious wearable baubles we could, as is also tradition. But the karts speak louder than venetian glass beads at her tender age, so the following conversation ensued, back seat to front seat, in a pleading tone on both sides:

Mom, the go-karts are coming up. You said you didn't want to do it with Addie watching, but she's back at the cottage with Dad. So?
Awe, honey, we've been gone a bit, don't you want to get back?
No, why?
Uh, well. I mean. What about the beads we just bought, want to do something with those?
We can do that any time. C'mon mom, please. It is so fun.
Ok, I'll be honest. Go-karts scare me a little bit and I've never been on one.
What???
Really, I've never done it and I'm nervous and scared. You and dad went really fast. I trust Dad's driving more than my own.

(About 4 second of silence, then Cate resumes in a very resolved, confident tone.)
Ok, mom. You let all your nervous feelings out right now to me. Say anything you want. Then we'll get in the kart and all you have to do is believe in yourself.

I turned on my left blinker and pulled into Johnson's Park. Within 6 minutes I was driving a go-kart and having the time of my life. My own mother probably would have had to look away.

The Pictures



Friday, August 15, 2008

She's a handful...


...of fingers to show her age. Addie is 5 today. And she can already answer the "how old are you" question with her chubby little digits held up.

It's been a remarkable 5 years - some of which felt like 20 years during the rare worrisome times, but most of which feels like 10 minutes during the prevailing joyous times. We could not be more proud of our little fighter, thinker, charmer, schemer, swimmer, smiler, walker, signer, joker, rocker, lover, encourager, believer.

We celebrated with double chocolate muffins for breakfast (she was dazzled at first, but ultimately a little nonplussed by the exclusion of frosting) and then, of course, a few hours of swimming. Tonight we will all enjoy her favorite food: dad's homemade seasoned beans and rice. She'll blow out candles for the 2nd time today, hear the traditional song for about the 30th time today and then let loose on a cookies and cream cake. She'll open a few presents and then head to the bath/bed routine.

Vacation tomorrow! We'll post some stories and pictures when we return.


Cheers to you my girl, my hero. Today and every day is yours for the taking.
Love,
Mom

Thursday, August 14, 2008

Make a Careful Choice This Weekend

video
Here a few links of explanation. If you click them, please read the last 2 in particular, which are responses to an editorial and to the movie itself respectively.

Petition

National Post Editorial

Response to National Post

IA Town Crier

The last 2 opinions were penned by parents of children with Rubinstein-Taybi Syndrome.

Please leave tickets to this movie unsold.

Sunday, August 3, 2008

Gauntlet Retrieved

Addie swam today. That sentence sounds very blase and old news until the verb is carefully considered. She swam. She's played in the water, of course. She's walked in it, peed in it, ran in it, drank it, experimented with it's power. Sure thing. Everyday she does these things, without a doubt. Often I get the feeling that her life depends upon it, at least her joy of life, anyway. But today is the very first day she swam in it. And to this mom, it feels like her sweet darlin' just got the first taste of her own limitless power, you know - like first steps.

I have mentioned all too often her affinity for the viscous classical element. Though I have to say her appreciation for the other 3 have not gone unnoticed by her family - she loves to roam the earth, picking up sticks, enjoying gravel and dirt, following the haphazard pilgrimage of a tiny brown ant with her riveted gaze. And she becomes surprisingly vocal when it's windy, humming and working so hard to get the sounds out that she seems to believe the wind commands. Fire for her is a mesmerizing minute or two, but then becomes a challenge - when you blow out fire, in her experience, cake comes next.

From day 1, or perhaps before, water has been her love, her peace, her obsession, her thrown down gauntlet, just like any true love. 'Perhaps before' I say because it has been noted that a number of pregnancies that resulted in a beautiful child with Rubinstein-Taybi Syndrome also involved excessive amniotic fluid. Though this was not documented in my own pregnancy with Addie, part of me suspects that she either enjoyed excess and became a bit dependent or awaited birth through scant supply and is now making up for it. Truly, though. From her inaugural bath, we could easily tell we had a water baby on our hands.

We did the mommy and me water time when she was a baby. She's had swim lessons, both adaptive (for special needs) and regular private lessons. But our goal was to keep her where she was most happy, to be able to watch her smile and squeal and play so hard she didn't even know she was wearing herself out until it was too late, eyes clamped for the count, sleeping heap smelling of chlorine. During the school year we have her in a swim skills class mainly for safety; the girl believes that water will never, ever fail her. Which is both motivating for her and terrifying for us.

I've posted pictures and video from the pool where we spend many of our summer leisure hours. It is zero-depth, which to me is a confusing label for a pool that is constructed like a gentle lake beach - it gets gradually deeper with no drop offs. Addie has a spot that she marked off as hers at this pool. She has gotten bolder and bolder with each visit, which can sometimes be 4 or 5 times per week. We stay from about 10:30am to 1:30pm, with adult swim, snack and lunch breaks mixed in.

I imagine it's because of a lifetime of therapy, but perhaps it's for other reasons this lady might choose not to think about so as not to have to consider whether her own level of protectiveness is questionable, but Addie prefers not to have me interact with her in the water much. She'll accept short bouts of play and affection from me, but she has the air of someone with something they need to do in the water and barely tolerates my interruptions. Honestly, I feel somewhat patronized when I deign to simplify her relationship with water down to tossing a ball or splashing or singing "Pop goes the Weasel." She mostly plays/works independently under my watchful, ready to jump eye, thinly disguised as a relaxed, infinitely interested eye.

Recently she broadened her territory and had begun this sort of diving motion. She throws her upper body forward towards the deeper part of the pool and kicks as though she thinks she might fly. Sometimes her arms stay forward, sometimes they snap back behind, faithful that the aerodynamic position will have some purchase in the water. Her face goes under. She comes up, blinks and tries again. This has been stopping all thought, conversation, breath, blinking from me for a few weeks. Nobody showed her how to do this, she has never taken class in a zero-depth pool, this was of her own invention and it was clear she would stand by the method. I watch silent and still, praying, bargaining - if such a thing would work for anyone, make it work for Addie. If it doesn't work, help her think of another way. Anything, just don't let a moment's doubt befall her. Whatever happens, let this invention of her own, and not of an instructor's, be of value to Addie. Let it be a window for her into her own limitlessness.

And today was Sunday, an odd day for us to be at the pool. We had our nieces with us for the night and had some time before my sister and her husband would come get them. It's a luxury for me to have my husband at the pool, another person for Cate to negotiate snacks and play with, another person to be vigilant over Addie. And then we had my teen aged niece and her kindergarten sister with her for more eyes, more entertainment. I happily found myself redundant so I thought I'd find a lounge chair, relax and just peek when necessary.

But as I was still formulating my plans to veg, on my watch, Addie did something that had me shaking my floppy head, eyes bouncing, tongue wagging, stars coming out my ears like in cartoons - I hope you're hearing the indescribable sound effect now. I did not believe what I saw. I was still and silent again until I saw it a second time, breathing only enough to prevent a distracting death scene. Then I called my husband over, not explaining much, and needed him to validate what I saw. He did.

Addie threw herself forward, kicked and scooped with her hands. Her body was not completely horizontal and her face was under the water. But she moved from A to B, with no part of her strong, now controlled body touching the bottom of the pool. It didn't last long and she was up and blinking quickly. But by the third time, I was not going to let it go unwitnessed. I grabbed her and kissed her. All I could think to say was "You swam!" We talk about swimming every day, it has just meant going to the pool in the past. But I think she got the gravity of my short statement. She tried, she tried, she tried. Her trying went from week to week. I don't doubt she thought of revisions before she fell asleep at night. And today she did it. She reached her goal. She got no help from anyone, no one told her what her goal should be, she set it herself. She got the idea, she formed a plan, she practiced, she persevered, she failed, she revised, she tried more, she succeeded.

She knows what she has done today. All evening she's had that same tired, deliriously content look my husband had in October last year after he became a marathon finisher. She is not unaware of the personal pay-off of her dedication.

I talk sometimes about when I feel the differences between my special needs child; my non-verbal, physically and cognitively different child and typical children, the realization of the two, often separate, worlds. Today I felt a difference. The difference today is that before she was even 5 years old, my girl picked a goal, worked tirelessly at it for months and achieved it. Correct me if I'm wrong, but isn't that rather mature?

Naa, don't correct me. We're on top of the world right now, and we don't give a *&%@ which world it is.
video

Tuesday, July 29, 2008

Something for Everyone


While all the other zoo-goers raced to feed the goats in the petting farm, Addie seized upon the endless open gravel pit just outside. It was by far, the best part of the zoo for her.

Wednesday, July 9, 2008

Keep Tally: Be it Now Known that I Do

It's all about being fair, or trying to be, as a parent of more than one child. You count out the M&M's, you covertly use the length of your thumb knuckle to tip for measuring the width of cake you cut for each of them, you semi-consciously eye the amount of toothpaste on each brush... It doesn't feel critical to make things even all the time, you don't always have to hear the slow, indignant "Heeey! That's not FAAAAIR!" But a habit forms and becomes the default mode, ingrained.

I did not realize I was doing it, but apparently this is how I have tried to treat summer activities - one for one. Mind you, Cate is an extremely gregarious 9 year old, smiling, talking, emoting most waking hours. And Addie is loving, non-verbal almost 5 year old with a very strong personal agenda regarding freedom and movement. Every summer camp in the world is expecting a child like Cate. None are expecting Addie and few can do more than merely accommodate her (tolerance does not equal inclusion).

So maternal-types just have to get crafty. Cate has her activities and Addie has a few structured and a few made up ones. We go to the pool at the same times each time we go, hoping we'll see the same kids and that this will lead Addie to be comfortable enough to interact a bit with some. This routine has inspired a feeling of ownership in Addie, but has not really fostered interaction. Because she believes she is the boss of the pool (really a tiny water park) and all surrounding waters and including the sand pit, she moves through the pool trusting that all 'her guests' will get out of her way and bear with her splashes. Sometimes they do, sometimes they don't. Either way, it's not so much of a warm introduction. Still working on this and her awareness of others. It's the water she's come to be with, not so much the people anyway.

But in addition to activities, there are the summer extras. The invitations from friends and family to sleepovers, to festivals in other suburbs, to baseball games, to cook outs, to the zoo, to ride bike, to get ice cream, etc. Sure, we do these things as a family, sometimes asking others to join. But to be invited outside your own family is another thing altogether, much more exciting. Over these spontaneous surprises, I have no control. 100% of such invites are targeted at Cate, leaving Addie with 0%. As a result, Addie spends a substantial amount of time in her push chair or in her car seat, completing the entire round trip without getting out, for no other purpose than delivering or retrieving her sister to/from something thrilling.

It has always been like this, but I must have chalked it up to the age difference in the past, still seeing Addie as a baby myself in some ways. But she will be 5 in a matter of weeks, certainly not a baby, not even a toddler, but a school aged kid, with a little thing called Rubinstein-Taybi Syndrome thrown in the bucket along with everything else that makes her Addie. Cate was on her second summer of her own invitations and events by Addie's age.

So I find myself wrongly holding those that extend welcome to Cate and not to Addie in contempt. Not Cate's classmates and neighborhood friends because those truly belong to her exclusively, but more family friends and family itself, people whose relationship to Addie is the same as theirs to Cate, whether bound by blood or not.

I say wrongly because I understand it to an extent: Cate is older, she is more rewarding to be around - she'll tell you in no uncertain terms when she's having a blast and when she's blasted out. Cate has no health concerns, there is no confusion about what level of communication she can cognitively deal with. Cate doesn't run away in public places, she doesn't wear a diaper or dig in said diaper, she is aware of her own coordination and balance and so does not require vigilance when she moves about and climbs. Cate doesn't have pica, so there is no need to scrutinize what is in her hands at all times or watch her mouth for chewing motions when she has not been given any food. And she just so happens, according to her mother, to be a brilliant, beautiful, witty, kind and confident young lady. So I see why folks want to celebrate summer with her. And they do not see inviting Cate with no mention of Addie as exclusion at all. It's just a specifically addressed invitation, after all. I get that.

And yet maybe I thought these were offered with the intention of spreading the cheer with Addie the next time. Next time hasn't come in 5 years yet. I'm now willing to see that where I've turned a blind eye in the past.

Addie, like Cate, happens to be brilliant, beautiful, witty, kind and confident - to those that know her well, anyway: Mom, Dad, Cate and Mrs. Bautista. I am certainly not saying that others don't love Addie. They clearly do. But there is a difference between loving someone passively and loving them actively through high expectations and leaps of faith. There are also a few people paid to be in her life or people who see their time with her as charitable work, that see her beauty and potential. For obvious reasons I do not refer to these service oriented, obliged people in this rant. I also see graciously accepting requests to babysit my children, or even generously offering it out of the blue, as falling outside of this realm, though I am eternally grateful for these gifts. But they are gifts to me and my husband, not to Addie. I'm talking about the old "We're gonna do something fun and we just KNOW it will be even more fun with you there," kind of affirming proofs of genuine fondness. Things that go right to your 'I-know-my-value-meter' and boost it up a few units.

The gap is no bigger than it's ever been, it's just the looking at it straight on that becomes a call to action. What is the action? Part of it is teaching Addie how to demonstrate her independence and power, but more of it is teaching others how to see these things in Addie, how to relish them for their originality. Here's hoping 10 years in marketing will be of some assistance in this.

Just as there is a counter at the top of this page, I will need to tally Addie's "hits" going forward and adjust my PR and marketing efforts accordingly through analysis and education. Cate will continue her own successful campaign for herself and hopefully Addie and I will learn a thing or two from this apparent social champion.

Monday, June 16, 2008

Rite of Passage

When Cate, my firstborn, lost her first tooth it was a big event. The build up was grand. There was fear, joy, tears, laughs. We knew it was loose for so long - she skipped between dread of pain and elated anticipation of, well, cash under her pillow. She was 6 years old. When it finally came out, we were all wrapped up in the holiday that peaked with the 6 quarters under her pillow in the morning. Cate's celebration continued on Monday when she could finally get her name on the 1st grade graph of missing teeth. I even remember that it was December 8th because we'd placed bets on it.

Yesterday, Father's Day, my second born lost her first tooth. Without any ado at all. This is one of those times when the magnitude of difference is completely in focus for me.

Addie is not yet 5 years old and has a diagnosis of Rubinstein-Taybi Syndrome.

On par with those with RTS, Addie has a particularly small mouth, chin and jaw. We'd noticed that her beautiful little chicklet bottom teeth were becoming a bit crowded. But she is not one to let you have a good look or feel in there - she's got some serious mandible strength. You learn to get glimpses when you can.

Just before surgery at the end of May they asked if she had any loose teeth. We sort of chuckled, not that we know of, smug that at her age and size, of course not -all that excitement was yet to come for her. That was 2 weeks ago.

Cate and I had some top secret Father's Day errands to run (yes, last minute, too) yesterday. We came home to find my husband, Michael, and Addie - just up from her nap - enjoying the beautiful weather in our back yard. Michael nonchalantly mouthed to me something about Addie's tooth. I didn't quite get it. When I got closer he said that tooth we'd noticed had changed position was gone. Sure enough, I grabbed her little mug and wrenched her lower lip down. Before she shook me free, I saw the space where that little kernel of rice used to be.

Michael said he looked everywhere, but could not find the tooth. He did not know what I knew - that finding an RTS lost tooth was a rare feat indeed, as many are lost during sleep and swallowed. My mentors on the RTS list serve had regaled many a tale of disappearing teeth - some venturing to scout them out in diapers later, some researching how easily such things are processed in the human digestive system and letting it go at that. We are part of that later camp.

After taking in that little space in Addie's smile, I was stunned. But my natural reaction to all things 'child' took over. I got the camera and took over 70 pictures over the next 2 hours, in search of the most elemental documentation of this great (?) thing that happened.

Once I finally got the photo that told the story (my side of the story, that is - the one that says a milestone was hit. Though Addie looks happy in the picture, it has everything to do with being the bath and nothing to do with the missing tooth), I was free to think about what happened. Addie, my baby, lost her first tooth. And she was 100% completely unaware of it. I wouldn't be begged and bothered to find the tooth fairy pillow. She would not ask me to read the book again about what happens when you loose a tooth. She would not question what the tooth fairy wants with all those old teeth. She would not dream of how to spend her quarters. She would not ask me to take her to the local mom and pop "we sell everything" store, Winkies, as the quarters burn a hole in her pocket.

Michael remarked that it sort of forces you to get a grip on her age and that the differences between other kids her age will become more and more apparent.

Just as I was mulling all this over, deciding how to feel about it, my older daughter tripped over her own words, eager to lay out the plan for us. She would write a note to the tooth fairy. She would explain that the note was under Cate's pillow because Addie has pica and would probably devour the note before the fairy could read it. In the note she would also request that the quarters be left under Cate's pillow for the same reasons, but that Cate promises to get them directly to Addie in the morning. There would be a post script on the note after the thank you. It would read "Tooth Fairy. You know how I haven't lost a tooth in a really long time? Could you help me to lose one? Love, Cate."

Cate knows about Santa, she knows about the Easter Bunny and so I assume she must know about the Tooth Fairy, though we did not have a talk specifically about her, as we did for the others. But she probably also knew that I needed some help with my own faith at that moment, so she did what she does so often - filled in my gap.

The note was written, deposited under pillow and exchanged for 6 shiny quarters. Cate showed the windfall to Addie when she woke up. Addie pushed it away in favor of a cup of water to drink and play in. Cate set the quarters on the table and told me to put it in Addie's yellow bank, not her red and white one, because there is more room in the yellow one.

Like my own mother, who I thought was a lunatic for doing it, I have saved all the teeth collected. There is a little bag with Cate's name on it in a secret place. I added a bag with Addie's name on it and yesterday's date, but leaving it empty didn't feel right. I rummaged through my jewelery making materials and found a tiny clear crystal bead. I will put one in the bag for each of Addie's lost teeth. One day I'll attach them to a delicate silver chain for a necklace - she and I will share it.

Monday, June 9, 2008

Long Road Home

Nearly 2 weeks after surgery, I am ready to say that Addie is on the mend. She took the long route, by way of pneumonia and collapsed lung. She is still pale and tires easily, but a short return visit to her home element did her wonders this weekend. She has arrived:
video

Tuesday, May 27, 2008

Chlorine Dreams

Rough few days. Within 40 minutes of each other, 2 anvils that I had been watching get closer finally landed with a thud on our little corner here. Addie's surgery is scheduled for the worst possible time tomorrow - 12:30pm. You know, no solid food after midnight, only clear liquids until 3 hours before surgery, nothing at all in that 3 hours before. That should make her a nice willing patient.

She was scheduled later because she is older. Yes, almost 5, so certainly older than the babies scheduled before her. The nurse offered the fact that it was done this way because babies cannot understand not being fed as well as older kids. I guess this is one of those rare situations where her diagnosis of Rubinstein-Taybi Syndrome and the accompanying cognitive differences are not on the table. Not even considered. Ironic - would love that, even strive for it in many situations, but not so much for surgical scheduling. So she will not be fed and we cannot begin to reason with her about it. And, like the younger kids going earlier, she cannot talk, so she will not be able to articulate just what jackasses her parents are for denying her food and then taking her to a place with white coats, sharp tools and so many dizzying grave agendas behind the hands poking, prodding, manipulating her. Not to mention the hurt she'll be taking home with her 24 hours (if we're lucky) later.

So I'm cursing the time of her surgery as I drive to the post office to mail back Addie's loaned communication device. We've had it for about 6 weeks or 2 months now. She's done wonderfully with it. This one was not ideal for her, but it's worlds better than nothing and she "owned" it. She showed a lot of doubters just how clever she is with that thing. But it was due back so I had to pack up her voice, her little electronic requests for a treat, for the chicken dance, her comments about how library books smell good, her "Look what I can do" button... and mail it off today. Duct tape is securely fastened beneath her nose again. Just in time for surgery.

I'd like to do an I Dream of Jeanie nod and blink her past all this, into the sunny outdoor pool where she seems to do nothing but count her blessings, 3-way private conversation going on between her mind, her body and the sweet clear water that holds her up.

Picture Addie in her beloved water tomorrow if you can. Rush her there in your thoughts.

Saturday, May 10, 2008

Leak in Composure

Addie's IEP (Individual Education Plan - annual documentation of current functional and academic performance, specific and measurable goals and supports, services and accommodations needed to execute the goals) was yesterday morning. This was a biggie as it is her transition to kindergarten one - new school, new teachers/therapists, new rules, new expectations. Loading it up a titch more, she's also learning to use a speech generation device for communication. It's a little chunk of technology where when Addie touches the desired picture symbol, the machine says the word or phrase for her. It sounds simple, but it's a complicated assessment that includes her motivation, ability to identify the pictures, communicate intentionally, navigate the screens, use the right aim and pressure to hit the correct "button"... etc. Then there is the programming question - deciding what vocabulary and phrases Addie might use to express not just wants and needs, but her observations and feelings. This ongoing investigation has consumed me since February.

So there has been a fair amount of planning and discussion prior to the IEP meeting. We are parents who prefer to see a draft of the Present Level of Performance and goals at least a week before the meeting. We ask for this, making it clear that our intention is to start the dialogue before we're at the table together. I like to anticipate the meeting itself as an hour and a half of nodding that we're on the same page, so it takes some pre-work to get close to this very optimistic daydream. With input from me, the teachers do the draft, I read it and comment, send it back, then I have a meeting with some of the team to refine things before the bigger meeting. It was a bit different this year as it was Addie's current school doing the draft and her new school needing to respond and give input at the meeting, so I knew there would be more hashing out to do. Fair enough.

When we all got to the table - about 12 people - it was mostly productive conversation, confirmation of understandings. Phrases like "let me see if I understand what you're saying... we see things differently here, so my thoughts are... have you considered....thanks for making that clearer..." could be picked out among the debate. Even with this respectful, goal-focused discussion, it is difficult for me not to discuss the "how" when talking about Addie's goals for 2 reasons: the how is the part that requires the most detail and will determine whether a goal is attainable or not, in my mind. This is a stain left on my thinking from years as a marketing analyst/application usability designer. Further, if I do not understand the methods, I cannot uphold and supplement them at home. This is the hallmark of my relationship to teachers and therapists - let's figure it out and execute in a way that makes both of our jobs more efficient - neither of us can do it without each other. So I put concerted effort into making a general statement about how I intend to do what I can to prepare for the school year over the summer, but that the teachers at the new school would need to provide me with ideas since the school and it's routines and standards are new to me, as well. I held in the "How are you gonna accomplish that??" on each goal discussed. I recognized my restraint and a trickle of pride in it kept me smiling and genuine.

There were certainly opposing perspectives in the room, differences that required give and take. It was a comfortable conversation - in my mind, a nice vignette of grown ups talking to grown ups about ensuring the best for this child as she becomes a big girl. Our belief that Addie can and will contribute to the junior kindergarten classroom and school at large communities was considered a primary ingredient in each goal.

Then. In an exchange between 2 of Addie's current therapists that lasted less than 10 words, the brakes screeched and halted this good will momentum. The question had been asked about whether the kids sit on chairs or on a rug for circle time in the classroom. On the rug. I was suggesting that maybe Addie needs to have an assigned spot with her picture on it, so that consistency facilitates her following this routine until she can own it herself. The physical therapist added a side comment to the speech therapist that it might be best if Addie sat... in a Bumbo. Do you know what that is? It's a seat designed for 3-6 month old babies before they can sit up. It has a sort of pummel between the legs to keep the baby from sliding out. I have heard that the company is coming out with a larger one that might suit the needs of bigger kids with sitting or trunk control issues, but I'm not sure they were aware of this. And Addie does not have any physical issues with sitting.

My eyes glazed over. I heard the speech therapist start to say "yeah..." and my head turned inside out. I very curtly interrupted and said "Bumbo. No. My kindergartner will not be sitting in a baby seat among her 4 and 5 year old peers. That will not happen." The half smile, measured cadence and acidic tone flavored these short phrases, wringing out all that diplomacy built up in the conversation until that point.

To draw more focus to my mini-outburst, there was nothing but silence afterward. I would not even be thinking of it now, had that gap been filled with even just one comment like "Oh, no. It would not be appropriate for Addie to sit in an infant chair at school." Nothing filled the gap.

I took a breath and slightly more calmly explained that we believe Addie is capable of staying in her seat over time with practice and support and I weakly offered some examples of support that few at the table seemed to be taking in.

Clearly I am still bothered by this. No one disagreed with the baby seat idea. What would the point of using this chair be beyond mild restraint? Yes, Addie does tend to try to leave situations often. But most of that has to do with the fact that she has no other way to express her disinterest or dislike in it. 4/5 year olds can roll their eyes at calendar time, tell the teacher they don't like it, whisper to a friend. Addie can give release to her opposition in no other way than attempting to leave at this point in time. But everyone in that room agreed that she is capable of learning rules and routines. A kindergarten rule is that you sit on the carpet certain times of the day. A baby chair with a pummel is the same as having someone hold her down by the shoulders - it takes away Addie's accountability to learn the rule. It tells her "we don't think you can figure this out on your own, so we will make you sit here."

Kindergarten is about social development and beginning to take responsibility for the official and unofficial rules of being a member of a community. Addie does not speak, has physical and cognitive differences. It's hard work for all junior kindergarten kids, but socially, her hill is a little bit steeper than most. So what happens when you add a baby seat to the mix? Many of these kids likely have infant siblings who use the very same seat at home. What conclusions about how to interact with Addie could be drawn in these fledgling minds and hearts, seeing her silent in a powder pink piece of baby gear?

I have no doubt the suggestion was not about any of the above and more about making sitting on the carpet something less complicated for the teacher to deal with. Which is certainly valid. And I understand how taking wandering out fo the picture could help Addie attend the carpet activity better. But I did not breathe before my mother-perspective of the damage this idea could do triggered my sharp reaction. And I compromised the message itself in doing so. If anyone but me remembers this scene from the meeting, they are not thinking about what a raw and unfinished suggestion it was, they are thinking about the "typical" self-righteous, bitter mother response to it. But I'm nearly certain the moment is completely gone for most people in the room, except my husband and I.

If I had it to do over again, I'd do it very differently. The good and the bad news is - I'll have chances to practice shaping my gut outrage into constructive advocacy every day left in my children's lives.

Tuesday, April 22, 2008

...ectomies on the calendar...

I can't catch up. I keep waiting for everything to pause so I can prioritize and elaborate (or belabor, as some may see it). No dice. It's not even as manageable as "one thing after another." It's all at once. A regular 40 ring circus with the potential for new start-up rings - mid-show without notice. Some rings are bland, some are uproariously amusing, some are morbid and sad, some are annoying, some are gut-wrenching, some are fun, some are infuriating.

I'll just pick one, then. Newest one. Addie will have a laryngoscopy, tonsillectomy and possible adenoidectomy on May 28th. I know - routine surgery. But it's her third major surgery and I now feel we've weathered enough of them to declare that it does not get any easier to consider.

The fact that she is having it because of severe obstructive sleep apnea leaves little room for mulling the should we/shouldn't we question, but that just frees us to consider all the other details.

She will stay overnight, something she has not had to do for previous surgeries. She will be in pain and she will not understand why we allow it. That's the old news. But at least there will be no casts this time, nothing but the hurt to keep her down afterwards.

We knew it was coming, but putting it on the calendar lops of that wild, secret hope I must have had that this would heal itself, that it would just go away on its own. Alright, reality. Lay it on. No such thing as ready, so have at it.

On the upside, I have a few handy words/phrases new to my lexicon as of today:
laryngomalacia
argon plasma cauterization
propophal
roxicet

What if I had nothing but a dictionary at my disposal? Shudder to think.

I know she'll be fine. Hopefully better than fine, if this takes care of the issues. It's just a hard thing to do, as many of you know too well, to give your child over to someone with a sharp instrument in their hands. To have to sign on the line where it says they can use that sharp instrument on your child. To take your hurting child home in your arms, fumbling with sheets of instructions and warnings about giving her pain meds, but not too much, warnings about how she'll dry up if you don't give her enough to drink, about how much of a fever is too much... all while she looks at you, groggy, glad you're holding her, but maybe confused about why you let this happen to her.

Lucky for us, she's the most forgiving person we've ever encountered.

Tuesday, March 11, 2008

Shift

The tectonic plates of planet family shifted slightly in a new, but inevitable direction. I won't say I was waiting for it, or necessarily expecting it. But now that it's begun, I see no other way.

My 8.5 year old, Cate and I saw the Lion King Broadway production with a few other families from her Brownie troop. Though I know she wondered if she was too old for anything referencing the Lion King beforehand, the fact that her back never touched any part of the chair, that her lower jaw never met her upper and that she didn't tell me she had to go to the bathroom even once cleared it up for both of us that she most certainly was not too old, too young, too anything for this production. I'm pretty sure she thinks that they must have had her in mind when developing each costuming detail, every prop, every lyric, every note.

The only empty seats in the theatre were those cordoned off in preparation for the parts of the show meant to draw us in by being performed off the stage. It ended a bit after 9pm which is late for homebodies like us. Everyone walked out in a festive mood anyway. Like all the parents in the throng leaving their seats, as a grown up, I grew down a teense while watching this spectacle. Targeted at the wallet of my own demographic, but at the sensibilities of a dem south of my own, the show embedded its melodies in my suddenly youthful mind and I started to hum. I know it was not Hakuna Matata, because that would be just too, too. Something I can't recall. Everyone was humming with the only exception being those little enough to be carried through half asleep.

So I'm humming and then I start to sing. Not loudly, just mainly to myself and with just enough volume for Cate to hear. Maybe it was my way of telling her I liked it and thanks for taking me. Cate generally jumps on any train of silliness I engineer - as irregularly scheduled as such mom trains can be. But not this night. I wasn't to sing.

She turned slightly to me and cocked her head to soften the message, to demonstrate sympathy underneath the headline. She pulled back her semi smile at either end, another kindly gesture, and in a voice barely audible, a voice designed to guide with patience, she says "Mom." In the space I thought she'd fill with her own rendition of the song, she said "Mom."

My knees bent to maintain balance while the plate creaked, broke and shifted . Ah, it had to eventually. Well, I was a rare and lucky case to have had 8.5 years of being another person's main point of reference on everything, but it felt sudden, nonetheless. Yesterday she would have taken my singing in public as her cue to link arms and sing even louder and more off key herself. Today. Today she deemed it inappropriate.

Other theater experiences with her through the years snap in my mind. If we were a bit early for a show and already in our seats, she would start talking to the people behind us. Kneel up on the seat and just pick up talking as though the people behind us had been waiting for her to arrive so they could get answers to their burning questions, with no need to even ask them. No need for them to respond either, for she had an ad lib monologue to deliver. What she had to say was often very like the following:
Hi. This is my mom and I am Cate. My parents named me Catriona, but I'm called Cate. I am 4 (5, 6...)
My mom wanted to see this play because she read the book, but I didn't.
My mom's favorite color is orange.
She is not Chinese, but she can speak some Chinese words. We are actually Irish.
My mom knows how to make jewelery.
Sometimes you can't believe my mom because she always tries to fool people like in a joke.
She is a vegetarian but she does not know how to cook very much.
My mom has short hair because she likes it. She says we should be proud of our faces and keep them high and open to the air.
One time my mom's brother....
Today my mom told me.....
My mom has these shoes....

It was great while it lasted, being what a bright little human thought was the most interesting person in the world...to anyone and everyone. It's hard to go from that right to having to be taught by an 8 year old what public behavior is acceptable and what isn't. But she's a good, gentle, encouraging teacher who offers enduring knowledge as a gift. Though it pains me to slip out of such a grace as limitless interest, her burgeoning understanding that all things do not radiate from mother equals the dawning of her realization that she is free to stake her own claim, create her own path, become her own center. And that's what I wanted, isn't it?

The plates will shift back and forth. We'll spend time farther apart, but we'll crash into each other in another place. She is separate from me. That is a truth that I will have to get used to as she increasingly feels the need to prove it.

I miss our oneness already. But my pride in this new beautiful individual also leaves me open to another kind of pride in myself eventually. For 8 years I've felt overall OK that I was succeeding in raising a dependant, despite occasional dips into despair over my mistakes. But now Cate has thrown down the gauntlet - mothering an independent. Her faith in me that I can rise to it really leaves me with no other option but to rise.

Sweet teacher.

Friday, February 8, 2008

Still the Same



An old photo of Addie. This was just before she turned 2, about 6 months prior to the revelation that became her diagnosis of RTS. My subconscious keeps this photo at the ready and shoots it up to the surface an average of once per day. I often check myself and wonder if my vision for and of Addie are altered because of her diagnosis. Do I expect more or less? Do I appreciate her more or less? Do I attribute more contentment to her or less? Do I love her more fiercely or just the same as before? At this point, we've known about RTS almost as long as the time we lived without knowing.

I can't answer those questions. I can just look back at old photos and remember the day I took them. Like this one. It was a day in a string of warm days that convinced you that summer was creeping up. The grass was green enough and long enough to have it's first trim. It was warm so I pulled out the frilly, crisp, pink, purple and white summer clothes for the girls.

Addie loved laying in the grass - I'm sure she still does, though our fresh foot of snow outside has made her all but forget about the beloved green fringe. I remember Cate not really feeling comfortable with grass blades tickling the skin on her legs, so she'd sit on her bum with her legs in the air. But Addie loves the feel. She'd lay down and squirm, making little grass angels if it was long enough.

I remember leaning over her this day. I was trying to get a photo of her sitting on the front lawn, just-planted hydrangeas and impatiens behind her. I tried to capture my jump on the season - look, flowers planted, kids in their spring duds, I am one together mom. But she would not sit up. She just wanted to roll in the new green carpet just installed. Fine, her call. I got closer and closer. Her chunky triangular legs shifted and rolled all over, and you can see just how that made her feel.

I note that her nose has an orange tinge to it - sweet potatoes were a favorite, as they still are. Her eyes then are the same as they are now - undeniably crescent shaped, the contrast of dark pupils make the blue look like cool liquid. I also see a little sliver of grass on her chin. I probably would not notice it, if it weren't for her severe pica - she eats anything found in nature (grass, sand, sticks, rocks) and many things a bit removed from nature (paper, book bindings, cotton balls, toilet paper...) She probably munched a few blades that day, when I didn't know to be vigilant about such things.

But she's still the same Addie. She's not smiling here because of the camera. She's smiling because "smiling's my favorite" to quote Buddy the Elf. Smiling is her default mode, just as it's always been.

She's still the same Addie, I'm still the same me.

Friday, February 1, 2008

Assistive Technology Awareness

Erika has Rubinstein-Taybi Syndrome and does not speak. Her sister and the rest of her family want to ensure she is heard nonetheless.

McKenna's vision

For more information about augmentative and alternative communication, visit ISAAC.

Sunday, January 20, 2008

Recycle, Reuse ok, but Reduce?

I just cannot reduce when it comes to words. It's a vice, I know, but there are many worse. And it's not even part of my addiction that all my words be received, just that I arrange them and put them out. That seems to satisfy the monster within.

I have been asked to recycle a few batches. Put them out again, if you will. Here is an answer to one such request. Awe, man. Rerun!

There is an online community of families around the world affected by Rubinstein-Taybi Syndrome, just as there is for other things that bring people together. This list serve is a place for Q&A, to exchange experiences, to ask for and offer support. It's also a goldmine of truth, tears and information. Just like any family is, I guess.

One witty, experienced, sage mother posted about a particular milestone that her son with RTS had reached at the age of 18. That milestone was the classic "consider bringing along tools to cover up a rule infraction while breaking said rule" milestone in all the child development books. OK, so it's not there. But not much of the truly amazing things our kids do/learn/accomplish is in those books. Our kids have varying degrees of delays, but all have cognitive differences. So this was big. This mother caught him in the act, but could not tamp down her pride at the planning and prescience he demonstrated by bringing a broom along with him sweep away the evidence. She told this story in a tone a fulfilled mother takes when telling that her baby is now a toddler, that this child just said this amazing thing, that that child of mine just made supreme court, that this other one is going to state for Academic Decathalon...you know, that sheer, simple "can't see before or after this and don't want to" mother-pride.

It made me think of my own experience with that feeling recently. I had wanted to scream this victory from my front porch, but thought it took a particular kind of audience to appreciate it. And it does - an audience that can handle poopy talk and an audience that embraces accomplishment of a different kind. Here is what I shared with my Rubinstein-Taybi Syndrome list/serve family, some of whom have suggested I also share it here (you'll appreciate the lack of accompanying photos):

Addie poops in the bath. I'm not asking if anyone else's child does this, I'm just trusting that it happens and we don't really talk about it. We were just excited about things happening in the right room. OK, anyone who cannot handle where this is going, please hit delete now.

Anyway, the warm water, the joy of being in her element (I mean that literally), it all contributes to some very relaxed bowels. Which leads to some very anti-relaxed parents. Once you have a sighting, you've got to grab her out of the tub, dispose of the unwanted intruder(s), scrub and bleach the tub and all the toys in it, then put the little she-devil back in to re-cleanse and disinfect. You know. It's just not a joy. But she gets 2 baths from one, so I guess it's a joy for someone...

Her dad and I decided she could understand that this was not a good thing. So we started using consistent and vehement language: Addie, no. No poop in the tub, it goes in a diaper or better yet, in the toilet. And we would try to toss it in the toilet and get that propaganda done if we weren't too peeved. But we both always said the same thing and our 8 year old would parrot us when she was the discovery person. We thought being relentless about the message was a start. And we were right. And Addie had her own ideas of what a start is.

So very recently and a few times since, this scenario changed a bit. One day I'd just washed her hair and returned to the kitchen to do kitchen things - the bathroom is directly off of the kitchen and I can hear every muscle move, every breath from her while I'm in there. She likes to sort of twirl in the tub, she's on her back and uses her feet to propel her in a very rapid circle around the tub. Spinning, oh how she's addicted in every form. That sound is as familiar to me as the arch of her eyebrows. But suddenly it grew silent. Silence is never a good thing with her. I know you can relate. I stepped back in the bathroom.

She was looking at me - sort of unusual, there are so many things that trump me about a bath, that I feel more tolerated than noticed while I'm in with her. She stared. I asked why she wasn't doing her spin thing. Still the glare. Then she stood up. At which I freaked "No standing in the tub, that's dangerous!" But she continued. She looked down. But I was distracted by the thought of her falling. She took one hand off the edge of the tub and I felt like I could faint from premonition of a cracked open head. Finally, she pulled out the rare and huge guns for me. She pointed. This kid never points. She got my attention. She pointed down. To a pile of poop. Outside the tub on the bathroom floor.

She wanted me to know that she'd followed the rule we'd ranted at her. No poop in the tub. Well, there wasn't any. It was in a neat, gathered pile. Outside the tub. Just like I'd asked. I could not have been more jubilant. Truly, it was a big check mark in the W column. But it's a victory that's been hard to share, you know. So you'll indulge me for taking this opportunity, I hope.

Truth be told, it made me take stock of all the pat phrases I use with her, wondering if I could jack them up a bit to get more out of her clever little interpretations.

So I get you, Carla. Brag alerts aren't just about milestones in the book of how kids grow. They can happen anytime, anywhere, with a broom or a steaming pile of you know what... Here's hoping for surprise broomsticks and piles for all of us in 2008!

Tuesday, January 8, 2008

Surface Dwellers Have it So Sweet

While I did have a restful, playful, peaceful, happy-chaos filled holiday season, I find myself sighing in resignation not even 2 weeks into the new year. Is it me or is the list of wrong shrinking while the list of "yeah, this is OK for me to do" growing?

December's obligations were abundant with the holidays to prepare for and many decisions about Addie's schooling and medical care looming. I was on my way to a meeting where one of these decisions would be hashed out, when I backed into a car parked across from my driveway. I have no excuse. My mind was on the meeting and the probable changes in Addie's life that might come of it, and not on identifying potential obstacles behind me, as it usually is when I pull out. In short, I spaced.

Let me admit that I drive a cruddy car. It's a 2000 black Toyota Camry. I never liked the car, even when it was new. It always felt too old and serious for me. I felt very middle aged driving it, even way back in my mid-thirties (the distance from them grows every day...). I prefer a car with curves and a sense of humor. Black Camrys of that year just seem so self-important and dour to me. Adding to that image, we've since accumulated a variety of dents and parts that dangle, no longer able to serve their original function: broken mirrors, window controls, etc. By no means are either of our cars something we place much value on beyond their purpose as tools to get us from A to B (or in the case of our current schedule, from B back to A then crossing over to Q for a bit, only to rush to D while expected at M, cutting my losses, skipping M and circling back to A, while thinking that I should really be at R or S, and then rushing to Q again, wishing I were already at Z, but never quite getting there...).

So I did not tarry over the state of my own machine when I heard the crunch. I looked back at Addie, who if she even noted the abrupt stop, may have considered it a pleasant departure from usual for a brief second. Not even possible for anyone to be hurt, so no worries there. Then I wondered about the victim-car itself. Oh, what a relief - it was not our neighbor friends' car, it was not the vehicle of the young couple who just moved in across the street. It was the car always parked in front of or across from our house. A silver sort of station wagon SUVish thing. The woman works at a little storefront frame shop around the corner, yet always parks somewhere within our view. And though her car is a newer one than ours, it has been plenty banged up and dented since shortly after she got it. I know this because it spent the last 2 summers in my peripheral view while my kids had a lemonade sale out front, or ran through the sprinkler or created chalk masterpieces on the sidewalk. Big dents, little dents, pretty much evenly spaced all over the mini-SUV type car. It is there for every coming and going from our home between about 9am and about 6pm, Monday through Friday.

So I didn't worry to much about that either. I'm glad I hit a hoopdee with my hoopdee, if it had to be. Nevertheless, I knew what I needed to do and flew into the frame shop determined not to miss my meeting, but clear about my purpose. The woman was with customers, but was very relaxed about it. I interrupted as diplomatically as I could and told her that I hit her car, but did more damage to my own than to hers, that I hit a dent that was already there and made it a little deeper. We quickly exchanged contact info and she said she'd be in touch as she turned back to her customer. She was pretty unfazed by it and I thanked my lucky stars that I did not hit an angry person's car, that it was not someone who put their wheels at the top of the priority list, above civility. I rushed to my meeting and shed a thin slice of stress off by making a decision then and there. I thought it may have turned out a bit of a good day for me, all things considered. I waited to hear from the car owner.

This was December 8th. I heard from her today, exactly one month later. When she did not call right after the smack-up, my husband and I figured that she wasn't concerned about it since like us, she did not fix any of the dents already there. I won't say I'd forgotten about it, but I certainly had other things to think about in the last month. She called from the body shop today asking if I wanted to involve insurance or just pay for it. It? What is it? Well, it is having the entire door replaced, of course. I hit a dent already there at about 8 miles per hour, so of course the door must be replaced at a cost of $1500, as I would later find out. Shock made my voice sound meek as I mentioned that there was already damage before my right taillight bore the brunt of the collision. She delivered a carefully prepared explanation of how no, the existing damage was on the other side, everything on that door was from my tail light. I was to understand that I hit the single spot on her car that did not have a dent in it and compromised it so much that the entire door needed replacement.

I sent an IM to my husband asking what do I do when she calls back with the estimate. I don't argue that I caused some damage, and plan to act responsibly for the damage I caused. But buy her a new 8th of her car? What could I say? 'I remember more damage being there before I hit it?' That from one trashy car owner to another, I happen to know that there were already waves, nicks, bumps and divots of varied sizes all over that door? I think she's banking on memory falling outside of the realm of evidence. And waiting a month for this alleged memory to fade a bit more was a rather clever move, too.

While I'm messaging my husband about the situation and getting unjustly frustrated with him for restating what I already knew about my not having ruined the door, Addie wakes up from her nap upstairs. I run up to grab her because Cate is expected home any minute - this is the first day of a new schedule where a friend will drive her home on Tuesdays and Thursdays. I drop Addie on the couch and see the van in the driveway deliver Cate onto the walkway. I head towards the door to open it for her when there is a knock. I knew this would happen. It's the silver vanwagonsuv-driver with a stapled estimate in her hand and a grin on her face. Did I mention it was raining? And that the mailman showed up at precisely the moment I looked at the dollar amount on the estimate and gasped? Yes, well. I restated to my fellow lemon owner that there was a bit of concern that not all the damage was caused on December 8th. She recited her prepared statement and wanted me to come and look at her car, as if that would ease my mind about buying her a new door. Come gander at this car you've looked at 5 days per week for the past 2 or 3 years, in the rain, while the mailman is waiting (new guy - wanted to hand it to me for some reason), Addie is whining and has a smelly diaper and Cate is walking up the front stairs talking about a 3 third-graders play-date she has planned and that 'Jessie will call in 4 minutes about it'.

My head slipped off its perch and hung down from my listless neck. The last 3 minutes had accumulated in and weighed down my noggin so completely that my neck threw in the towel. All this stuff would need to be prioritized and hacked away at one by one. Now.

I gave my head a final heave up and testily grabbed the mail from the mailman. It was soaking wet, but I smiled a smile that I hope conveyed the message "Thanks, the mailbox is hanging there for you, only for you. No one else can use it. It's yours. Please be my honored guest tomorrow and every day after." I nudged Cate through the door, not acknowledging the grand trifecta play-date plan or the clock ticking on Jessie's call to seal the deal. I growled for Cate to keep Addie happy for a minute in spite of her fruitful and fragrant diaper.

Turning to the opportunist at my door, I explained that she could probably conclude it was not going to be possible for me to go admire the dents in her car individually at this particular moment, but that I'd talk to my husband and call her at the frame shop. I hated to do it, but I had to pull the "my husband" thing - the dreaded pretense that I dare not develop a stance on something without discussing it with my knight and rescuer. I was looking for an out that would serve at that moment and that one is particularly reliable when any automobile issues arise.

I mean, what can I say that hasn't been said? I'm not going to argue with her. She's got a smile on her face, calm is on her side. It is most certainly not on my side as I stand on the porch, dripping mail in hand, demands from the duchesses inside the house pulling me back through the door, not to mention the pending IM argument with my husband still in progress on my screen.

Her response was remarkable. I noted in the few seconds after I stopped talking, she remained completely unmoved - the smile was still there, her eyebrows high and arched to demonstrate respectful willingness and expectation at the same time. She did not take a step in any direction. She did not move an oral muscle as if to speak. It was as though I'd said nothing at all and she was still waiting for someone to answer the door. I said again that I'd be in contact with her at the frame shop. Still nothing. I realized she'd been nearly still the entire time. I ventured a goodbye and walked inside. I don't know how long she stood there. Maybe not long. Maybe she's still there.

Diaper next, then play date arrangements, then wrapping up the IM irritation with my knight and rescuer. In case you'd wondered in what order the rest of the demands were met.

But I am so very bothered. Not so much at being presumptuously handed a bill, nor the amount of the bill. Not even at rehashing the "accident" which is a really dramatic word for what happened last month. I am bothered that this woman I don't know decided it was ok and her due to deal dishonestly with me in order to get one thing fixed on her car. I'm not that much a Pollyanna - I realize people are made suckers every single day. And it's happened to me before. But it was her smiling, childlike way. She seemed to want me to be giving her credit for bucking up and being cheerful through this heartache I've caused her. And I wondered when she decided to translate my rush into her shop, the look of concern, regret and apology on my face complementing the spoken apology, my diligence in even telling her I tapped her car in the first place (I'm not certain she'd have noticed otherwise)...when did she decide that that was worth money to her? That she could and should trade honor for a new car door?

I wonder if she remained immobile on the porch because she had prepared no part of the play beyond handing me the bill. She was waiting for her line. Perhaps she expected me to go run get my checkbook and ask her who to make it out to? She had foreseen nothing beyond that so she was not able to respond to my improv. Maybe she was having second thoughts. I don't know.

I had to go back and wonder, in the same situation, would I do that? And the answer is maybe. If I never had to speak to or see the person I was doing it to. If I could order up a new door on line and blame someone I'd never have to meet and consider it chunk out of a corporate pocketbook rather than a personal one. That's not right either, but maybe I'd do it, if I somehow cared more about cars or money. But could I go knock on someone's door, see and hear her life bubbling in and out of the crack in that door, look into her eyes, hear her say 'I am responsible for only part of it' respond with insistence that she or her insurance will pay for all of my new door, see the confusion on her face, feel her doubt about my own morals and still ask the question - when will you give me this money? Absolutely not. And I am having a hard time processing that a regular joe that works around the corner would do that either. But apparently she would.

It must be bliss to live on the surface of things. No nasty conscience or respect for humankind to get in the way of anything. It must almost feel like having magical powers.