Thursday, May 28, 2009

Perspective: Much Like You

(Not a quick read - you need 10 minutes for my pre-blather and then the rest of the hour for the must-watch video to follow)

I was made aware of this video (link below) today at a meeting celebrating the accomplishments of the District Parent Liaison program I am a part of. The program is meant to provide education and resources to special education families while fostering positive collaboration between educators and parents to the benefit of special ed and regular ed children. We talked about the work we'd done in the past year, what we hope to accomplish in the next year. A back-patting, lasagna-eating, name-tag wearing afternoon. We squinted and smiled and felt good about our contributions for a few hours.

I came home and watched this video that a special ed director had reminded the group of 30 or so lasagna-eaters about. Many already knew of it, but I was hearing about it for the first time. All I knew was that it was written and performed by a high school theater group in our state - Appleton North - and that it was about awareness. I came home and watched, hoping I could find something to help Addie's sister in it, to put her at ease about Addie's future and her role in it, to help her trust others.

After seeing it, I realize we celebrated the wrong stuff, the wrong people today. We need to celebrate this taste of how articulate and aware kids are becoming about disability issues, celebrate those willing to step outside of comfort and the flow to make sure we don't forget about what is too easily forgotten. These kids who are the teachers, employers, rec department directors, doctors, grocery store owners, assistive technology engineers, legislators, neighbors of tomorrow wrote and performed this play to inspire us to act today, before they take the reins.

These young people SEE our kids, value our kids, expect things from our kids. Believe they are representative of change. Parents, have faith your newly diagnosed baby, your toddler, your preschooler with differences will grow up with the attitudes shown here, rather than the ones you fear. Believe it.

I have hope to spare after seeing this. I ask you to invest 45 minutes of your time to watch it and then pass it on in faith that our kids, my kid...together with these kids, have the power to transform.

I know, it's just a student-written, produced and performed high school play, no catchy tunes or Disney-owned stars. But these under-20's worked hard for over a year for something other than glory.

(approximately 45 minutes long)

Much Like You

Wednesday, May 27, 2009

Addie's School Just Doesn't Care

I have posted a note or two that the school has sent us about what a rock star Addie is. Let me post our most recent notes to the school. This went to Addie's principal, her special ed teacher and her classroom teacher:

The clinic at Cate's school called me to tell me my 4th grader wasn't feeling well so I went to get her just before picking Addie up. Truth be told, Cate probably could have stayed, but as we're all winding down for the year, I didn't feel a need to be a hard nose about sick-enough-to-go-home criteria.

Cate wanted to walk with me from the car to pick up Addie. As long as she didn't share any cooties with anyone, I was ok with that. And as Lynn could see - Addie was more than ok with it.

We followed our usual end of school day routine, picking a few dandelions to go, saying goodbye to friends. Various kids said goodbye to Addie, joked with her, had this or that to tell her.

As we made it back to the car, my unusually quiet 4th grader had this to say:

"Mom, wait. Do they know about RTS [Rubinstein-Taybi Syndrome]?"

"What do you mean, hon?"

"I mean, do they know that Addie has RTS? Do the kids and the teachers know?"

"Well, yes, they do know that Addie has a few differences."

"Hm." Brief silence. "But they just don't care?"

"No, hon, I guess they just don't care."

She hit the nail on the head. Addie has friends that know her, want to engage her, she has teachers who creatively empower her, have become experts at coaxing out the treasures inside her... just because she is Addie.

What a wonderful atmosphere of high expectations and inclusion - your school is a place where everyone is a full citizen, expected to contribute their talents and assets, while recognizing what others have to offer. I am so happy that Addie is a member.

Thanks for all you have done to make this year a beginning so much better than we dared imagine.

Terri, Michael, Cate and Addie

To which my husband more concisely followed up to them with:

What a wonderful testament to the community you've all created that Cate was genuinely unsure if anyone knew about Addie’s RTS because of how her peers and teachers treat her. She’s done so much and grown so terrifically this year that we’re looking forward to seeing what we all together can help her accomplish in the coming years. Thank you so much for sharing in the high expectations we have for our little lady.

It's true. They bloody well just don't care about anything except Addie's bubbly personality, her clever and strategic mind, her killer sense of humor, her friendly disposition and all the great things in her yet to be revealed.

Friday, May 22, 2009


Yes. I asked and this time it was not no, but rather yes. A quarter. We were allowed to go in to her purse with permission for the rare Certs breath mint and the even rarer dimes or quarters. So I shook the sand off and reached my 8 year old hand into the big brown endless labyrinth of pockets, flaps and zippers. Whatever you pulled out of her purse smelled that vague waxy floral Avon smell. Even the cinnamon mints. There was a drawer at home in the bathroom with the same smell. It was a decidedly grown up and female fragrance. At 41, mother of 2, I still wonder when that scent will find and claim me.

The quarter was cool in my hand. Even though she nodded in distraction when I asked, I still brought it to show her and get one last confirmation that it was mine. I could have it and I would not need to share. I knew enough to be subtle about the whole digging for it and the run by for final approval. If I'd made a show of it, everyone else might also ask. If it were discovered that she did not indeed have 10 quarters in there, enough for each of her children, my own secret shiny cash might have to be taken from me in the name of fairness. Fair is so incredibly unfair when you grow up in a family of 12. Fair didn't mean everybody gets some, it meant nobody gets any.

We knew, if you were gonna get something of your own, best to be quiet about it and take it while you can: eye contact, a quarter, second helpings, help with homework, a laugh, approval...whatever it was. Accept it quietly and move away while gripping it tightly. Because there might not be enough for everyone.

I held my cool quarter close as I crossed the beach, passing my sisters and our new friends we'd made during this year's stay at the resort. We came to Fence Lake for a a week or two each year along with other families of people who worked at the global company where my dad worked in the lab as a chemist.

My little brothers would be the problem. We generally stayed together on this holiday, the older ones wanting little to do with "the 3 little guys" as we were known. As I scurried away, James and John would want to know where I was going, what was in my hand. It was a gamble - mom might have 2 more quarters in there and if she did, she would surely give them to my comrades. But if she didn't? If she didn't, there is no doubt at least one of them would ensure everyone on the beach knew of the injustice he was being dealt. No, best to keep it quiet. Knowing that moodiness would repel them, I walked with my head down as though I was sulking about something. Though we were a pack, the 3 of us, they would have no interest in turning their focus from the beach to cheer a whiny, stubborn sister.

Once assured the boys would not impede my progress, I walked faster up the beach. I felt the sun on my shoulders, the skin tight and dry from swimming all day and sleeping in sandy sheets at night. We all loved these weeks. We had so much freedom in this little few acres of cottages, beaches and playgrounds. Trouble was defined differently. Rules were pared down to the bare essentials.

The one freedom I prized the most was the reason I needed the quarter. Up the beach, away from the cottages and picnic areas, there was a rec room cabin with pool tables, Foosball and other low tech, rainy day diversions. It stayed generally empty on sunny days. The bench out front of the cabin was something I avoided. A few years earlier, one of my sisters told us little guys the story of Lizzy Borden and her murderous ax while we sat on that green bench. I considered the bench itself haunted by Lizzy and her minced family thereafter and would not go near it.

But around the corner on the dark side of the building, the side that got little to no sun, was my destination. The tall white and aqua colored vending machine. This was not your average coke machine. It sold no coke, no Pepsi, no water, no sprite, no lemonade. You could get one thing and one thing only from this machine: Fresca.

We were allowed all manner of junk food growing up, but never soda. Or, I should say, soda was for parties an other very, very special occasions. When we did have it, it was my dad's homemade root beer. We were certain we loved it at the time, dad made it, after all. But I'm not sure it was particularly carbonated, when I think back. We wanted it to be the best and so it was. He died in 1978 and to this day, some of us regard the flavor of his root beer as unparalleled by any on the market. As though we'd be capable of judging such a thing.

On this day when I was 8, I rolled the quarter in my hand, warming it up for its fate of being traded in. I stood closer to the vending machine than necessary, but I loved its hum and the progression of sounds once I thumbed the cash into the slot: the slow and almost primitive sound of the quarter rolling down, hitting the rest of them in the reservoir, the silent pause and then the chunkclunkplunk of the Fresca being delivered.

My hand wrapped around the prize, I lifted it to the sun to admire. This machine was further exceptional because it sold bottles of soda, not cans. Fresca bottles were taller and narrower than most soft drink bottles. The glass clear with a pattern of little bumps all over. The liquid itself somewhat opaque, not clear like the run of the mill non-caffinated drinks - 7Up, Sprite. Something about the look of it suggested juice to me, though I'm sure there was nothing at all natural about it back then.

I grabbed the base of the bottle with both hands and cracked off the lid with the opener on the side of the vending machine. I sniffed the grapefruity mist wafting out the top.

Looking around me first, I moved to the back side of the cabin. Everything suggested this was not the side of the building meant for consumption - few windows, paint peeling, overlooking nothing but the border of the resort property and a bit of rough beach. No one would come to this side except the dog that lived on the grounds.

Rags was a long-haired red dog that walked the grounds freely. He wasn't the kind of dog you pet or played with. He just sort of guarded over the place. Rags passed by behind the building that day. He was the only one that knew and I knew he would keep it to himself.

I sat down in the sand at the line where it changed from light and dry to wet and packed. I played with the bottle a bit, digging a hole to use as a drink holder. The wet sand hugged the knobby glass. I scooched my knees up and hugged them, looking out with my eyes, but staring at my Fresca with every other part of me.

I was alone. No one was here, no one was likely to be here. I did not have to share this seat, this spot, this building, these minutes, these rays of sun, these grains of sand, these ounces of bubbly liquid escape. I did not have to take turns, or defend my claim, or relinquish it in the name of fairness. All mine.

I drank my Fresca slowly, forcing out burps after each small sip - burping being a bonus free gift with the purchase of contraband beverages.

I kept lifting the bottle to sip long after it was already gone. I realized I must rejoin if I were to keep this pleasure secret enough to do it once more before vacation drew to a close. To have someone come and find me would assure this was the last such private pleasure here.

Secrecy also compelled me to toss the bottle away (yes, in the garbage - recycling not so hot in the 70's) with great reluctance. Lingering, the bottle at the bottom of the bin with a few others gripped me a few seconds longer. I would have loved to have taken it all the way home, to keep a piece of what was mine today with me. But it would have become not mine anymore one way or another. Best not to put any bit of it where others can reach it, divide it, make it disappear.

The regret of losing the bottle wearing off, I skipped back along the beach, winding and stopping whenever the spirit moved me to check out a rock, dig a hole, kick at a wave. My brothers spotted me first. They glanced without moving, no doubt checking to see if the funk that seemed to have me sealed up earlier still contained their sister. Seeing that it had appearently freed me, they bustled to include me in that moment's endeavor - checking out a fat ugly muskie though the trap door in the anchored raft about 20 yards from shore.

We ran, then swam, out to the square wooden raft and climbed on to the wet outdoor carpet it was covered with. As we looked down, I felt something rising in me. I had a choice - turn my head and and give no clue to the secret inside me or let it out with gusto, answering or not answering the questions certain to follow.

Decsion quickly made, I bent my knees for torque, grabbed my secret-sheltering belly and heaved out the final bubble of Fresca-flavored air I had. It lasted a few seconds and had a volume that could not but get my brothers' attention and hold it. Afterwards, through watery eyes, my smirk let itself out as I waited for the accusations, the statements of injustice. The grapefruit aroma and verve could not be denied, after all.

But my brothers, ages 5 and 6, only paused. Then laughed. Then made congratulatory remarks about what a good one it was. Hm. Surely they knew. How sporting of them. Fleetingly, I wondered just how many one-shot quarter-grantings my mother had approved this year.

I am many years older now. Decades older. I have owned a lot of things, do own a lot of things. But nothing I have ever owned has been so unfettered, so low-maintenance, so absolute, so undisputed, so mine - as the clandestine aquisition and slow savoring of that luke-warm Fresca in the summer of '76.

Friday, May 15, 2009

Sistah Shines, Signs and Sings

I'm gonna watch you shine
I'm gonna watch you grow
I'm gonna paint a sign
So you'll always know
As long as 1 and 1 make 2
There could never be a sister
loves a sister more than I love you

Most of these words are by Paul Simon as found on the Wild Thornberries movie soundtrack. But as the song is actually about the love a father has for his daughter, Cate took a few liberties with the lyrics. The original is simple and sweet, a father singing to his daughter, first assuring her that she can count on dad, then moving on to assure her that more importantly, she can count on herself.

During our school day morning bustle today, I brusquely pushed open their bedroom door hearing music inside. Addie sat on Cate's bed, upturned face, watching riveted in rapt and motionless awe, fresh-from-sleep half smile on her lips, full smile in her eyes. In her jammies, Cate stood on the other end of her bed, singing along to this song, ratcheting up the volume during her lyric changes, ensuring her partner, her love, her only sister, understood the message meant for her.

As much as I wanted to step forward - insinuate myself into this sweet scene, stretch it out, engineer it, even break off a chunk for myself (which I realize I am doing by putting it here) - I silently stepped back and closed the door, leaving the sisters to themselves.

Wednesday, May 13, 2009

And Now, Back to the Program Already in Progress

After that brief interlude with lament, we return to the regularly scheduled program.

Addie consistently identified the colors yellow, orange, blue and purple at school this week. Again, we knew she knew these colors and more already, but it's a big processing job for her to separate a thing from something that describes a thing. After work at home and school, everyone's about ready to say she knows her colors. Knowing them was not the mountain, proving that she knows them was.

Scale the Color Id Mountain.

In even better news, Addie has another friend over right now. Interestingly, this is the first time she's had a girlfriend over. It's been all about boys up to this point. And we are having a blast. I am sitting here typing this only to restrain myself from getting in this poor sweet girl's grill for a bit. It's hard for me not to ask a million questions about what Madeline does for fun, what they worked on in P.E., if she likes Art class... A regular feast of responses. I have to resist gorging myself.

This darling Madaline is utterly delightful and is bringing back all manner of memories from my own Cate's 4th year. Everything is a remarkable cooincidence - wow! I have 2 friends named Ava. Hey! This doll looks like my doll! Cool! Addie has a little bed! Look, Addie's mom - she LOVES her sandwich! I love mine, too! You like to dance? I like to dance! Addie said grr! I can say grr!

Addie is still into the parallel play, especially in her domain, but every once in a while she shimmies up to Madeline to giggle in her ear or to bear hug her. Madeline giggles back or hugs back every time.

But my favorite thing about this in-progress friendship: Madeline has her own nickname for Addie. She refers to her as Addie when she talks to me, but when she talks directly to Addie (which is quite often, despite the lack of verbal response from Addie herself), she calls her Ad. Ad, want to play with this little dollhouse together? You like balloons too, Ad? Aaa-ad! Come upstairs with me!

Again, that's between these 2 pals - this term of endearment, this intimate and familiar shortening of Addison's name.

Addie has a friend over. All is as it should be.

Post-play date photo: Rainbow/Crazy Hair Day at school, playing drums with pencils and her new hand-me-down-from-cousin-Audrey vanity.

(update: Madeline cried when her mom came to pick her up. She wasn't ready to go.)

Friday, May 8, 2009

Mother's Day Gift: The Shaft

I just got the shaft. Ripped off, cheated like I cannot recall having been shafted in the past.

Last night I carefully selected my "business casual" outfit as the invitation required. I took out Addie's fanciest dress and rubbed at the little ice cream marks she acquired at her cousin's first communion celebration last weekend. Today we intended to look a lovely as possible.

After Addie and I were all polished up this morning and I dropped the girls off at school, I had an hour to kill before arriving at the junior kindergarten Mother's Day Tea at Addie's school. I reminisced about the first and only other such event I attended 5 years ago when Cate and her class hosted. I remember nearly every minute of it - the kids riled up to have their mothers at school, yet trying their best to keep with the prim and reserved theme of the celebration. I remember the songs they sang at choppy speeds and varied volumes and I remember the first time I was presented with the shrinky dink pin she made that I still wear on my purple trench coat. I remember chatting with the mothers beforehand as we awaited our escorts and getting to know them better as our tea and muffins were served, laughing and marveling at all the things that make us one as mothers.

Today's event with Addie was front loaded with that memory, with the fact that it would be my last opportunity for tea at school as she is my youngest. She did so spectacular at the winter concert, that I dared to form a few expectations this time. There were things programmed into her device that I was to resist peeking at. I expected to cry, to be torn between taking photos and just soaking it in without electronics between me and my amazing girl. I looked forward to chatting with some moms I haven't had much chance to get to know this year.

When we arrived, Addie came to get me in the hall, as the other kids got their mothers. But Addie headed for the door instead of back to her classroom. She thought it was time to go. Finally, I coaxed her back to the room.

We were to sit at the little tables the kids sit at and put on our paper MOM crowns that they worked on for us (the symmetry and organization of jewels on mine made it clear that Addie had little to do with making it). When I found our spot, I saw Addie's special ed teacher and her speech therapist talking and adjusting her communication device. I thought - wow, this is going to be some shindig, if she has not one, but 2 assistants for this.

Our table was right next to the buffet of muffins and cookies. Very difficult for Addie to resist. She flirted with taking one and raced around the room a bit as the other mother/kindergartner pairs found their spots. I managed to get her settled in on my lap, but could tell by her fidgeting, that this would be a short-lived position. When she wrestled away, things were beginning. I stayed in my seat.

Addie left the room. The special ed teacher and the SLP were gone. It was then that I realized with a start that I was on duty. I jumped up and left the room to go find Addie in the hall, missing the welcome the classroom teacher was giving at that moment.

The kids were then lined up to sing their songs. Addie was the leader - she was to hit the button with the recorded song on her device to cue the other kids to begin. But no one had turned the volume up, so the kids did not hear it. The teacher had to start them off. So while Addie still hit the button, it had no purpose, it did not start the singing off. It became just a gesture.

After the songs there was a short slide show, which I missed most of as I tried to distract Addie to stay and watch, to keep the humming and growling she does a bit quieter so the other moms could work up the tears of sentiment that I had planned on shedding.

During the rest of it, I chased Addie, took things out of her hands, tried to engage her in something that would not have her getting in the way of others posing for photos, that would not have her leaving the room, that would be safe for her.

She may have practiced the songs with the class and teachers, but no one practiced with her what she should do when all routine is routed out of the morning and replaced with what seems like a party, but a party with a lot of rules that weren't adapted for her understanding. She did not have a clue what to do. And though Addie has an aide with her at all times at school, this hour was deemed aide free as I discovered on my own. I guess because I was going to be there.

So I didn't cry any tears of pride or love or general gush. I didn't get to know other mothers, I didn't etch another sweet memory to line up next to the first one.

I sweated, I chased, I hushed, I clenched my jaw...all in front of the other mothers. Where I expected to chat about things we have in common, instead I demonstrated all that's different for us to the lot of them at once.

In short, it sucked. For both Addie and I.

I trust I will find healthy perspective of this eventually, but I'm not even going to try looking for it for a few hours.

Monday, May 4, 2009

DynaVox and Augie Nieto in the News Again

Like the Today show a few weeks ago, Fox News did a piece on Augie Nieto and his DynaVox VMax with eyegaze technology. A VP at DynaVox shows some of the units they make - the middle one in blue is what Addie has, though hers is lime green.

I look at Augie's empire each early morning I hit the gym, glancing at the Life Fitness logo repeatedly as I work through my strength training circuit. I take in the DynaVox logo each time my previously wordless child makes her thinking clear to others.

Two companies impacting my own life in hopeful ways.

Check it out by clicking below on Augie's name. Then send the link to at least 2 people you know that you think didn't realize that such sophisticated communication technology existed. Ask those 2 to do the same.

Augie Nieto