Tuesday, December 22, 2009

Wednesday, December 16, 2009

Links

I link you to Links over at Hopeful Parents.

I will return to FJC with the promised winner as soon as I can. In the mean time, read this:

Links

Monday, November 23, 2009

We Interrupt this Program

... for the comings and goings of a budding socialite (Cate), for an overwhelming heap of details and pain (me) and for a series of naughty evidences of increasing cleverness, illness, and victories (Addie). Please excuse the distraction of your judges. We hope to convene at some point over the giving of thanks holiday to name our Found 50 Buck Act of Kindness winner.

Extend forgiveness a titch longer while I gratefully receive a root canal retreat this morning.

Thank you and a warm, hopeful Thanksgiving holiday to you.

Tuesday, November 17, 2009

Forgot to Mention It

...but I was at Hopeful Parents yesterday. Not as a particularly hopeful parent, but as a bearer of weight managing to lift hands over keyboard, anyway.

Still Unshod

May the real me - in new or old boots - return soon (that's hopeful, isn't it?)

Sunday, November 8, 2009

7 days

Just 7 days left to enter the contest described in the previous post. You know you've been thinking about it - submit your idea! Even if you don't think it's the prize-winning concept here, your idea may inspire someone, somewhere to act on it anyway.

Entries will be judged the week of the 16th. At some point that week, judges Catriona and Addison will announce the winner right here on FJC. The winner will find out his or her prize (additional to having the cool 50$ dispatched in their heartfelt and impactful way) and arrangements will be made for the big FJC Interview with a Winner! echo echo echo...

Game still on for 7 more days.

Tuesday, October 27, 2009

Contest: a Long Short Story Made Longer

Remember this?



Unlikely you do by looking at it as I just took the photo today. But the uncovering of this curse and prize last February was detailed in a long short story here:

Wind and Dry Ground

The phone rang on my way out to take Addie to school this morning. And so the story is still being told. Will you write the end?

"Hello, this is officer something-or-other. I'm not sure if you remember me, but you brought in a 50 dollar bill that you found. No one has claimed it, so now it is yours."

No I don't remember you, I thought, but I remember bringing in that bill 8 months ago. I remember being disappointed as I waited weeks for your call to tell me the owner had claimed it, that it was back where it belonged. When I accepted that no such call would come, I imagined (unjustly, in hindsight) the impromptu pizza lunch the officers and staff must have enjoyed. And then I just forgot about it. Now it is mine? No. It never was.

Because of the integrity and follow through of Officer I-did-not-properly-note-his-name, the softened, faded cash is in my foster care for now, though. I don't know if there was really an older woman rendered powerless by the wind, a boy who in his cautiousness about spending had to confess to carelessness having lost it, a mother too preoccupied with the diagnosis of her child to grasp that a half hour's worth of speech therapy for her daughter just wriggled from her wallet. But things like that happen every day. And this 50$ can replace a divot somewhere.

Where?

Here is the contest - whomever comments with the most impactful way to put this tattered bill to work for someone who needs it, wins!

I need both your idea and your quantitative and qualitative reasoning on why it would be the most fruitful soil to plant 50 bucks in. That is to say - I want to hear from both your left brain and your heart (and if you know me, you know I have no qualms about shushing factual rationale if it doesn't defer respectfully to the heart).

Rules:
*Must be judged by my daughters and myself as a somewhat original idea (donating it to well known charities would certainly be impactful, but let's go off the beaten path here)
*Must not require a ton of time on my part (full plate, cup and bowl right now, my apologies)
*Must be submitted here in the comments section by November 15th, 2009
*No limit to the number of submissions per person

The winner will receive a prize yet to be determined, the satisfaction that the money will be applied as he or she prescribes, and the deserved claim to end the story in the first person. He or she will also be featured in an interview here on Farmer John.

(Yes, I considered adding it to the over 16,000$ that Michael raised for Special Friends Foundation over 2 marathons, but I know that you all can think of other precious directions in which to divert this modest measure.)

Ask your kids what they think, your co-workers, your grandmother, your tailor...have them submit their ideas on their own or swipe the ideas without telling them about the contest - your choice.

Let's see how this story ends and maybe another one begins with the receipt of a dirty old 50$ bill.

Game on.

Wednesday, October 21, 2009

See

Pinprick slanted rain spears serve as a smoky filter, not exactly obscuring view, but at least smudging the edges of forms. After picking Addie up from school, we are close to home at an odd intersection at the end of a triangular shaped block. Pedestrians and drivers alike have an extra direction to monitor before proceeding here.

I pull up to my stop sign and make out through the rain a striped hat on the head of a young girl. Her backpack and lack of umbrella lead me to assume she is a high school student heading home, too cool for protective rain gear. The rain spears let up a little. Her striped hat is a woolly home-knit look, extra bunches of material piled and folded on top, her ears fold downward under the band. She holds her curly-haired head perched on a bowed neck, the way tall people sometimes do so as to not appear as tall. I can see her lips moving. She might be talking, but no one is with her. Maybe it's because of the rain, but her clothes don't seem to fit quite right. They hang as if she left before completely finishing all fasteners.

On her round, pale face, her eyebrows strain to meet each other, seemingly knit with concern. I had never seen her before, so maybe this is a natural expression. The girl pivots her head from side to side while her lips move. I think she is checking to safely cross, but the consistency and repetition of the pivot inspire some doubt as to a functional purpose for the movement.

I wait for her to make eye contact so I can assure her that I would not blow the stop sign, that she is safe to cross. She stops. Seemingly without even noticing my car nearby, she turns in a slow circle. Did she drop something? When the circle is complete, she takes a step into the street, only then realizing my idling and still car in front of her. I smile and wave her through, carefully cheerful to make it quite clear that no impatience is felt or intended.

She stops again, right in front of the car. Just past the hood of my car, her back straightens, neck extends, her eyebrows release themselves. Her hand begins to reach up, but she swiftly brings it back to her side and completes her street crossing in front of me. I watch her until she arrives at the other curb.

As I begin to turn my attention to my own safe crossing, the girl turns back a number of times, shifting her head and craning to get a good look in the car. At me. She wants to see me.

Addie kicks the back of my seat as another painful truth shoots gangly tough roots through my understanding.

This girl in the striped hat - a young woman that should be on the cusp believing that the future belongs to her, that the possibilities are endless, without a gray hair on her head, without a line on her face, without a failure under her belt - she is already accustomed to moving through the world unseen. I surprised her by acknowledging that she requires the courtesy of a safe crossing. She did not know what to make of it.

There are humans among us bearing, adapting to, and accepting a state of invisibility. I am deeply ashamed of all the hundreds of times I have could have witnessed, acknowledged, heeded, times I could have extended my human-ness to meet another's...but because I could not readily accommodate the differences, I chose instead, not to see.

I am sorry. I will choose it.

I want to see.

Monday, October 19, 2009

Not Prudent

I scurry in to the library for overdue fine prevention. After dropping the hot stack into the receptacle, I flip through the DVDs and VHS tapes quickly - if I return things, I'm expected to bring something else back home again. Since Addie is very independent with the VHS tapes and scooching to her favorite parts, I search through those. I find Once Upon a Potty for Her. What the hell. I've been showing potty propaganda for quite some time to no avail, but you never know when Prudence and her pot might find purchase in Addie's proclivities.

Already thinking of my next errand and feeling virtuous about needing to pull no cash out this time up to the check out desk, I throw my hasty choices down. I relish the sounds of library checkout movements, the flick and stamp, slide, flick, stamp, slide. The check out person gets to the bottom one - the red box with Prudence on it - and decides it's time for friendly comments.

"Oh, it's time to sit on the potty!"

The librarians know us. Addie makes serious tracks and noise in there and we are frequent visitors. It was a haven of long practice aisles back when she learned to walk for the first time...and then the second time after surgery on both feet. When Addie first got her communication device, the library page was a favorite - "I love the smell of the pages in library books." The shelvers and check out people know Cate and how she endeavors to borrow all titles in a series at once, regardless of the impossibility of her finishing more than one in the 3 week period.

So this librarian who has watched my family grow through the progression of titles we pick, comments that it's time to sit on the potty. She exclaims it with squinty smiling eyes and a congratulatory tone.

I smile back. The closed-lip kind of smile with a slow blink in the middle of it. "We'll see."

Before a shrewd pause in which she could consider who she is addressing can take place, she continues with her cheers, "The baby's going to sit on the potty!"

Baby? Who has a baby? She hasn't seen me with a baby for 5 years.

I pull the diaper out of my tote and set it on the counter to make room for the dated and stamped items freshly borrowed. It is clearly the largest size diaper. I slowly stuff it back in on top of my potty movie.

Still she twinkles and beams and calls after me as I turn. "Good luck with the baby!"

Friday, October 16, 2009

Gone Fishing

...over at Hopeful Parents. Take a break and head over yourself to read:

To Please Me

Then come back and share your own fish stories.

Friday, October 9, 2009

Jarring Mail

I opened a seemingly innocuous piece of mail today and was smacked in the face by it. No, it was not an evaluation or assessment implying my clever 6 year old is really only a toddler developmentally. Nope, wasn't results from medical tests that portend painful procedures in her future. Wasn't even a copy of an IEP written by someone with an entirely different interpretation of every decision made during the meeting. None of that.

It was an offer. A gift. A helping hand. A helping hand that nudged me away from all points of reference I currently hold with regards to my daughter's place in the world.

It was a note from a respite agency we are not currently active with as we have no respite services at this time. But we are still "on the list" and so we get mail and newsletters.

Filled with graphics, fancy and fun fonts, and lots of exclamation points, this mail had 2 parts. Page one was to inform families to call the agency and let them know which kinds of books our child with special needs prefers. At some point after that, we're to come to the agency office to pick up books donated by Barnes and Noble.

The second page asked us to fill out a form that would be posted at local corporations leading up to the holidays. The employees of these corporations would select a form (based on arbitrary things like name, maybe - age, gift ideas) and shop for one item listed on it. We did this where I worked - we called it the Giving Tree. My assumption was that we were giving to those that could not otherwise obtain these gifts. I thought we were fulfilling a need.

But I am confused. My children receive books and toys for the holidays already. We are blessed to not count this among our worries, however modest our giving may be. We have shelves of books, library books from school and from our community library. We have toys and a swing set for our girls. We have enough to eat and can pay our mortgage. To paraphrase, we have enough so that we do not want, and we are able to give others.

As I'm reading through this act of generosity, of charity, I am not grateful. I don't feel prideful either, though it may sound like it. I am dumbfounded that my child is seen as unfortunate and in need. There are children that are, but my child's disability does not automatically put her in such a category.

When I am in the world, I don't see the pity anymore unless it is laser focused on us and articulated as such. I take Addie to school and the dynamic that would make her less fortunate than the other kids, in need of toys, books, food, attention - whatever, is just not visible to me. When we are in public, I don't see cocked heads wishing us mercy, I don't feel a hand patting mine, offering sympathy. I know I am somewhat selective about what I choose to internalize, but those things must be more present than I realize.

If Addie showed up at one of these corporations that will hang the gift tags for employees to grab and shop for a child with a disability, if she bobbed her blond head through the cubicles, if she waddled through, making her happy noises, operating her communication device to find out where the candy jar is (all workplaces have candy, kids know this), if she fixed her eyes on a department director and flung her healthy, squinting smile with a side dish of chuckle, would these people feel good about where their gifts of toys went? Would they feel like they made an impact in an otherwise toy-free, dreary life? Would they feel their part in the lives of those with disabilities had been played, that they can tally that up and cross it off the to-do's?

Probably not. I hope. Again, I don't think my bemusement comes from pride or lack of gratitude. The gesture is a beautiful one and certainly needed in these times all over. But I am confused that my child is automatically a charity target simply because she has a more complicated medical history than many kids, because she thinks, moves, talks differently than many. It feels somehow redundant to me, superfluous, to give my child, who is capable of making her own contributions to those in need, gifts of material things.

This mail reminded me of the reality that often our kids are seen only as receivers, not as givers. Whether this involves pity or a desire to "help" or not is an individual thing. I have had other parents at my older daughter's school comment on how the needs of the kids in special ed negatively impact what their own typical child gets at school, sarcastic comments about these kinds of kids being the "stars of the whole school." If my child is seen as a receiver or someone held up as more deserving than other kids, the gifts she really has to offer herself cannot be recognized, cannot be witnessed, cannot do the work of healing and bettering she intends for her talents to do, as everyone intends their contributions to society to do.

The form from the respite agency asks for a couple options of gifts under 25$, from which the corporate worker will choose 1, to be distributed unwrapped to the parent (so that the parent may use them as the gifts from themselves, if desired) in December.

I know that there is mad desire to give out there, to share - to give effectively, to make something better for someone. It's where this idea of giving toys to Addie and others with disabilities came from, from kindness and compassion, from wanting to lead a life of purpose. And I deeply appreciate it. But I offer an alternative gift tag wish list to ensure the gifts have definite impact on Addie.

Respite Agency, can you post it at ALL corporations, community buildings, schools, retail establishments, parks, entertainment venues..., please? All options listed are free and low to moderate effort. They will not be used as my gifts to Addie, but must come directly from the giver. By giving any of these to Addie, they are automatically given to others and come back to the giver in kind. She does not need these gifts by December, but throughout her entire life, any place, any time. All places. All times.
_________________________________________________________________________________
Name: Addie

Age: 6

Gift idea 1: See me. Don't see me only in terms of my disability. Witness me for who I am and decide whether or not my differences are a tragedy based on how I carry them, how I use them, how important or unimportant they seem to be to me in what I expect from the world and what I have to offer.

Gift idea 2: Hear me. I communicate constantly. I understand that you need to get used to how I do so. I will be patient with you. Try to hear the music I move to. You might find it more similar to your own than different.

Gift idea 3: Let me help you. I can. I am capable of filling a need you may have, whether it's a social one, a practical one, a paid one. I am 6 now, but I intend to do work that I can feel good about when I'm a grown up, to live as independently as possible. If you see me now, if you hear me now, witness my talents, you might just want to hire me, be my roommate, hang out with me...later.

Thanks in advance for your gifts. I can really use these.
_________________________________________________________________________________

Friday, October 2, 2009

Final 2 Miles in the Dark and Rain

Michael shoved off on his last 2 miles of training for the Lakefront Marathon last night. Cate rode along on her bike. Would have been nice to wrap up training with Addie in the jogger, but she's not as game for the dark rain run as Cate is. Ok, it was mom who made the call on that.

Now that training is done, for Michael I imagine it's a matter of carbo-loading, weather watching, logistics arranging, handing hammer gel packs to his fans to toss to him at water stops, getting psyched from now until Sunday. And a matter of thanking.

Thanks to all who have supported Michael in so many ways as he's endeavored his 3rd marathon, his second fundraiser for the Special Friends Foundation.

There's still time - the site will be up for a bit. Please send the link to anyone you know with an interest. If you're a local, drop me a line to see where you can station yourself as a cheerleader for Michael on Sunday morning. Or even just drop a comment here to wish him luck. I know he appreciates any and all of the above ways to get involved.

Catch you on the other side of the finish line!

Just before a father/daughter training run last month:

Tuesday, September 29, 2009

You Keep Coming Back

Thanks for visiting and visiting again. 20,000 hits! I don't always have a story for you here, I sometimes point you in another direction and I even serve up reruns. But you keep coming back. Thank you.

Addie knows a little somethin' about sticking to it. I offer a representative sampling of the photos and video I took over an hour long period as she demonstrated how she learns things. Cate is an enthused and encouraging teacher. The right instruction is important, but exposure and observation laid on top of a fluffy and plush bed of motivation is where the magic is for my small wizard.



Addie hasn't actually hula'd to her satisfaction yet. But you can see that she intends to do so before long. Come on back. I'm willing to bet I'll have a camera with me when it happens. You know I'll be up here hollering about it.

Thanks again for 20,000!

video

Thursday, September 24, 2009

I Heard It

Today I heard a phrase that floats around among others in my daydreams about Addie's life, about my squishy, ever-changing hopes for her future. It never made it to my daydreams about Cate's life because it was just an assumption for her - not so much the milestone I see it as for Addie. I heard it for Cate at some point, but barely registered it as more than the 3 word utterance it is.

Today Addie and I walked past the parked and waiting cars along the block of her school. I park a bit farther away so that she can get used to walking a bit, paying attention to the crossing guard's directions, and practice navigating with her backpack on.

As we approached the halfway mark, a car door slammed behind us. Addie usually stops and looks in the direction of each sound we hear, including cars passing, so you can imagine this walk takes a while. But instead of her noticing the slam, I was attuned to it for some reason. My ears were perked in that direction just in time.

"Addie! Addie!"

A frantic and excited voice emitted from the direction of the slam. Neither Addie nor I had time to turn around before the daydream phrase rang loud and clear above the accompanying sound of friendly running feet and a backpack bouncing up and down in rhythm with each step closer.

"Addie, wait up!"

Tuesday, September 22, 2009

What Goes on the Mantel This Year?

Uh oh. Picture day again. What's gonna be in frame this year?

I offer you a leapfrog list of links to picture days past. Yep, reruns.

Grandma's Mantel (picture day 2007)

Another Swing at Grandma's Mantel (picture day 2008)

Grandma's Mantel Graced (picture receipt day 2008)

We'll see what we get this year.

(We shall return to our semi-regularly scheduled full blog posts instead of links to elsewhere as soon as I find a couple more hours in the week somewhere. The school year is off to a fabulous start. Fabulous = busy as all get out.)

Tuesday, September 15, 2009

Space Bag

My post is over at Hopeful Parents today. I nudge you over with the thought that if you've loved Addie since she was a baby, the post should ring a bell. If you have grown to love her in the past 4 years, you get to travel back in time and get our "diagnosis announcement."

Click here to give it a read:

Space Bag

Thursday, September 10, 2009

Starting Gate...Finish Line

In just a few short weeks, on October 4th, I will again be sorting through all the shiny shaved heads of handsome lean men bolting by (already having weeded out the women, whether shaved-headed or otherwise), looking for my beloved. Cate will be searching with me, holding her bells and her sign. Addie will be hitting buttons on her communication device "Go, Daddy! You're winning the race! Run!"

Michael's 3rd entry into the Lakefront Marathon will have him at the starting gate early that Sunday morning. For the 2nd time, he has created a firstgiving page to raise funds for a foundation supporting Rubinstein-Taybi Syndrome families. It's called Special Friends. Last year with the help of friends, family, strangers and the William Starck Foundation, Michael was able to raise nearly $11,000. This year he is about to reach $5,000.

Michael runs because he loves to run. He runs because he has discipline, endurance and respect for his own well-being. He runs to set an example for our children - one of a healthy lifestyle, of taking time for oneself, of setting and reaching personal goals, of the satisfaction one gets from pushing oneself. He runs for our Addie who has taught us what strength and power really mean - that they are not external things, but things intrinsic that we are each charged with finding and pulling out of ourselves.

We try hard never to lose sight of how fortunate we are that both of our girls are happy and healthy, that they go to good schools and are taught by teachers who see their value, respect them enough to expect contributions from them, that we have the resources where we live to get programming for Addie to keep her healthy, challenged and progressing. We are lucky that we can take advantage of parent education in the world of disability, that we can give back by supporting other parents locally, by addressing future special needs professionals with our perspective as parents, that we have fulfilling relationships with so many involved in both the worlds we are part of.

So Michael runs for himself, but also for our big RTS family out there. Thank you to all of you who have become involved in his cause through your personal support to him, your spreading the word about his run, your direct contributions to his drive. Thanks to my blogfriends for shouting out about the run, too.

There's still a few weeks left - blast the link out there, talk about it, drop a few bucks in the hat... Do it if you run, if you love Michael, if you love Addie, if you love another RTS darlin', if you love someone else with difference. Michael could not and would not do it if it weren't for all of you. When he sees us at the finish line on the 4th, he will know all of you are present by proxy, too. We rarely do anything without you all in tow.


Michael and Addie upon their return from a 6 mile training run. Addie says "Daddy's number 1!"

Friday, September 4, 2009

Four For Friday

Click on the last one for a glimpse of her new gap.



Friday, August 28, 2009

One Less

Once again, without any ado, Addie woke up with one less post in her white picket fence. You may recall that last year Addie lost her first tooth on Father's Day (link). I was again the last to know as Michael and Cate informed me they looked everywhere in the cottage for Addie's tooth on Wednesday morning. We are on vacation.

Once again, Cate wrote a note and the tooth fairy delivered 6 shiny quarters on a plate under the bed - 6 quarters that make no difference in the world to our gappy girl.

I will add crystal #2 to my secret stash upon our return on Saturday.

We're growing up over here. Senior kindergarten is just a few days away.

Sunday, August 16, 2009

Stay or Go

Go... over to Hopeful Parents because that's where today's post is. I am Insideout510 there. Check out Addie's latest:

Stay or Go

She's taken all your birthday wishes on and off blog to heart. Thank you.

Friday, August 14, 2009

Addison of 6 Years

We'll be singing/signing Addie's favorite song today - the only song that is always followed by cake with candles. 6 candles for our sweet today.

Addison, your 6 years have held more than many see in a lifetime. You've had your struggles, your pain, your setbacks. And each time, you amaze us with your verve, your determination, your resiliance and sense of purpose. And each time, your smile grows more rooted, your power more fierce, your beauty more intense. Your example has set my perspective on a different course countless times.

It's true - the force within you is so much stronger than any force that is against you. I watch you as you fly.

Love you.
Mama

Wednesday, August 12, 2009

Teaching Learners with Multiple Special Needs: Wordless Wednesday (Sorta)

I pull this post from my sidebar into the main page because it is so very critical to my child's well being, as it is for all of us. Parents and teachers spend most energy taking care of those bottom tiers with our exceptional children, without a lot of creativity for the rest of our child's basic and essential needs - sometimes because the physiological needs and safety take all we have...

Drop a comment - let's talk about it.

Link:
Teaching Learners with Multiple Special Needs: Wordless Wednesday (Sorta)

Tuesday, August 11, 2009

Nighttime

They go up and I stay down. It feels like waiting. Like playing a game, like something contrived. Still. Silent and solitary, save the keyboard.

It reminds me..

Of me.

Friday, August 7, 2009

I'm a Hopeful Parent, Are You?


Have you heard of Hopeful Parents? It's a website dedicated to supporting parents of children with special needs. A group of candid and thought-provoking writers blog daily about their individual experiences as Hopeful Parents. I write every month on the 16th as Insideout510(see 2 Per Bag)and will also serve as a co-moderator of the future forum.

We're looking for beta testers for its new community site -- forum, groups, chat, etc. If you're interested, let me know by dropping a comment below with your email address. If you don't want to include your email address here, just give me a heads up and we'll make other arrangements.

Hope you consider becoming involved this safe, hopeful, constructive community.

Tuesday, August 4, 2009

Multipurpose Mom

(Found in drafts from July 21st - we are a trio of individuals again)
Some days I feel like Addie and I are one person again. On those days, our moods match, our thoughts match, inadvertantly sometimes even our clothes match. On those days we cannot be rent apart - we want to swing at the same time, we want ice cream at the same time, we feel like a stroll or a swim at the same time, we need a break at the same time. And we get cranky at the same time.

But today I am not the same as Addie. I am just the woman who will always bring her a cookie when she signs for one. I'm that lady that will unfailingly bring it and unfailingly ask for an "extra large kiss, please" upon delivery. When Addie sees the cookie, she holds out her hand and her cheek at the same time, not giving the kiss, but smartly willing to accept one, at least.

Today I am servant. Tomorrow I will be an extension of the boss again, I'm sure.

I miss Cate. Camp will be done soon and we'll be back to our usual kicking around together, the 3 of us.

Sunday, July 26, 2009

A New Dimension Opened Up 10 Years Ago Today

The Can't Contain It I'm So Happy Dimension.

Cate arrived at 7:23pm on 7/26/1999 and changed us forever. She made us parents, she redefined all points of reference for us, she shuffled and settled our priorities and she taught us new meaning in everything. Most of all, every single day, she reminds me to look for, indulge and radiate all that is good and joyful.

Happy 10th birthday, sweet Cate. You are truly the (lime green neon)light of our lives.

Friday, July 17, 2009

The Stare as Defined by Pollyanna

The stare. You get it anywhere from any age. It is more overt with children, but furtive and broken up by those that think the act of prolonged ocular focus is impolite, but who cannot resist stealing successive glances anyway.

It doesn't matter how obvious or subtle the differences for your child (the staree) are, if they can be detected at all, whether physical, social, intellectual... attention will be attracted. Unavoidable.

It feels like a judgement, like an insult. We are offended by these stares and the bold among us have some zingers to fling at gawking children and adults alike. We feel justified and even righteous having flung such. We tell our disability-parent friends how we stood strong and shook our fists for the team.

Or we shrivel and retreat, possibly gelling in a young mind the fledgling idea that maybe differences are indeed not to be celebrated, not to be tolerated, not to be witnessed.

It's been established that I wear cheerily-tinted glasses - sometimes one pair on top of the other (orange or lime green, for rose is just not my style). If I could braid my short spiky hair on each side like Pollyanna, I would.

I cannot say when or why, but at some point, these affronts - these stares - turned into questions for me. Questions someone either is afraid to ask or doesn't know how to put words to. Eyes on my child use to bring to mind the sizzling sound of a branding iron on a livestock rump. But now I see the arc of the gaze as an outreached hand. I can take the hand or I can shove it back. If I fling it back with my zinger or with my huffy or hurt exit, one part of the 'question' can be answered: yes, parenting of differences makes you bitter and forgetful of what it was like before disability became a focus of your life.

It's hard to take the hand. For me it's easier with kids because they aren't debilitatingly embarrassed when caught in a stare - backpedaling is a decidedly grown up reaction. With kids I see their shoulders unhunch with relief that the topic has been opened when I ask "Oh, you seem really interested in Addie. She loves meeting new people. Let me introduce you and then you can ask us the questions you have." Either that opens the floodgates of inquisitiveness or the child very simply decides it's now OK to try and engage with Addie. Either way, the great divide has been rendered less great.

I have not forgotten what it was like before disability stole through the door and sat it's larger-than-life ass on my lap permanently. Before, I was hesitant and uncomfortable when considering social interaction with a person with a disability. I did not ever know if looking away was better than staring or vice versa and I knew nothing of what was possible in between the 2 extremes. I had to observe an individual first to gather clues about how to approach in a way that would preserve that person's dignity. That is what manners are - we meet someone new and lean on manners to assure the other that you mean well. This is not simple when faced with differences in ability. The old standbys might not work, how do I convey my well-meaning? If I talk, can she hear me? If she can't, what are my options? If I just smile, is that patronizing? If she signs to me or speaks and I don't understand, it it OK to look to her caregiver or companion for translation? She doesn't look at me when I talk to her, is she hearing me or understanding me or not - which assumption is better to act on? She is on wheels, what if I slip and throw in a phrase like "just walking around" or "get up and go," will that offend? She is humming and flapping, do I talk as though she is not, or acknowledge it? And what does it mean, the flapping? Is she open to engage or not?

So many questions not fully formed at the moment, but there nonetheless. Staring people are curious, but it's also a process of assessing how to interact and communicate with the other, should the situation arise. It comes down to a desire to maintain dignity. As the parent of a child with differences, I can take a more active role in helping others understand how to fit my daughter into their social frame of reference.

It isn't easy to be new around my daughter. I understand that. Observation is often needed first. OK. Stare a minute. Then I'll take the hand extended, make introductions and answer questions, whatever words are used to form them. When the intention is clarity seeking, being politically correct is not a priority.

Closing the divide between my daughter and the speaking, neurotypical world is.

Wednesday, July 15, 2009

Not in Today

I'm not here, I'm blogging at Hopeful Parents today. Come check out my post. I am Insidout510 over there...

2 Per Bag

Wednesday, July 8, 2009

The Was Is Bug

Addie saw it first. As I was watering the newly planted annuals in the yard, I recognized in her the interested squat, cocked head and the beginning of a greedy swipe. She loves to watch insects and spiders, then "feel" them with a giant's heavy hand. The look of shock on her face is genuine when she discovers post-swipe her friends lying motionless and mangled on the pavement or deck boards. They just ruined all the fun by croaking under her loving but destructive affection. It's hard to teach a kid with a cognitive disability about fragility, about moderating interaction based on a durability assessment of the object/person first. Lenny never really caught on to that lesson, despite George's best intentions.

So I stepped over to the fence when I saw her rear for the swipe. I am taking as many opportunities as I can to help her understand when gentle observation will make things (beings) last longer or interact with her longer.

"Gentle, Addie. Just watch, don't touch."

I've also been taking photos of things outside she shows interest in for a slide show for her. Lots of bug and flowers, tree branches from the trunk's view. So I said for her to hold on, I'll get a picture for her.

She held on, knowing my camera was in my pocket as it usually is when I am with her. She waited. I expected to see a black ant or spider, certainly not anything with wings that surely would have taken off when her shadow darkened the perch on the fence.

But Addie had something a little more special to show me on our fence post:



She waited for something to happen. She reached again for it as I took pictures, but I stopped her in time. Eventually, seeing that it had my attention, rather than her having it, she sidled away, back into the yard to look for more sticks, bugs, standing water...

I watched it a long time. Movements were barely perceptible, but I believe we caught the cicada at the very completion of shedding the old outer layer. The photos do not do the color of the new look justice. The green framing up the ethereal wings looked almost plugged in it was so bright. But tender. You could see how delicate, how new, how fragile it was. And wet.

The cicada stood on it's old self, waiting for it's new self to dry, to grow sturdy and strong. I sat down and waited with it.

It, as everything does, reminded me of my girl. Reminded me of the differences between myself and her. When I shed something old, I cannot wait to get away from it, to kick it away violently, arrogant that the new me (attitude, skill, idea, whatever) is stronger and better than the old. That the old is useless and almost shameful. But of course there are times when the new isn't baked enough, strong enough. I look back for the old, but I've already destroyed it.

This cicada subscribed to Addie's method of change. Addie rests on the old skill (idea, milestone, motivation...), the tried and true, clearly strong skill while observing and waiting for the new to emerge stronger, complete. She reveres the old, clear on how necessary it is, how it is the mother of the new - the current new and the future news. She never forgets where she was and uses it to get where she's going.

Reluctantly, I left the old/new cicada to take Addie to music therapy. When we circled the red wagon back around in the driveway upon our return, the cicada had flown, leaving the old shell intact. You never know, she might need to come back to it.

Cicada song will start here in a few weeks. Addie and I will talk about the music they make using the sign we made up for ourselves - "old/new bug." We plan to try and record a snippet of the wing music for a new cicada page on her communication device.

Friday, July 3, 2009

Freedom

As the 4th of July has smacked us with it's hasty arrival, I think of all the words and phrases that come with the red, white and blue: independence, freedom, potential, liberty, out with the old/in with the new, possibility. But for me, it's not just visions of flags, marching bands and sno-cones called up this time a year anymore. Another day now comes to mind.

Forgive me for the rerun, but that is what summer is for. Please come back with me to a day last summer. It's a turning point of a smaller scale than the original Independence Day. Like the original, thoughts of this new independence day incite triumphant tunes to herald, fireworks to splinter... in my world, anyway. Click the link below to rehash the victorious day with me on this holiday weekend.

Gauntlet Retrieved

Addie's scoop and kick are even stronger now. Many similar conquests have followed.

Be safe, enjoy. Take up a gauntlet for freedom's sake.

Monday, June 29, 2009

Can't Blame Her This Time

(Delayed post from June 19th)

Finally, I laid down, bone-tired, as they say. Long day of errands, wagon-pulling to parks, general pivoting between the polar opposite requests and preferences of my 2 charges. Ankle still slightly swollen and achy from a freak fall a few weeks ago.

Solid sleep was imperative. First, to ensure an increase in patience from the day before, but also because today is Michael's birthday. Surprises and other preparations must be complete by the time he gets home in the early afternoon.

I laid down and was immediately reminded of one of my early mistakes of the day. In my summertime laissez faire attitude, I did not stop Cate from eating a bagel in my bed. Her excuse, while it would not hold during a school year schedule, seemed plausible on a vacation morning. She needed to eat it on our bed so she could continue to watch junk TV on Qubo, while sewing 100 little pillows out of scraps of material. I still try and understand why we need so many colorful little puffy rectangles when I know of no head small enough to find comfort on them. But to Cate, it is necessary. And I'm sure she was trying to impress me with her industrious mini-me multi-tasking.

The fallout from the bagel was downy and soft at one point, but prickly and sand-like 13 hours later. Yes, it could have been anticipated and cleaned up. But I am not a bed maker. It seems fruitless to me. If Michael leaves before we roll out of the sheets, they stay tangled until bedtime again. So I forgot about the bagel crumbs until I sank into them last night.

I brushed away as many as I could, but in my state of exhaustion, did not have what it took for any thorough eradication. Once I made peace with the crumbs, pretending they were actually sand, that I had been to the beach and so the friction was good, I read and then ran through before-sleep random thoughts. This takes a while. I know I fell asleep for a short while.

Then the sky cracked - light was not the exception, but the rule for a few hours. Fat, rapid drops pounded the roof outside while inside looked like the sunniest day. Thunder threatened and growled, shook the windows in sudden and close swipes. Between, with the pillow over my head, I could block out the constant lightening and doze a bit. But only seconds, maybe a minute would pass before another smash that bolted me upright, out of the bagel leavings. After each, I waited for Cate and Addie to come rushing in, one of them crying, if not both.

But they did not come. Today Cate said she heard it, but that before bed dad told her to expect some thunder and lightening. That's all it took for her to make peace with it - forewarning. Must put that in my bag of tricks.

So I flipped and flopped, assaulted by noise, light and carb crumbles until the storm wore itself out. I thought that finally I'd fall into a renewing sleep.

Alas. Michael fell asleep first. He doesn't snore in the typical cartoonish way, but lets his exhale out with a little "PfP!" puff of his lips. Quiet and subtle, but rhythmic enough to demand attention. I shuffle around, try to get him to change position so I cannot hear it anymore.

Just as I am working on that, I do what I should not do. I look at the clock. 2:40am. The intake of the hour makes it swiftly from my brain to my stomach. My stomach can tell time in hours since it's been satiated. Hunger. Sleep-depriving hunger that is derived from being sleep-deprived. So unfair.

I don't know how long that lasted or when Michael stopped his birthday eve sleep-puffing because I did eventually fall asleep. Just before the alarm rang for me to get up and get to the gym before Michael has to leave for work.

As I yawned and lifted my meager weights at the gym, the justified haze lifted as a realization was foisted on me - I had a sleepless night - but my little non-sleeper parasomnia/apnea girl had NOTHING to do with it. She, her sister, her father, caught all the zz's necessary.

Good morning. Happy birthday. No, thanks, no bagel for me. Here are your surprises and cakes. Good night. Oh, and I love you through your crumbs and pfp sounds. Straight through.

Thursday, June 25, 2009

Counts

Belly up to a smokey bar, I sat between my future husband (though that had not been determined yet) and a friend of ours. This was probably 15, 16 years ago. It was an establishment busy on the weekends (which start on Thursday in terms of happy hour), but low key on this day. Probably a Tuesday or Wednesday afternoon.

Our friend seemed carefully placed where ever he was with the intention of providing counterpoint to anything perky. He spoke in a low, raspy smoker's tone, a cadence slow and peppered with dramatic pause and a killer Midwestern accent. His eyes were open as wide as I'd ever seen them at half-mast. His head hung on a slightly bowed neck, also suggesting energy meted out through only the smallest of openings. He held his cigarette still, slowly hauling it up for a puff after long breaks. The only thing that belied more focused and sustained energy may have been his ever perfectly coiffed salt and pepper hair.

On this afternoon, our friend Coop regaled Michael and I of his finite heartbeat theory. He reeled us in with each of its tenets. We half smiled, knowing that Coop intended both to entertain us and completely convince us simultaneously. Coop was usually highly successful in his attempts to amuse, maybe not so much in his attempts to sell his theories and tales of personal adventure.

According to the thinker at the bar with us that day, all living beings are prescribed a certain unchanging number of heartbeats when we are born. This number is unknown to us, and cannot be diminished or increased by anything we do. Our task is simply to chose how fast or slow to spend down our heartbeats. He maintained that smokers, drinkers and the "less clean" living among us spend them faster by choice. Those that choose to live virtuously are simply hoarding heartbeats to have a few extra when they are old. Exercise and cardio work is a bad idea - also burns through heartbeats quickly, but is considerably less fun than partying, in the book of Coop.

I have thought of his theory hundreds of times if not thousands of times since he unveiled it to us that day. I run situations up against it, play with it, think about how many heartbeats a glass - or a bottle - of wine costs... I wonder how many heartbeats my kids each have been allotted, how they will spend them. I joke with myself internally that Michael is squandering precious beats with his marathons and training.

I was made to think about it again yesterday when I heard the news that T. Christopher Cooper's countdown of heartbeats reached the single digits and then ultimately, reset to zero. Coop died early yesterday morning at the age of 46, the same age as my dad when he died. I wondered if the number was revealed to Chris at any time, if he got to count along as the numbers wound down. I chose to believe that he did.

Rest, friend. No more counting, spending, saving. You have made your mark in many places, people, hearts. We are honored to have cashed in some beats with you.

Peace.

Monday, June 15, 2009

This Week in Pictures

Mostly last week and a tiny bit of this week. Pictures have to be worth all the words usually found here. Summer is less about narrating than it is about doing. Sustaining blogativity will likely be a matter of my natural reflex to slip a camera between me and the good stuff.

Addie had a cold, but fun time at her end of the year class picnic. The treats were the best part.



When we came home, she and I considered the garden and hoped things would bloom soon.



The next day, our hopes were realized.






That same day, face-painted Cate had a blast at her own end of the year class picnic, as did I, as team coach of the single-bean-on-a-plastic-spoon transport challenge.




Which takes us to the next day, in which we thoroughly enjoyed an evening our local zoo set aside purely for the enjoyment of people with disabilities and their families. We ran into a lot of people we knew while soaking up the animal oogling and the peaceful twilight zoo train ride.





Addie was riveted by the traditional zoo attractions, but was not certain what to make of the blue-haired, stilted, woman with a high pitched voice.





After yet another sun/moon swap-out, it was time to say goodbye schoolyear, hello summer. Addie seemed to understand she would not see some of her favorite ladies for a while. The first is her classroom teacher and her idol. In the second, she is a bit more concerned with watching the shadow of her feet, but she sits on the lap of her special ed teacher, whom we all adore because she sees Addie with complete clarity and therefore demands the best from her.




Cate looks jubilant here as the final bell of 4th grade rang, but what she was unaware of then was the firecracker of celebration-worthy news she held on her back, in her pack, sealed in an envelope. Later we all whooped it up as we perused the girl's BEST REPORT CARD EVER! Now she too, knows what she is capable of.



Below, everyone awaits the arrival of Cate and Addie's 2nd family to pick them up. The Bautista's took them on an overnight adventure so Michael and I could have a lovely evening to ourselves (this is a "before" of Michael - he just went for a run and was to clean up for our dinner on the river just after the photo. K, pal? Good enough disclaimer to still post it?).



And the best event of all, according to our Fish Called Addie - we made it to "her" pool for the first time this season! She was so relieved that her joy still existed, that the beginning of hours a day in the water finally arrived. And Cate wasn't too broken up about it, either.




The girls are used to being able to splash around in our little pool at home after we get back from the big pool, but it is in disrepair and will probably require complete replacement. So we hauled out the...Slip n' Slide...by Whammo! (if you're old enough, you hear the mail order commercial in your head when you read that). Addie found it to be naught more than a really unnecessarily elaborate drinking fountain. Cate gave it a try a few times, but was still a bit ginger about it. The biggest kid in the house, the birthday boy of this week, seemed to enjoy himself to Addie's delight, though. Click on the photo so you can see Addie's gob open wide in amazement.




Better go charge the camera battery, we've got a fresh week to devour.

Tuesday, June 9, 2009

15000

Take a bow, Addison. 15,000 hits!

video

Monday, June 8, 2009

Two More Holes in Her Head

My sweet firstborn, Catriona, added 2 more holes to her noggin today. At Claire's.

We talked about getting her ears pierced for her 10th birthday next month. To be honest, she wasn't exactly bowling me over with incessant declarations of desire, so I was just going to let it happen, or not. But as I was thinking about what a great year she's had, thinking about how hard she's worked, all she's learned and all she's taught...and thinking about more practical things, like if she has to wear the studs for 6 weeks, earrings as a b-day present would be sort of a dud since she can naught but stick them in a drawer for a month and a half... So I offered last night that she could get them done whenever she wanted, if she was still interested.

Sweet thing just needed to be uncorked - she was beside herself with joy. Tomorrow? Ok, tomorrow. She never told me until my offer, that aside from the girl who vowed never to get her ears pierced, she was the only girl in her class without the ability to accessorize her lobes. Hm. What do I know? She's my first. We had to wait until we were 16 when I was a kid (though being the youngest of 7 girls, I do believe I shaved a few years off of that and found myself in the chair at about age 12).

Her enthusiastic response put a trip to the mall on the schedule for after school today. In the middle of a storm. Which she never noticed.

When we arrived, I was certain all bets would be called off. Right in the entrance by the piercing chair, there was a girl just a year or two younger than Cate crying as her mother tried to coax her with words and a few physical yanks, to sit and go through with it. I watched Cate, expecting her to change her mind. I'm sure she ran through her options, but then I had an idea. After getting Cate's permission, I told the store manager to offer to the girl's mother that Cate go first so the young girl can see how it goes before opting in or out. The manager skipped talking to the mom and went right to the girl with the deal. The mom skipped any answer from the daughter and told Cate that yes, that might work. So Cate went first.

Here is the last shot of her kiddie-clear earlobes, with an anticipatory grin between them -



I did not get the photos of them being done because it took only seconds and because I wanted to be ready in case there was a squeal or any other drama. There wasn't even the slightest flinch.

All done -


The younger girl continued her resistance for a minute, but by the time Cate had picked out additional earrings to buy (to put in a drawer for 6 weeks), the girl was in the chair, on her mother's lap. Two seconds and a few tears later we were all cheering for the girl. She'd done it.

After the relief of having it over with wore off for Cate, I could see her face being taken over by the thrill of entering the realm of big girls with this rite -


We needed to do something for Addie since she had to sit in her push chair for all this, so we went to the tiny play area in the mall for her to run around. I was commending Cate for her bravery, amazed that she had not so much as grimaced. I had to ask, wondering how much things had changed since I had mine pierced so many years ago, "didn't it hurt even for a second? Your face never changed - smiling the whole time!" I marveled.

She said that yeah, it hurt for a second actually, but "I didn't want to break my smile for the girl because I hoped she would still want to get hers done." That comment invoked the first tears of the event for us - mine. I get to live with the kindest person I know. That earned her a trip to nab some ice cream while we waited for the storm to subside a bit.

Addie liked that part of the ceremonial piercing best of all -




On the way home my eyes floated a bit again. I checked her in the rear-view mirror a few times as we drove slowly through the dark drenched streets. Every time I glanced, she had that "the world is my oyster" grin with the matching knowing squint to her eyes. You remember that look from when you were a kid? When you felt kinda bad for anyone that wasn't you that day? I live to see that look on my daughters' faces.

Despite the thunder and lightening, the wind, the wicked angle of a driving rain, the tornado warnings in surrounding areas... it was in fact, a day I think Cate and I will always remember as exceptionally bright and glittery.