Farmer John Cheese and Other Joy

Ought To Be

2012-01-16T06:29:00.001-08:00

My Hopeful Parents post day fell in a good place this month and I am grateful.

Ought to Be

Wishing you both peace and the power to change something - today and every day after it.

Factory Axis

2011-12-17T07:16:00.000-08:00

I was up late, late, late last night, at Hopeful Parents, decorating a page for you all. Sadly, I hit publish at 12:01 and missed my scheduled date of the 16th.

Come back to my Christmas Eve in 1991 at:

Factory Axis

Peace, joy and new adventures to you for this holiday season and into the new year.

TH-E (aka: FJC, Insideout510)

50,000 and Counting

2011-12-10T13:25:00.000-08:00

I celebrate surpassing 50,000 hits with, of course, a repost! While I did not receive this particular piece of mail this year, I think of it every time part of who my child is is twisted into becoming someone else's feel-good charitable act of selflessness - more often this time of year. I appreciate acts of generosity and kindness and the intention behind them. But we have two happy, healthy children living full lives in our home. There is real need out there. One needn't search too long to identify and address it.

Readers, thank you for your vists and revisits to Farmer John Cheese. We love having you here, 50,000 times and beyond.

Jarring Mail, from October of 2009:

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.
_________________________________________________________________________________

That Thing I Don't Talk About

2011-11-16T08:20:00.000-08:00

I'm at Hopeful Parents today, though I've had more hopeful days.

That Thing I Don't Talk About

I can trust you with this, right?

Reminded to See

2011-10-16T16:53:00.000-07:00

Today's Hopeful Parents post is a recycling of an FJC post from nearly exactly 2 years ago. A variety of factors make it timely once again.

Here's hoping for a world full of seers so that all might be seen.

See

One Day Late

2011-09-17T17:29:00.001-07:00

Delayed by one day, my September post at Hopeful Parents is up. It's a little story about a lady who got to lay her protective gear down and take the day off.
Click over and check it out:

Extraneous

Something to Talk About

2011-09-06T13:52:00.001-07:00

The September issue of Complex Child e-Magazine is out and once again, it's all about communication!

Read the whole issue to learn more about the importance of communication for all populations and about the assistive technology that some use as communication tools. There is also a brief article by a voice you might consider familiar, with a photo that might also have a familiar mug in it.

Complex Child, September 2011

This will rev us all up for International AAC (augmentative and alternative communication) month in October.

http://www.aacawareness.org/

Let's make communication for all something EVERYBODY'S talking about...

Local Boys Take Title in Head-to-Head with East Coast Grandma

2011-08-24T12:34:00.000-07:00

She tosses her diving sticks where ever there is a space wide enough for them to make their slow sink to the bottom. Whether or not her body will fit in the space when she retrieves them is of no concern. People always make way when you just wedge yourself in, in her experience.

Dolphin diving in the area just up to her chest, she ignores all the kids jumping off the side into the arms of moms, swim teachers, babysitters, grandpas, big sisters. She mastered the jump long ago and now works on her elegant, smiling arc of a dive from standing to underwater. She doesn't appear to take any deeper of a breath before heading down, but she can hold it as long as it takes to pick up all she scatters at the bottom. It's alarming when she lingers, but if there is one thing she's taught me (and there is way more than one), it's that she knows what she's doing in the water.

As she submerges her smiling face and sinks top first, her feet flail out to either side in one efficient double kick, sinking her lower half just as she picks up her treasures and arches her back to come out face first. As she rises, you can see her eyes have been wide open the entire time, her mouth has been shaped into a toothy grin of victory since grabbing the first dive object. Smiles without fail, even when she's on her hundredth dive of a single afternoon.

She loves her power in the water and does not concern herself with others, least of all grown ups, while in her element. This focus will serve her well at swim meets one day.

Next to her, a dad and a pair of grandparents form a wall of fanhood as they coax the 3 year old girl they clearly adore to jump into the water. Shoulder to shoulder, they each have their own messages of encouragement, delivered on top of each other's, as though in competition to see whose words will be the catalyst, whose arms she'll end up in. The girl, as any smart 3 year old would, delays her feat as long as she can to hold this rapt attention hostage for the duration. When she finally bends her knees to jump, Addie enters the field between her and her fan club. Despite others having passed through, at Addie's entrance, the girl lets out a blood curdling scream as though she'd spotted a scorpion or the devil incarnate. Though they see the source of her unfounded terror, the girl's primary teachers - her parent and grandparents, those she looks to to shape her own world view - do nothing, say nothing. They simply stop their chants and join her for a prolonged stare at Addie.

When I realize they will take no steps to explain to the child that this is a shared pool, with shared space and that Addie means no harm swimming by, I calmly suggest to Addie that she look up to see that someone wanted to jump there. Addie's response, as I expected it to be, is to keep her course and swim to the other side of the adoring wall of grown ups at her own pace. And that is fine with me. The princess is free to calm down and jump, now that the embodiment of danger has moved on.

Before long, Addie passes back behind the human wall to her starting point and tosses the dive sticks near the girl and her groupies again. As she dives down, Addie's leg kicks just inches from the girl, spraying a face-full of water on her. I prepare for the screech. To my surprise, the little girl looks properly shocked, but doesn't seem to have plans to complain about it. She had just been underwater and kids her size were all shoulder deep, bound to get splashed. It was not destined to be a big deal, she was apparently over the horror that is my daughter.

But grandma takes a different tack and gasps with exaggerated flourish as though Addie had chosen the girl from the crowd and delivered an uppercut to her little fragile jaw. Grandma scoops princess up and wraps her in protective arms as she lays an accusing glare on my just-out-from-under smiling girl. Grandma hauls out her best Jersey accented baby talk. "Oh, I know, baby, I know. You'll be alright, honeygirl, grandma has you. People come by and just splash you in the face and don't even say anything. I know, I know, it'll be ok. You won't have to swim by her anymore."

The words themselves inspire the delivery of a diatribe from me, but the out of town accent slows my counter-attack and allows me to cut her some slack. She must not see princess very often. This is a special trip for her and she's trying to get a lot of grandma'ing in while she can, making up for lost time, perhaps trying to offload some long distance guilt she feels. Maybe she never saw princess as a baby and is not sure how to jump right to relating to a pre-schooler granddaughter. The dad actually had a brief comment for grandma to stop making such a big deal out of it, that she recovers quickly. Grandma doesn't seem to hear or want to hear this.

Whether or not they realize that the evil splashing girl's mother is standing right there signing to her daughter, I do not know. But I bite my tongue and move on. I like to save my "teaching" for the youngest detractors Addie encounters. More fruitful to plant in newer, moister soil.

At the drama the grandmother is whipping up, Addie circles back, not surprisingly. She tends to gravitate towards extreme reactions - very curious about guffawing, crying, anger, grown ups over-playing up the victim card... Now that she knows this group is capable of extremes, she intends to linger.

Princess is about to jump in again as she spots Addie a few feet behind her fan wall. Again, a scream as though a stabbing had occurred. Shoot, I thought the kid was over Addie, but I guess grandma took her back a few steps with her ridiculous splash reaction. All three adults flick their heads in Addie's direction and make a simultaneous comment to this effect: "Oh, there she is again, we better move."

And thus, they cheated their princess out of a chance to understand how the world works, how people are different, how we should try to see things from other perspectives, how valuable forgiveness is, how useless avoidance is, how curiosity can stomp out fear. Princess's grown ups treated a non-verbal child with a disability the way one might treat a remorseless, repeat offender bully. They demonstrated that Addie was not worth talking directly to, that Princess was right to think she was scary, that my diving daughter should be separated from other, more delightful children.

As the oblivious family wades away to a safer, more Addie-less spot, grandma pats Princess's head and once again soothes her with "I know, I know." But east coast grandma doesn't know. She doesn't know a damn thing about the disservice she just did Princess. I don't even form a thought around the disrespect for Addie because Addie had that family written off the minute they accepted the girl's irrational terror of only one kid in that pool.

Addie could not have cared less, but no sooner had she been left to enjoy her space, than I hear a little voice calling her name. Addie plays in the same spot, this time spinning and spinning. The voice comes closer and addresses her, "Addie, man, you really can spin fast. I didn't ever know you liked to do it so much." I had to look closer - kids look different in swim suits and wet hair. Ah, a boy from school. They'd never been in class together despite being in the same grade, but we've seen him out and about before. He always comes to chat with Addie who he says he knows mostly from playing with her at lunch recess. He finally introduced himself to me earlier in the summer at the pool.

Chaz goofs around with Addie and throws a question my way every few minutes "What teacher did she get?" "She is a really good swimmer, right?" Questions that he wanted my take on or that he wasn't sure he'd understand her signed answers. All other questions were directed towards her, most of which she ignored. That didn't bug him a bit.

Somehow he gets her to throw the dive sticks for him to retrieve - that's a new one on me. Never witnessed her share her pool stuff before. Then he throws them for her. On her way down, she's a bit too close and actually clocks him in the face with her foot. When she comes up he laughs and grabs her foot and tells her "Hey, you hit me with this smelly thing." Which got a sharp short belly laugh.

As I was marveling at what a natural way Chaz had with Addie, particularly never having been in class with her, never hearing the "official" messages of inclusion and acceptance - he abruptly left. My shoulders slumped. This is just the kind of kid that more than makes up for that last encounter, that helps Addie truly feel a part of things and makes her want to contribute. The kind of kid who gives me hope. And now he swam away. I wonder what...

Chaz zooms by me in the water, dragging a smaller giggling version of himself by the arm.

"Addie, Addie, I had to go get my little brother! He's going to our school this time! Grant, this is Addie. She is my friend from recess. Addie, Grant is going to be in K4 and I think he'll like it..."

And Grant, being raised in the same household that clearly embraces differences, connections between humans and seeing the value of all people, joined them in their spinning game without a moment's hesitation.

Grant is probably 4 years old. I would estimate grandma to be in her mid 60's.

The cluelessness of Jersey grandma's outlook is being honed and perfected down the generations. Princess is being taught not to see my daughter at all, to fear all that is different from her. And she will find herself ill-equipped for a diverse planet as a result.

And then in other families, the choice be open and to move through with love, curiosity and a welcoming spirit is as reflexive as the smile on Addie's face underwater.

Closed-minded grandma and her legacy: zero, Local boys: >1, final tally after the ripples they create with their natural, genuine, open interest in all kinds of humans can be quantified and qualified countless generations from now, if ever.

Local boys WIN!

Right

2011-08-16T21:10:00.000-07:00

...as in not wrong.

This month's Hopeful Parents post (insideout510 is yours truly, FJC) looks at how selective obliviousness has served me over these past 8 years and continues as a critical part in the engine that keeps me chugging along.

Click on over to read:

Right

Pool Party in her Pocket

2011-08-15T04:59:00.000-07:00

My sweet mermaid,

Your radiant smiling eyes and constant happy song announce the never-ending party inside you. You are a great friend, an encourager, a seer of all things joyful. You welcome the guests in your life as though opening the gate to an 8 year long bash.

Happy birthday, my girl. I could not be more proud of the strong, powerful, beautiful, witty, kind, smart young lady you are. You have touched and changed so many in just these 8 years. Great things lie ahead...so let's get back in the pool!

I love you,
Mom

She Wears her Soul on the Outside

2011-07-26T00:00:00.000-07:00

My sweet Cate -

You don't have to be old to be wise. You taught me that, among thousands of other things. Your example of allowing the good to fill you and overflow is the lesson I cherish and strive for the most.

You have accomplished amazing things in your 12 years so far. I know you will continue to grace many others with your wisdom and joyful presence as you grow. You have a true gift in being able to wring the best out of any given moment - the best for yourself and for those around you.

I love you beyond words.

Mom

I Do Not Know Thirst

2011-07-20T12:38:00.000-07:00

Warm water splatters over the rim of the sink and onto my shirt as I wash dishes from various meals, snacks and drinks. The drops soak in, serving no purpose. Wasted. The TV is loud over the air conditioning as the girls take a break after camp. On the counter there are half empty sport bottles and an old can of la Croix from the night before. Still some in it. Flat and warm. Wasted.

Today is the hottest day of the season so far. My car's outdoor thermometer registered 99 degrees during our extended time in it today. But the ac kept us comfortable, strong, healthy.

I typed up and printed Cate's flyers as the girls enjoyed some cupcakes they made last night. We had everything you needed to make these treats, these non-essential foods.

I scurry around to clean the house in preparation for Cate's birthday slumber party. It's not a big house and it's not in particularly pristine condition, but it's ours. And we have enough to welcome others into it and offer them food, water, shelter from the heat.

Still, I do complain. I do sometimes feel like I pulled the short straw. I do not count blessings every moment of the day. Sometimes I am so focused on other things, I find it difficult to identify even a single one. I know I am at my worst at those times.

But the fact is, I am rich beyond the wildest dreams... of many, too many. Rich beyond the dreams of those without homes, without shelter, without water to drink during this week-long spell of debilitating heat. These are not far-away people, they are my fellow citizens. I can walk to where they "live."

I obsessed this morning as I went for my run about whether I had consumed enough water, whether I was hydrated enough. For a run. For activity I choose to do, one that is optional. I switched from that worry, to wondering whether the water bottles I'd sent with the girls to camp were large enough, cold enough. But Cate has a phone, she could call if they got thirsty. And it would be no hardship to heed that call and bring extra water to the playground.

A friend alerted me an actual, urgent and current call for water - from a day shelter and resource center for homeless people. Some spend the day in the shelter and are left to their own devices at night. Without any water to drink. Water they need just to live, not to run or play or go to camp or do optional, discretionary, recreational things. Water to continue to stand, breathe, move. Water to live.

We dropped off a couple cases today. Cate delivered flyers asking neighbors to consider donating. If they cannot make it to the shelter themselves, we will bring theirs with us on our trip down tomorrow to deliver more.

I have never truly been hungry. I do not know what thirst really feels like. I do not fully grasp the life and death dangers of dehydration for myself or my family. I have never been on the inside of that kind of risk.

But that's where some among us live out every day.

"The good we secure for ourselves is precarious and uncertain until it is secured for all of us and incorporated into our common life." Jane Addams

Present Pacing

2011-07-16T15:53:00.000-07:00

Run over to Hopeful Parents for this month's post by my alter ego, insideout510.

Present Pacing

And don't forget to visit Farmer John's tumblr image blog from time to time:
http://farmerjohncheese.tumblr.com/

To Pry Off a Cap

2011-06-16T10:01:00.000-07:00

Take a click trip with FJC to Hopeful Parents for my June post. It does not feel like summer has begun as it's been neither warm nor restful thus far. But we have hope.

To Pry Off a Cap

Please consider dropping a comment on HP to share your views on citizenship and the value and worth of people with differences in your community.

Pics, Please

2011-06-15T12:28:00.000-07:00

Farmer John Cheese now has a vacation home, too. On Tumblr. I started a photo blog there after realizing how much I had to say with just my phone camera and some filter apps. They started out as toys, but have turned into a constant whisper.

I hope you'll come over to Tumblr to try on my eyeballs for a few minutes. Drop a comment to let me know if you hear the whisper, too.

Farmer John Cheese - Pics,Please

Temporary Impasse

2011-05-16T20:23:00.000-07:00

May is here. We are still toiling. Progress exists, but sometimes its tracks are covered.

Head to Hopeful Parents for my monthly post:

Temporary Impasse

Handle: Reshuffle to the Top

2011-05-06T14:00:00.001-07:00

Leafing this post from September back to the top of the heap. Thinking of mom this weekend, hoping for either a run through of Hop on Pop or a few softshoe moves.

Handle

And I'll throw in a bonus rerun of another gift from my mom:

Mine

Here she is as her real self with my dad on their wedding day. My sister Kathy had this to say about them in this photo:"How beautiful, hopeful, clueless and handsome."

Growth

2011-04-26T15:17:00.000-07:00

It's spring and everything is growing. As are we. Look how much my favorite flowers have grown:

If I did not know these bright smirks like the back of my hand, I'd hardly recognize these young ladies.

Bucket-Fillers Need Not Apply

2011-04-16T19:36:00.001-07:00

For earth week I opted to go green and recycle an article I was asked to write in 2008, but which I don't believe was ever published. Apologies to the publication and its elusive editor, if it did ever did go up.

Updated a tiny bit, head to Hopeful Parents for:

Bucket-Fillers Need Not Apply

Thanks for coming to FJC. See you back here soon.

Neighborhood School

2011-04-11T09:53:00.000-07:00

The chance to drive by during lunch recess. I used to create these "chances" through complicated logistics planning of meetings and errands. But I just don't need the reassurance as often anymore, so it's been a while.

Today was truly by chance. I slow as I recognize the winter coat of a classmate on the playground, realizing my luck. Change of seasons brings a different jacket each day for my girl as we determine which still fits, which has the best fasteners for her, so I lower my scanning eyes for the consistent identifier in April: rain boots with blue whales on them.

I find them among the wood chips and Reeboks. I have long since ceased using an adult, her aide, as my GPS for where Addie is - no longer is Addie always a package deal with a paid support person. Sometimes the aide is with her at recess and sometimes she is at the other end of the playground observing. I see today's aide a few feet and a few friends away from Addie. While that once would have provoked a squeak of concern and desperate plans to remedy it, now the distance elicits a brief smug grin on my face. She doesn't always need the aide at recess. She owns parts of it herself.

As my gaze shifts north of her boot heels, I see her slowly turn. I don't have much time. The crossing guard at the stop sign I am coasting towards is a bit militant and does not cotton to lingering either by motorists or pedestrians. And she'll have the parents of the half day kids to cross back over after drop off, so I know I'll be waved on in exasperation no matter how long I take.

As I arrive at the stop sign, I crane back slightly to see Addie standing at the base of a ladder leading to up to some playground amusement or another. She looks towards the intersection. While I cannot be certain that she saw me, the squinty grin, each moon eye centered in the middle of a diamond shaped opening in the chain linked fence, all lead me to understand that she knows I am there. Her tight smirk and confident eyes tell me what I already know:

I'm here mom, in my element. I am making my own choices, indulging my curiosity, gaining traction in this small community of my class, of my school. Sometimes I make mistakes (like the fall on the way in to school today that resulted in 2 split lips and some stain pre-treatment for the lapel of mom's new jacket), but I get up again. Sometimes I need help and sometimes I don't. Sometimes I'm the helper myself. I am learning new things every day. I am teaching new things every day. Don't worry mom. There is a place for me here.

And there will be a place for me where ever I go from here.

Let's Dance

2011-03-16T04:56:00.000-07:00

It is the 16th. I wave you on to Hopeful Parents for a brief reverie and a bit of unfortunate news for our girl.

Let's Dance

Come back soon for an honest-to-goodness-no-links-to-another-blog-or-to-past-entries blog post. It's been a while.

Opt In

2011-03-02T08:00:00.000-08:00

Today is the day to take the pledge.

RESPECT

Here's my small world-changer on the way to storm the halls of middle school. She's got your back.

(wearing my shirt from 2 years ago)

Link to an old trusty WORD post:

Confessions of an X-Slang-Flinger

You got Addie's back?

To Raise

2011-02-15T18:58:00.000-08:00

Late winter whips itself into a maelstrom of activity on large and small scales - from death to birth, to hellos and goodbyes, to political unrest, to the fruition of many months' work, to a new IEP on the table, to a building sense of trust and community, to a heart-shaped necklace for my baby...from a boy, to the repeated dawning that nothing lasts forever. But the gusting tempest has only so much power, for I doggedly clasp the rope of an old faithful anchor. That anchor is here, in an old post called Fly - recycled and renamed for HP. A photographic clue below before you click over to Hopeful Parents:

To Raise

Sleeplessness

2011-02-07T07:24:00.000-08:00

As I yawn and bask in the very green, very gold victory last night, the February issue of Complex Child e-Magazine has landed. The focus of this issue is sleep... or rather, sleeplessness.

Check out the whole magazine, but click here for a retelling there of an old Addie story from a few years ago.

The Last Nap for a Sleepless Child

May this night bring you a solid chunk of end-to-end slumber.

Let Us Help You

2011-02-06T10:07:00.000-08:00

In case you are ambivalent about today's Super Bowl, maybe Cate and Addie can help you decide who to root for...

Breakfast of (NFC) Champions

Mr. Matthews preparing

L'il Matthews

Trick or Treat

Speaking of treats

Relaxing with Sports Illustrated

Watching Baby have a tantrum

Big middle school fan

Father/daughter Packer Backers

And
There
Is
Your
Dagger! (Cheeseheads will get that)

Addie knows who the best team is. May the best team win.

Place

2011-01-16T15:30:00.000-08:00

I went back to a place where I have not been for a very long time. Come back with me by visiting Hopeful Parents:

Place

We are different people, Addie and I - not the same people who used to go to that place every day.

Abundance

2010-12-22T07:32:00.000-08:00

I knew I had to share these as my holiday wishes to you all. But I had a few false starts on my written intro (which, you predicted correctly, would have been
l--o--n--g). I opt to just paste in one of the love notes I've sent out with this video in the past week. Other notes went to other teachers, some to the kids who surrounded Addie and lent a respectful, warm hand in friendship. This note of thanks went to the gym, art and music teachers who produce the show, but who also were named when I asked afterwards who was accountable for ensuring Addie reached to high expectations for this event.

Each grade celebrated a different holiday tradition from around the world. First grade did Hanukkah. Enjoy the videos and a bit about her dance partner at the end.

Miss S, Mrs. M and Mrs. R -

The Festival of Lights was just spectacular. I loved every second of it (particularly the 4th grade - and as the mother of a 6th grader, I've been to a few of these shindigs before Addie), though I would not be qualified to write a review since I only had eyes for one lady in turquoise and braids during the 1st grade part. I was floored by how well that particular lady did throughout the entire thing, how I never saw another adult standing sentry over her, how her friends encouraged her along and mostly - how she seemed to thoroughly adore participating in the whole thing. Though I had a few clues earlier in the week, I asked Lynn who applied their creativity to help Addie be the best Addie for the show. And she named the 3 of you.

Thank you so much for this gift. I know you all devote energy to the entire beautiful production, but I also know it took a little extra energy to get my blondie to not only engage in it, but love it. I have watched the video probably 40 times since last Friday and I still get a little emotional every time.

I think I understand you'll have to forward this to your home email address to view the video (youtube blocked from school?), but I hope you can watch and feel proud. I hope you can imagine the ripple effect on Addie's traction in the school community and beyond.

Attaching the final run through and the am performance here. They both have their varied surprises in them (like the obviously bored partner-less kid in the striped shirt in the 2nd one - cracks me up), so I send them both.

Happy, peaceful, joyful holidays to you. And thank you for all you do.

Cheers,
Terri and Addie's whole family

Rehearsal:

Morning Performance:

Addie's dear friend and dance partner is none other than Carl. Carl has been mentioned many times here on FJC, most recently here: Signs.
Doubt not - his mother got an immediate and straight-up gushy note of cheers about how he consistently shares his joy of life with his friend Addie. Within Carl's mom's gracious response she shared his explanation on why he was glad to be matched with his old pal for the dance: "she likes a lot of the stuff I like, even though she's a girl."

Wishlist

2010-12-16T08:17:00.001-08:00

It's the 16th of December! Sweet Audrey's 8th birthday and my day to shoo you off to Hopeful Parents to read my post as insideout510.

Was thinking about giving and receiving today, not surprisingly.

Wishlist

Peace and new beginnings to you.

Words of a Sister

2010-12-07T10:05:00.000-08:00

Cate recited 2 original poems for her school talent show last weekend. The video of the performance did not turn out well. I requested a private reading on camera. I will say she was a bit more confident with this reading, knowing the ears she was pouring into.

Each day I am more proud and more inspired by her beautiful heart. Though I'm hardly objective on the matter.

You Break Yourself

2010-11-30T09:23:00.000-08:00

The bullet entered my lower back just as I bent to braid Addie's hair for school this morning. I felt the sudden parting of muscle and nerve, the liquid heat radiate out and down my legs. I twisted just enough to peer at the damage.

Then I could not move. I know I yowled because Cate shuffled downstairs shouting to know what happened, the beginning notes of a cry already in her voice.

In my small twist, I was both relieved and confused to see no blood. The waterfall of heat sluicing down my legs was internal. I felt it pulse downward as I stood motionless. I could not answer Cate's question. I heard only my own quick sighs, lost in translation from their intention as deep cleansing breaths. I tried to turn to her, but could not take a step. Lightening rods of pain laced my back and legs at just preparing the muscles for a step.

Finally I eeked out "I'm ok, but I can't talk right now. Something happened to my back." Problem solver that she is, she said "You go to the doctor today." Just then, her friend arrived to walk to school. I told her I'd be fine and shooed her out the door with my eyes.

When she left, I started to cry. I was stuck. Addie glanced up at me trying to understand what happened, why hair brushing should make me scream and freeze and then cry. But by now she knows that nothing makes me cry like feeling I've lost control.

I somehow sat. And waited. Addie staring at me intermittently, me trying to puzzle out how I'd use these next 15 minutes before I had to get her to school. I budgeted 5 minutes for sitting and planning, 5 minutes for attempting to get shoes and coats and left only 5 minutes for trying to get Addie into her car seat.

A few ibuprofen made this plan sound feasible, but my budget was blown out of the water upon finding out how slowly I'd have to move, how bending down was not really an option at this point in time. So. We were a bit late for school.

After a slow painful drop off, I hobbled home, hoping it would just subside on its own. Cate ordered me to see the doctor, but I was reluctant to do so. Back a few years when I hurt my back leaning over Addie's bath, a phone call to the doctor was succeeded by a frustrating few days of guessing, prescriptions and referrals. The ultimate "solution" was that I was to see a physical therapist 2x per week. At that point in time, our threshold of therapy appointments was maxed out with Addie's PT, OT, SLP and student speech clinic. So I did nothing but wait for it to go away. It did.

After internal deliberation I decided to continue with my morning plans at least, to go meet my Tuesday morning ladies. We knit. The rec department requires that we register for this "class," but in recent history, I was the only one enrolled that wasn't (and isn't) already an accomplished knitter. The ladies have taught me a lot about a lot, including knitting. Though I have not sought concrete proof of this, I do believe I am the youngest one in there by a few good years.

I really relish being a part of (or just witnessing)the cadence and content of non-competitive conversation between women who are living intentional lives. None of them moan about their lot, though there is plenty of heartache in the room. None of them are waiting for prince charming, the ultimate career, a cure, the therapist with the answers, the winning lottery ticket... They are all taking what they have and making something of it: whether it's yarn scraps and dropped stitches, or sick husbands and children with addictions. They come to share who they are, to give what they've become to the rest of us, to offer, to bridge a gap, to listen, to inform, to help.

And so I went to see the ladies. I had a knitting question to ask - I'd finished a project I was not particularly thrilled about. I knew they'd help me figure out what went wrong and have ideas for correction. But of course, before I could ask my real question, I was handed the card of a chiropractor that I was to call immediately and "tell him Pat sent you, he'll get you in right away." Along with the card, came the story of how Pat first started seeing him many years ago for a similar issue and how she would not miss a month now. The story was told in calm quiet tones, certain that I would also get the happily ever after ending if I just called the number.

And the ladies solved my knitting issue with the unanimous suggestion that I must "block" the project (wet it and reshape, possibly pin it until it dries) to get rid of the extra stretch and rolling. I can count on the ladies.

I heaved myself on to my next endeavor. My husband had the brilliant idea that I go hit the whirlpool at the gym after knitting to see if that would help. I never would have thought of that. Partially because I was not real clear on how I'd manage to get my suit on, but I did. Eventually.

Our gym is the Jewish Community Center. We have been members since before we were married. Cate went to daycare there as a baby and toddler. Both girls took swim lessons there. The outdoor pool is where we still spend many, many summer hours. Michael does any necessary indoor training for his marathons there, and during an energized week, I can be spotted in the fitness center at 6am two or three mornings (energized weeks are few and far between these days). While we are not Jewish, the JCC has been integral to all 4 of us for many years.

The weekday chasm was evident upon walking into the pool area. To my left was the kiddie pool, filled with toddlers and preschoolers, splashing and shouting. At the rim sat the young mothers. I imagined them discussing natural and organic lunch options for the kids, which schools they will attend in fall or the fall after, who is taking ballet class together. And then to my right was the lap pool, a few older men, but mostly women in their 60's, 70's and beyond. A water aerobics class just let out, so there were small clumps of women chatting at the edge of the pool.

I turned to my right and had the whirlpool to myself for a few minutes. Then a water aerobics pair sauntered in. One got in swiftly while the other just dangled her feet in from the side. She explained to the first that her high blood pressure prevented her from hopping all the way in, but that her plantar fasciitis compelled her to indulge her feet for a short spell.

The ladies discussed ailments for a few exchanges when the one with high blood pressure cheerily summed up "If it weren't for all these aches and pains, it would be a beautiful world."

To which the other equally cheerfully retorted "Oh, it is a beautiful world. But boy, you just don't realize what's coming when you're young."

For the 2nd time in a few hours, I felt another bullet. Shot with the understanding that at age 42, having just hobbled from knitting class with a bad back, I was no longer the clueless young. I do realize what's coming. Despite still changing diapers and watching Nick Jr, I had more in common with this older set of pool visitors than with the young moms on the other side. I cannot take the movement of my body for granted anymore. I am not young.

But I am not yet really old. Where am I on the continuum, where do I fit? It's clear I do not fit at the pool in the middle of the day as I believe I represented those in their 40's and 50's all with my own solitary early middle aged self.

As I mulled this over in the whirlpool, shifting to keep the strong jets on my lower back, the beautiful world ladies discussed lunch plans upon their exit. To my surprise, I saw there had been another woman in the hot tub all along. I did not see her enter after the water aerobics class ended. I glanced in her corner of the whirlpool to find her unabashedly watching me.

"You moof not comfortable." She speaks with sustained eye contact and small spaces between each word, the spaces and Russian accent setting the declarations up as poignant and sage. Not to be questioned. Not to be brushed off.

I explain that I am moving gingerly because I hurt my back and was in the whirlpool to find relief. She politely inquires how I hurt it. I tell her that while I'm not entirely certain, lifting a 50lb child into and out of her car seat multiple times per day probably doesn't help. Bending over to help her with certain tasks, bearing her weight on the stairs, manhandling her during defiant moments all probably contribute. Light in tone to ward off the pity that sometimes comes with the revelation that I am the mother of a child with a disability, I glibly summarize with "She is heavy. I am old."

My hot tub mate maintains eye contact, but cracks no smile. She waits a moment - I am not certain if she gathers thoughts during this pause or the words to express them.

"She vill get more heffy. You vill get more oldt."

I laugh, but quickly realize she was not trying to amuse me.

"You find someone young. Someone help you."

She waits for my confirmation that I will take that simple step, just find someone younger than me to help care for my daughter on a daily basis. I want to laugh again, but I realize she intends to give, to help. She did not have to speak to me, to inquire. She, like my knitting ladies, wants to bridge a gap for me. My gift back can be to respectfully accept it. I tell her I will find someone, I will try, but she does not look convinced.

"You haff no ozzer choice. You break yourself."

I don't want to laugh but cry. Yes. I did break myself. It's true. I can't expect to always be able to do it all myself. The painful dawning shows and the lines between my eyebrows can be read like the Cyrillic alphabet: how.

She slowly uncoils her longest strand of words yet.

"You ask. De peepul say yes, alvays sayingk yes. You vill see."

Two

2010-11-28T11:48:00.000-08:00

Two, alone

Exclusively so

Though face to face, devoted avoidance

Fears dismissed, mutual

One disregarding the other, taking pains not to inquire

The other feeling the sting and leaving it lie

Aggressive in the leaving

One claims ownership of pain and will not identify it elsewhere

The other’s aches compounded by

Being made to eat them

The other contends the first is incapable of change

Finished, flaws glazed and final

Irrevocable

Neither ailment nor loss will move one to the other

Seated at either end of the table

Thin wisps of history and obligation between them

Not seeing, not hearing

Stubbornly separate

Folding farther inward

Contracting

The Bounced Q

2010-11-16T04:29:00.000-08:00

Get thee to Hopeful Parents for my monthly post:

The Bounced Q

In the spirit of the Thanksgiving holiday, I'll thank you for coming back, taking the time to read and sometimes comment. Writing FJC is certainly satisfying in and of itself, but it's the reader that makes blogging fun.

Peace to you.

(photo by John B, grins by good times with friends)

Signs

2010-11-02T06:38:00.001-07:00

His small elfin voice is lobbed through the playground chain link fence to where Addie and I rush to line up. He tells us about the pattern on his hat and on his shirt. Yeesh! That was the math homework - Addie was supposed to dress in patterns and be able to explain the pattern to her friends. I look down. Whew. She has a plaid shirt on, at least. But I didn't program anything in...

My lament is loud as I literally smack my forehead for my audience of 2 first graders: "I forgot Addie's talker!" (Her talker is what we call her communication device, a DynaVox V.)

In the morning craze, compounded by the first defrosting of the car of the season, I had forgotten to put her device in the car and didn't realize it until we were already lining up just before the bell.

I briefly apologize to Addie and assure her that as soon as she goes in, I'll swing right back home to get the talker and bring it to her classroom. I am still figuratively kicking myself - it's the first time I've ever forgotten it in 3 years of use at school.

The little elfin voice continues through the fence. "Don't worry, Addie's mom. Addie can understand ALL of our English and then she can just talk in signguage [a term Carl coined last year to refer to sign language - it just works somehow]. Because you know she can speak in signguage and in ah, her talker. She will be ok until you can bring it. You don't have to worry."

The bell rings as I think about what an honest and genuine friend this young fellow has been since he and Addie met last year in Kindergarten. Carl gives her all the credit in the world for being another goofy, fun-loving, endless-potential kid, just like himself.

Somehow he ends up in line in front of Addie. He is telling the fellows in front of him "Addie's mom forgot her talker!" Small outrage ripples forward. He lays out the plan for Addie's other classmates. "So, we'll all do signguage until her mom can bring it. If you don't know her sign, just ask me."

I scurry back home knowing that Carl, a 6 year old boy, will bridge this lapse for me until I can deliver for Addie.

As I shuffle back to the classroom fumbling with the device to have it powered up by the time I place it on Addie's desk, I see her special ed teacher in the hall, Mrs. M. Addie has an aide or the spec ed teacher with her at all times during her day in a regular 1st grade classroom. A grinning Mrs. M meets me and tells me that I need to bring it in myself - and take the blame - because Addie's been "yelling" at her for the 10 minutes since she settled into the classroom for the opening routine. Mrs. M demonstrates the very animated and adamant way Addie signed for her talker, complete with those focused wide eyes I know so well, locked on who she deemed the responsible party. Mrs. M added that Addie even got up to go look near the outlet where it sometimes charges. She was plain angry. As she should have been.

I slipped into the room and put the device in front of her on her desk stealthily. Addie reached for it with both arms and scooted it closer in a territorial way. She navigated to her classroom pages immediately. I crouched down and asked her to look at me. "I'm sorry, babe. I just forgot it," I signed and spoke. She leaned forward slightly to offer me her straight lips in a very brief and light kiss. As she leaned back into position facing her talker, the back of her right hand brushed my shoulder firmly to let me know that she was no longer angry, but that I need to go now. I did as I was told. Her classroom teacher looked on and offered a knowing smile.

Mrs. M and I chatted a bit just outside the door. I thought I might be keeping her from Addie in the classroom, so I began to back away. She stepped away, as well. She must have seen my flash of confusion. She explained.

"Oh, I have nothing to do at opening so I usually hang out in the hall working on other stuff. Addie doesn't need anyone until Reading and Language Arts starts. But opening? Your girl can do that on her own."

The energy I (willingly) spend convincing people of what Addie's abilities are, what she can do, is immeasurable. Today, Carl and Mrs. M have taken my work from me. Today a child and an adult assured me that Addie is seen clearly, that she has consorts outside her family who will take her lead to ensure that others see and hear her clearly.

Not only do I not have to do it all - I don't get to. It's between Addie and the world she lives in. And I'm good with that.

Run the Risk

2010-10-26T11:22:00.000-07:00

The regular ed teacher who isn't trained in curriculum modifications does not desire to see your child fail.

The special ed teacher who suggests your child be pulled out for math class doesn't do it because he believes your child has no business attempting math.

The speech and language pathologist who resists more sophisticated assistive technology for communication doesn't do so because she thinks your child has nothing to say.

The occupational therapist doesn't make zipping a zipper a greater priority for your child than learning to write her name because he wants to see your child left in the dust.

The physical therapist who advises the IEP team against inclusion in the regular PE class doesn't do so because she bears ill will towards your child.

The administrator who forgets to require that all kids, including those in special ed, attend the anti-bullying assembly doesn't do it because he believes your child should go ahead and accept bullying as a fact of life.

The kids who linger and stare at your child in the hall or on the street do not do so because they are inherently mean children that wish the worst on your sweet child.

The other parents who look away when you and your child roll up to the playground and begin the wheelchair transfer onto the swing don't avert their eyes because they think your child doesn't belong at the park.

All of these are the result pressure, lack of confidence, unanswered questions and private struggles.

These people need your help. Their view is obstructed by red tape, scant resources, confusion and sometimes pain - they cannot see just how limitless your child's potential is, how complex her personality is, how dynamic his sense of humor is, how great her future may be. In gaining that understanding, they take your lead. A great number of them are just waiting for you to guide them around their own blockage so they can see your child clearly.

In accepting this leadership role, you run the risk of knowing what people's true intentions are, of understanding where their confusion and questions lie and having to address them, of acknowledging what pressures they are up against. You run the risk of taking partial accountability for helping them get past some of those things enough to give your kid a fighting chance. And you won't always come out on top.

But run that risk anyway.

Those people are worth it and the future of your child, of my child, of all children, depends upon it.

Right On Time

2010-10-16T14:29:00.000-07:00

One more click to get there on Hopeful Parents:

Right On Time

C'mon, don't be shy. Drop a comment on Hopeful Parents.

Compelled to Post a 3rd Time

2010-10-08T10:44:00.000-07:00

Another rerun - and I've already reposted this once. Let me explain. I got this form in the mail again today, one year after this was originally posted. I do not think/feel one whit differently about it than I did 12 months ago.

******************************************************************
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.
_________________________________________________________________________________

Overheard: 2nd Installment

2010-10-06T14:39:00.000-07:00

Passing by the playground as Addie and I started our walk/roll home today, we became active witnesses to the following:

Smiling excited blond first grader runs to the chain link fence and presses her grin into it, shouting "Addieeeeeeeee!" Her hand lifts in a manic wave that does not cease as she awaits Addie's response.

A less excited first grader who followed to the fence looks up and asks her waving blond playmate, "Why would you even like her?"

Happy girl keeps smiling and waving at Addie "Because she's a friend."

After Addie responds with a wave, the smiling girl ceases her smile, stops waving and guilelessly turns to her questioner, "Why would I even like you?"

Edit. Delete.

2010-10-05T15:00:00.000-07:00

EDIT
Calendar entry: Picture Retake Day
DELETE
Are you sure you want to delete the calendar entry 'Picture Retake Day'?

Yes. I'm sure.

Interview with Support for Special Needs

2010-09-23T10:38:00.000-07:00

Once a month I snicker as I send readers in a tail-chasing circle - from here to Hopeful Parents, from Hopeful Parents back here. Childish fun as I make-believe readers are stuck in a cycle of never-ending links. I know that doesn't actually happen and that you are all way too clever for that, but the thought of cartoon characters in one such rut brings me some small mirth.

And I get to do it another time this month! Please go check out my interview at Support for Special Needs. This week they are highlighting the founder and 4 writers from Hopeful Parents.

Choosing Hope: Terri Hart-Ellis

From there... you can certainly click a link to come back here. Snicker, snicker. Drop a comment either place to tell me how annoying that is.

Another one? Already?

2010-09-20T19:44:00.000-07:00

Guess what day tomorrow is...

Here is a hint:

Mantel

We shall see...

Butterfly Effect

2010-09-15T19:03:00.001-07:00

If you have come here, you are a butterfly.

Read about your effect here at Hopeful Parents:

Butterfly Effect

Drop a brief comment on HP to recognize one of your own butterflies.

The Last 20

2010-09-11T15:14:00.000-07:00

Through wet streets and a chilly breeze, this morning Michael ran his last double digit training run (20 miles)before the October 3rd Lakefront Marathon. This will be his 4th time as a marathon finisher, his 3rd time running to benefit the Special Friends Foundation. As of right now, he plans to hang up his shoes for the 2011 marathon to reclaim some time to focus on other things.

The Special Friends Foundation is important to our family and the families of so many impacted by Rubinstein-Taybi Syndrome. When we first found out about Addie's diagnosis, Special Friends was right there with information, connections and support. I coordinate an annual reunion in the Midwest for RTS families, which is largely funded by Special Friends. These reunions have been critical to more than 25 participating families for 11 years.

This past summer we also got the chance to meet and learn alongside a larger group of RTS families at the 2010 Conference in Cincinnati. Hundreds of people attending a day and a half's worth of sessions designed to help us support our RTS kids (and their siblings)as they navigate through and pick their path in life. Special Friends played a large role in making this conference possible.

We are grateful for the organization, for the connections we've been able to make as a result. I am also thankful that Michael has devoted himself to using his endurance and strength to give back a bit. At this moment, we are just a few hundred bucks shy of having raised $20,000 for Special Friends over the past 3 years. We feel confident we'll hit the big 20 in these last few weeks before the run.

This would be impossible if it weren't for our friends and family, for the generosity of others, people who know people, people who support people, people with hope. It would not be possible without you.

Thank you, my friends and family. For acting on hope and on faith.

Click here to see Michael's page:
firstgiving - 26forRTS

(Addie offers her congratulations and a hug at home on the night of the 2009 marathon)

Handle

2010-09-01T17:17:00.000-07:00

Sometimes I won the spot under the arm. Some days I was relegated to the other side of one brother or another. Front row seat to Hop on Pop - under that right reading arm. I would hunker down warmly, knowing that this chance would not come again soon for with 9 siblings, my turn didn't come often. We knew all these books by heart already. We could read them ourselves, recite them without glancing at the page even. So it was not the book that held tightly. Her hands were what gripped me.

Unlike most of her children who got their father's stout hands, my mother had long and lean fingers. She kept her fingernails short and neatly filed. Her dry and always room temperature skin taut over straight and limber knuckles and palms. Her pointed index finger made a soothing white noise as it scrolled under each word without pause, without hesitation. It matched her voice precisely - there was something equally singsong about the movement. The books were old, having been read to 7 older siblings before becoming a focus for my younger brothers and I. They smelled old. They smelled like library books, stored primly - though that could not be farther from the truth. These Dr. Seuss/Ted Geisel books were open and bent daily, along with the multi-volume World Book Encyclopedias from the same shelf. My mother's finger and her hand whisking across the page would release the calming scent in brief waves.

My small thumb on hers did not slow the cadence of her voice or reading hand. I explored lightly enough not to disturb. I rolled my thumbprint over the horizontal ripples on her broad nails going up and then side to side, lightly ticking the vertical ridges with my thumbnail. The crescent moons of her nails shone white against the remaining pink that made up the near perfect rectangle.

Those nails, the joints, the linen skin were a sign of strength, capability and resilience to me, though I did not know it then. Those hands fed, clothed and cared for a family of 12, they brushed our hair, tied our shoes, and waved in time to impromptu kitchen tap dance solos just to make us smile. In 1978, 32 years ago on this very day, her hands began to care for a family of 11 - her partner, her love, her husband bowed in finality to pancreatic cancer after a year-long skirmish. I was not cognizant of all this then as I watched my mother's hands at the time. But I know it now as I look at my own hands and how I use them. My nails are short. I do not buff the ridges out nor do I polish them. I can do nothing about the stubbiness of my fingers except imagine them otherwise. I watch my own pointer as I underline the words in Hop on Pop for my daughters. I listen to the rhythm of my reading voice. There are things I have hoped genetics would spare me. There are things that I've inherited from my mother. And there are other things that I have outright taken from her, hoping to call my own. Hands that imbue a child's faith that such hands will be present and strong forever are among such things I have tried to wrestle from her and claim as my own.

Today I spent 4 hours in a waiting room with my mother as she moved in and out, following the protocol for a medical study she is taking part in. She gets monthly shots in the eye to stave off the vision-ravaging impact of Macular Degeneration.

My mother bears no silence, but fills all air with small vignettes from years ago or from this morning: stories about the grocery store her family "dealt at" when she was a child, stories about old friends she and my dad used to spend time with - people not heard from in over 30 years, stories about which recycling bin she needed to take out on Tuesday, about what the person in line in front of her at the bank did, about what she heard on the radio. Even as I understood and reminded myself today that she is asking for me to bear witness, for me to heed her, to give back even a small piece of the regal attention she used to hold when we all depended upon her, I still prayed for patience and guidance. Though patience, resilience and creative witness-bearing techniques are part of my life as a parent in general, but even more so as a parent of a child with a disability, I feel ill equipped to begin the climb to help support my mother while simultaneously bobbing and weaving in time to her slipping, sliding scale of what helps her hold on to her dignity. I can advocate for my child with different abilities. But I will have to learn how to help my siblings care for my mother as her faculties and health begin to take incremental leave from her 79 year old body.

As we had lunch at my dining room table after her appointment today, she told me a story I have known by heart in her words for at least 35 years, she gestured the same gestures that have always accompanied this story. During an adamant point, her index finger - the one that so precisely skimmed under the words in a book - came into focus. The skin was loose at the tip, the nail longer than I remember it, unshaped by a file. Knobs and swelling had taken over the last joint, the crook of which led the eye to take another, unintended direction. Her hands shook almost imperceptibly. I tried to envision that finger moving across the page with the grace and agility I once depended upon.

Time is diligent and devoted to it's enterprise. It will not yield. Even to a mother's hands.

Something to THINK About

2010-08-20T06:44:00.000-07:00

Regardless of your child's age, abilities, current inclinations - don't rule it out. It's happening right now. Post secondary educational options are there for kids with differences. We all go to college to increase our likelihood of finding meaningful and rewarding work. Colleges are including ALL kids in their high expectations.

Raise yours. See what happens.

I Am A Parent

2010-08-16T08:44:00.000-07:00

... of the Hopeful kind. Snapping over at Hopeful Parents today. Come read me at:

Snap

There are now 2 writers per day at HP, so more to enjoy. Drop a comment when you visit.

You Make Yourself Clear

2010-08-15T00:00:00.000-07:00

My sweet, you made clear that my job and the job of all other caregivers in your life is to safeguard your freedom, to run a pipe cleaner through sticky avenues so that you can continue to be exactly who you are. We are not here to change you, to add to you, to put external things in, to cure you, to mitigate differences. We are here to clear a path for your you-ness and to help others recognize the value of such you-ness.

You are an example for any and all of us who concern ourselves with judgement in the minds of others - which is truly all of us. Be who you are, do what you love, be confident in your own cleverness. That's what I call free.

Happy 7th birthday, my true and free Addison. I do not know how I came to deserve you, I know only that every single day I feel like I got away with something.

Photo and video editing at www.OneTrueMedia.com

Staring FreeGirl Addie, Pop, Cate
Cameo appearances by:
Megan, Maddie, Bowling Alley, Daisy Troop 32XX, the Atlantic Ocean, Rosie, Mrs. Opelt's Class, Caden, Natalie, Inclusive Playground Campers, Audrey, Waterpark, Madeline, Carl, discarded lampshade, hotel entertainment dude, shadow, Rossi, Grace, hula hoop, Adelia, Hope, Addie's drum kit and rockin' sticks o' rhythm

As I Was Told

2010-08-03T06:42:00.000-07:00

Mom.
Shoes.
Now.
Go.
Grandma.
Cat.
Again.

Addie's longest message communicated to date, signed to me yesterday, swiftly and clearly with 100% faith that her audience would understand and comply.

What could I do?

I got her shoes and took her to see Grandma's cat again.

I did as I was told.

It All Started with You

2010-07-26T00:00:00.000-07:00

You made me a mother. You turned "Michael" into "Dad." You led us through the boot camp of parenthood and tenderized us for the job. You make clear to us that there is beauty, hope and promise at every turn, that it is up to each of us to pick it out and savor it, to let other things fall away. I could not get through a day without you - an effervescent sprite sent to sprinkle her smiles and joy dust on everyone while reminding her mother what matters and what does not.

Sweet Catriona, I don't think I'll ever be able to find words for what you mean to me, what a remarkable young lady you choose to be.

But I'll keep trying.

Happy 11th birthday, my love. The way I see it, the beauty around you begins with you.

Make an on-line slideshow at www.OneTrueMedia.com

Kids in the Summer. Nothing New Here.

2010-07-19T10:14:00.000-07:00

All photos taken by Cate, 11 yrs old. Her assignment: snap a good sample of what happens at Inclusive Playground Camp. These are just a few...

FJC: So, Cate. Thanks for taking the job for this one day as observer. You were my eyes today. What does happen at Inclusive Playground Camp?

Cate: Uh. Playing, running, crafts, games like Mr. Fox, jokes. I don't have any pictures of the craft time because I wanted to do that, too. They let me. We made this cool sand art where part of it is sticky and you -

FJC,interrupting: Child, do you remember the question?

Cate: Ah, yeah. What happens at Inclusive Playground? [shrug] Same thing that always happens at Playground Camp. Just more kids.

Captured, Coveted, Captured Once Again

2010-07-16T17:24:00.000-07:00

After a primitive few days without cable or internet... I'm back. Not here, though. At Hopeful Parents.

Click below to see what we've been busy with:

Captured, Coveted, Captured Once Again

A clue on a tiny stained hand...

(fill in the blank)-proofing

2010-06-23T19:08:00.000-07:00

Locks, latches, barricades, guards. I remember glancing longingly at the Safety First kit given to us at one of the baby showers. I so looked forward to the days when my tiny, 100% dependent baby would venture a bit out on her own - her sense of curiosity outgrowing her sense of self-preservation - certain that between my watchful eye and the trusty plastic doodads I'd installed, that my sweet growing girl would be safe while the world taught her about judgement and cautiousness.

Now I have no baby. I have had no shower wherein other mothers who have lived through this gleamed and twinkled as they gifted me the equipment I'd need to keep my precocious child from harm's way. The latches I put up now are not installed with certainty that the one I guard from peril will soon absorb my lessons and be able to keep herself unharmed.

No. My husband buys the bolts and latches and new doorknobs from the hardware store. They don't come home in pretty paper and bows or with cards of congratulations and best wishes - instead they come in beige shopping bags, wearily tossed on the counter. We don't open and assemble them together, excitedly prolonging a freshly reached or anticipated milestone. Rather, I move myself to another part of the house to dull the heartache while my husband drills and hooks and hammers alone.

When he is done, I pass by to assess the effectiveness. Yes, that'll work. She won't be able to reach that. We don't celebrate, we don't grin or congratulate ourselves. We both know the frustration she'll feel when something she worked so hard to be able to open has now been changed up on her, that she has lost a freedom she just obtained. We dread latching and unlatching many times a day, little needling reminders that the safety propaganda didn't take hold, that little liberties are being removed one by one, instead.

She broke through our very old cedar fence in the back of our yard. I found her on the other side of the block. When we replace the fence, it will not be an aesthetic or resale value investment, we won't sort through quaint cuts and consider different styles. We will pick the basic one for the utilitarian function of keeping our daughter whole.

Today a hook and eye went up on the basement door. It's less than a foot away from the one we put up a few months ago on the back screen door. Seeing the two of them so close together kicks up a cloud of grim conjecture: heavy, glinting bolts on every last hinged thing in our home.

Back when we sprinkled the house with baby proofing gear like so many holiday baubles, we knew it was temporary.

We know no such thing now.

In Defense of Hope

2010-06-15T18:22:00.000-07:00

Patronized one too many times, discounted one too many times, shoved towards a vat of idle bitterness one too many times...

I do not accept, I do not stand by, I do not jump into that vile lake of "I give up."

Come read me at Hopeful Parents.

In Defense of Hope (and of Faith in Humankind)

Feel free to post a comment on HP - would love to hear from you there... or here!

Your Kid Gonna Make Toast or Make a Difference?

2010-05-19T07:21:00.000-07:00

Every single exit from her regular classroom is taken very seriously for my daughter, Addie. The reasons behind the exit, the gains projected, the risk of missing what's happening in her absence are all taken into consideration. Most often, we decline to excuse her from what she learns with her peers in favor of something else, even Friday swim with the spec ed class. She does join 4 of her K5 classmates to leave the room for reading support during the week - a support accessed by all kids when needed, not specific to spec ed students, not "special" at all. I have granted permission for Addie to join the special ed class on a field trip to the zoo and to go out to lunch, both intended for diversion, not for practical, sub-academic learning. Other than that, through 2 years of stating our case and demonstrating why it is critical for Addie, she spends her days in K5, learning what K5 kids learn.

I could not ever bring myself to sign the permission slip that Lisa Pugh found in her daughter's backpack. Indeed, I will have a harder time, as Addie grows, and the term "life skills" is tossed in more frequently to explain why she isn't in Math, why she is learning to follow a recipe instead of how to write a persuasive composition, why we will spend 3 years on confirming that she knows every last sight word before she can graduate on to actual decoding... I understand K5 is relatively effortless when it comes to inclusion and general curriculum modifications. But that tells me we all need to step it up and get creative, not "teach" kids how to run errands or make toast in place of general curriculum. Or worse still, show her that changing oil is something she might aspire to, if she starts studying the process at age 10...

Please read Lisa's brilliant post and share it far and wide. Regardless of policy and legislation, if expectations are in the wrong place, we lose. Lisa doesn't just rant about that, she offers the stats behind it and throws down the gauntlet to us all.

Life Skills in a Jiffy, by Lisa Pugh

I have a...

2010-05-16T20:09:00.000-07:00

...child with Standard Needs. Two of them, in fact.

Check out today's post at Hopeful Parents.

Standard Needs

Not Needed

2010-05-07T10:43:00.000-07:00

I post an uncharacteristically brief one today to neutralize a bit of nervous energy.

A year ago I wrote about getting the shaft for Mother's Day. That very event is taking place today for the new crop of junior kindergarten mothers. I wish for them a different experience than mine. There were too many practical expectations of me that day, so I got cheated out of what was supposed to be sepia-toned mental flip book of mom-honor and cuteness. Instead, my memories are red ones, memories of sweat, frustration and separation.

But today I write about getting an unexpected and absolutely thrilling gift from people I had never seen until a few months ago. I sought nothing from these people, and yet they have offered a string of varied sized pearls, one by one, since we met. We get a big one tomorrow.

Addie will go on a play date. A drop off play date. My presence is not expected. I am not needed. I would serve no purpose. I am not wanted.

There are many times I feel redundant with my 5th grader. Sometimes the feeling is justified and good, other times not so much. But the times I've felt superfluous when Addie's out in the world are rare indeed. I am a collector and hoarder of such times.

I know Addie's pal's dad is a reader here on FJC. I hope that he and his family understand that taking their daughter's lead in naturally and guilelessly reaching out to pluck Addie to be a part of their lives is precious and hopeful to me. Even her brother crossed his fingers when coming to pick his sister up from a play date at our house a few months ago, wishing that it went well so there would be a "next time" and they could host at their house. I hope they all understand that they are propping open a door that had been closed for nearly 7 years.

Addie and Megan won't see it that way - they'll just consider it a couple of friends hanging out. But I see it as a great vote of confidence for what is possible... maybe even probable, as we gradually turn the world over to Megan, Addie and all the other seedlings.

Happy Mother's Day, mother-readers. May you know the feeling of being completely and utterly unnecessary, even if just briefly.

Rerun: Jarring Mail

2010-04-28T11:30:00.000-07:00

The following post from October 9, 2009 is rebroadcast at reader request:
*************************************************************************

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.
_________________________________________________________________________________

Question and Answer

2010-04-16T08:55:00.001-07:00

It's the 16th so I must ask you to click once more over to Hopeful Parents to read today's post.

See what the question is, see what the answer is here:

Question and Answer

Continuing

2010-03-28T21:56:00.000-07:00

Dads are the ultimate paradox for me - dependable, sturdy, constant. And yet the dads of my childhood, including my own, did not last long. I met only one of my grandfathers ever and my own dad died when I was 10 years old - he was just 4 years older than I am now. Uncles and dads of friends seemed to disappear at regular intervals in my formative years. My father-in-law died before the "in-law" part could be made official.

My best friend's dad died tonight. He was in his 80's, so not so very temporary as many. But still, my childhood conviction that dads just can't stay as long as moms is reinforced.

I remember leaning on my father's shoulder at church, the feeling of the stalwart tweed suit jacket material on my cheek. It felt forever, dependable. But it wasn't long before I had to switch that shoulder out with my mom's narrower shoulder - that is, when it was my turn among the 10 of us.

On Wednesday Addison had an EEG. The neurologist is a very soft spoken man with a substantial accent. I leaned in and put all I had into receiving what he had to say. I listened, I let go of my cautious skepticism and I believed. I trusted. He is a slightly stout and bent man with olive skin, a conspicuous wedge nose, salt and pepper mustache, deep set eyes and thick eyebrows framed by dark rimmed glasses. His white doctor's coat could easily be swapped for a chemist's lab coat. The remarkable resemblance to my father (a chemist) in his 40's is disorienting at first and then calming. The neurologist did not need to convince. The benefit of the doubt was his for the taking. A frightening experience, but I found peace enough to transfer some to my sweet girl.

Earlier today I rushed from the coffee shop to my car, a hundred things on my mind that needed doing before the week's marathon of meetings and prep. But I was slowed to a near halt as I caught a certain strain in the air. A homey old fashioned smell, dark and relaxed - a very Sunday smell. Apple pipe tobacco. I honed in on the older man it came from. He puffed and looked back somewhat defensively. I thought, no, not dad. Of course not. But I gave the man part credit anyway - credit for making a pipe and tobacco choice that put my dad in front of me again for a moment. I don't think the grateful half smile I offered was expected.

I have been without my father for 32 years. But I am still being raised by him.

As a child, I spent as much time at my best friend's house as I did at my own, just 3 doors down. She sat at the table with my huge family and I sat at the table with her huge family for countless dinners. My many siblings teased her as if she were another of us and hers cajoled me in the same way. After my father died, her father offered to walk me down the aisle at my future wedding.

My parenting decisions, my thinking as a human in general, are drawn from 2 houses, from 2 sets of guardians - my own parents, and my best friend's parents. And thus it has been for many years, despite the lack of daily contact with my friend's family for the past 20+ years. I spend a lot of time in their house still, in my mind. It is a place of open comfort and acceptance, of humor, of unflappable loyalty.

And so, for me, it will continue. I will always look for and see Larry in others. I will be brought back into the sweet green enclave of their yard by the smell of dill and blacktop, into their buzzing home at the mere mention of popcorn, Golden Girls, the Horicon Horns. When I pass a house sporting a lawn sign, - though it bears other words, my mind's eye reads Larry's name, Clerk of Courts. When things get cluttered and complicated, when I need to get back down to essentials, I flash back to the countless times our tiny girl knees bent in a crouch inside my friend's parents' closet, sifting through a box of mementos, turning each over, guessing at meaning - these vestiges that signified the highlights for her parents and left the inconsequential things to fall away outside of the box.

I am made up of my childhood. So I am made up partly of Larry and the rest of his family. So are my children and so will theirs be. To use a word we never spared as children: infinity.

His family and friends ache with loss. Though she is nearly 4,000 miles away right now, I hope my friend can feel me sitting nudged right up next to her side, like we used to sit as little girls.

There is no end, Larry - just a constant, strong, wide wake behind you.

Reminded

2010-03-25T08:43:00.000-07:00

I am reminded by the birthday slideshows I made last summer for my ladies. Reminded of my girls' power, their joy and their resilience.
And reminded of my own.

Make video montages at www.OneTrueMedia.com

Make an on-line slideshow at www.OneTrueMedia.com

easy to forget

2010-03-22T10:57:00.000-07:00

When you absently yank tissue from the box and brace yourself for the next deep sob; when your child, your happy, confident big girl sits on your lap, truly unable to stop crying, it's easy to forget everything else. When you wonder how and why she mourns so actively someone who died years before she was born; when you don't know how to help her through this grief that washes over her every few years with such debilitating rawness, you don't think about other things. When she asks questions about him and you answer lightly, believing you've given her a little peace with funny stories, only to hear the next day from her teacher that she broke down over the very trivia you gave her about the grandfather she never met, you forget the rest. When you desperately want her signature beam back on her face, but see that even when the tears stop, all that's left are knit and mulling brows, and you feel powerless to change it, you just forget everything else.

When you get a note from your kindergartner's teachers about "episodes" of shaking that seem beyond her control, you can read only those words and no others. When your small girl seizes; when her eyes are absent and her body rigid, you are right there with her and nowhere else. When you dial the number to a neurologist for the first time, no other numbers exist at that moment, no other voice but the one at the other end of the line. When you schedule the first test, you don't think about what comes after it.

When you have friends aching in bereavement, all other friends recede. When worry, fear and loss are prevalent, you forget about peace and progress. It's easy to forget.

And then you sit on the swing next to your girl as she flips her feet up and lets out a yelp of unabashed satisfaction. You look at the curve of her upside down chin and consider it the sweetest and softest lilt of a line ever. You see her legs expertly wrap around the swing chains and deeply appreciate the little body twist she employs to keep herself swinging. And you forget about seizures and neurologists for a while.

The volume and tone of the throaty and spontaneous laugh reveal how little control your big girl has over her guffaw. She stabs a dirty white foot cover at you as you reach to yank your own off in battle. You roll on the floor, bones bumping others and the carpet, both laughing and jabbing, yelling "sock attack!" You raise your sock-weapon and offer an affectionate, silly, defensive block, prolonging the beam trained on you. And you forget the sobs and the break down at school.

It's easy to forget.

Angry Post

2010-03-18T09:01:00.001-07:00

There is a kid that Addie knows and seems to like. Adults have told me that this other child is very interested and engaged with Addie, that she seeks Addie's company during various parts of the day.

Addie and this child have the same skirt. They each count it among their favorites and wear it often, but on different days. The other child has shyly shown interest in seeing if she and Addie could plan to wear it on the same day, just for fun. So I sent an email to her mother to arrange it.

This is part of the response from the mother:

She often asks if Addie can come over for a play date; I've gently explained that it would be too hard for her and for us.....it's so cute though.

I will just list in random order all the thought paths this sentence hurls me towards - some less generous with the benefit of the doubt than others. A titch on the passive aggressive side, but responding seems fruitless to me..fruitless like, say, spending time with Addie. Ooh, and I'm off and running! I choose to disclose here that the last month or so has been one of the lousiest spells (apart from the last post, which still buoys me) for our family in a long while. So my rose colored glasses are scratched, bent and otherwise compromised in their effectiveness. So I'm just gonna let 'er rip.

One more time for reference: She often asks if Addie can come over for a play date; I've gently explained that it would be too hard for her and for us.....it's so cute though.

- cute, yes. Your daughter is darling for thinking that my daughter might actually be capable of a social event like a play date. Really precious.

- You were gentle, that's nice, I'm relieved you thought to spare your child's sensibilities in this. I hope I can be gentle when I tell my own daughter that her friend's mom doesn't think it'd be worth the trouble to get these two kids who enjoy each other together, that she believes it would be a big drag for everyone. And that her friend will be taught to think the same way. I'll have to think hard about a kind way to tell my girl that the door to this particular friendship is being closed - gently, though - not slammed. That the trajectory of acceptance of differences and inclusive thinking that Addie's friend was on is not being lopped off, per se, but just disconnected irrevocably.

- my initial email was in no way a veiled request to drop my daughter off so I can go get a pedicure. The underlying motivation in trying to grant your daughter's request about the skirt was to make it clear to her that I see how kind she is, how generous she is with her patience when relating to my daughter, that both Addie and I recognize how she voluntarily goes out of her way to be with Addie. And to let your daughter know that Addie likes her, too.

- I get how you yourself might not be up for such a thing (this thing that was never even on the table), but how is a play date hard for 6 year olds? In what ways? And how can you predict that it would be too hard for my daughter, whom you do not know?

- If we, as a family, prevented Addie from being involved in things that might be "too hard" for her and/or for others, our daughters would never have met. My daughter would not be able to communicate at all, she might not be walking, she would not have played soccer, she would not be in scouts, she would not do summer activities alongside her friends, she would not ride horses, she would not know how to swim, she would not enjoy visits to various places in the community, longer trips to other places, she would not swing, slide down the slide, run, enjoy ice cream, she would not have experienced the number of play dates and other things with friends that she has thus far.

- your daughter asks about play dates because Addie tells her about the ones she's had with her other friends, because your daughter has heard other kids talk about these fun times, because she has seen the photos. I'd be willing to bet that nothing your child has come to understand about play dates with Addie would make her think it would be "too hard" for anyone, that the effort would outweigh the return.

- we are both mothers who love our children and want them to grow up confident and valued. Why on earth would you think I would want to hear, much less agree with, your assumption that a social life is beyond my child? Why would you believe that I should twinkle at the naivete of children who might believe in Addie, recognize her contributions and enjoy being with her, that I might wink at their sweet nonsense?

Just like you, I'm raising a family here. And I take solace in knowing that the sentence offered to me above is born of an attitude that is the exception, not the rule.

Your daughter and my daughter are kids, they are schoolmates, they are friends. I think that's what your daughter is trying to enlighten you about. She has my most sincere wishes for success on that.

Come Home with Me

2010-03-15T20:18:00.001-07:00

I must ask you to click over to Hopeful Parents for a homecoming of sorts.

Home Again, Home Again, Jiggity Jig

More about words...repost

2010-03-01T08:11:00.000-08:00

From March 2009.

Spread the Word day is 3/3/2010 this year. Take the pledge.

__________________________________________________________________
You see the link below - the end the misuse of the R-word campaign. Wednesday is the day and I will be wearing my snappy blue shirt with the Respect logo on it, as will thousands and thousands of others.

I don't talk about it much, as there are all sorts of assumptions about a mother's perspective floating around. Sometimes it's assumed I am speaking from a gaping wound I have, one caused by having a daughter who was born with mental retardation. Bitterness is often attributed.

I don't have any gaping wounds or bitterness. What I have for my daughter is pride, hope and respect. I have what every mother of every kid has, the desire for her child to find her place in the world and make the most of it. I want for her to know what fulfillment feels like.

But the misuse of a clinical term is a bit of an obstacle to this. As long as people choose to use the word as an insult, there will exist a misconception about the capabilities and value of people who are indeed affected by cognitive differences.

The usual counter to what is packaged into political correctness is to piffle at it - bah, it's just a word and it's my problem if I choose to be hurt by it. I am not actually hurt by it. Nor is my daughter. Hurt is not the right word. I am disappointed by the choice to use the word this way. If regular joe's think it's fine to say, then we are far from the society we can be, we profess to be: one that not only accepts differences, but celebrates them. We're just not there yet.

And this is not a freedom of speech issue - a rule that the word be erased from today's vernacular altogether is not what the campaign is about. We all know it's just a word. It's about rising and becoming a culture where people opt in to respecting those that are often either invisible or marginalized. Use the word all you want. Just keep it clinical and factual.

I know this - when the word retard or retarded is flung to amuse and insult(those of typical cognitive function, that is) simultaneously, I do know that it is not with direct, intended malice to my daughter or anyone intellectually diverse. The effort to encourage thought before throwing out this word to describe something less than desirable is not about the uprooting of purposefully bad intentions people have towards those with developmental disabilities, towards my child - I think those intentions rarely exist, if at all - it's about looking at the big picture to see the affects misuse of this word has on general acceptance and true inclusion (as opposed to just tolerance and/or patronization) of people like Addie. It's about awareness and mindfulness, really. Perpetuating the misdirected use of a word that describes part of who my daughter is stands in the way of my ultimate goal of ensuring she is a full citizen of the planet, contributing in meaningful and valuable ways.

A soapbox this is not. I am on the ground with everyone else. I too, have used this word in the past in just the ignorant ways this campaign is attempting to enlighten. A small chunk of awareness was bundled in with the packet from the geneticist containing our daughter's diagnosis a few years back. Bonus free gift.

You got Addie's back? Somebody else's back? Post a comment here on Farmer John and then make yourself heard by clicking here:

Spread the Word to End the Word

***photo, smile and wonderful afternoon furnished by Addie's other family: The Bautistas***

Word's Worth

2010-02-16T01:40:00.000-08:00

It is the 16th, so I will shoo you over to Hopeful Parents for my monthly post as Insideout510. But I will be sending you there to read a slightly reworked rerun from FJC, so I thought I'd better offer something here, too. They are both brief moments in time, occurrences that for a child without differences, would have gone largely unnoticed. But I got more than the 6 words' worth of meaning out of each.

A line of excited kindergartners files through the school hallway. You can see on their faces that they are about to board a big yellow bus to that blissful land of other-than-school: a field trip. I walk alongside the kindergartners as the lone parent chaperon. I am as excited as they are for I have not boarded a school bus in years and this is my first field trip with Addie's class.

When I take advantage of opportunities to be with Addie's schoolmates, I listen to the murmurs always - seeking perspective on what 5 and 6 year olds talk about, listening for proofs that Addie is understood or misunderstood, honing in small clues pointing in the direction of true friendship for her. Today I hear talk about the bus, the play we're about to see, the snack they had, the shoes they wear, the music class they'll miss, the Valentine's party scheduled for the next day. Without segue I can detect, a head flicks up to me and and shouts "Happy birthday!" It sets off a chain reaction of wishes down the line. The voices grow louder as they smile that smile of kids who think they have something over on an adult. The teacher hushes them.

"What? How did you know my birthday is next week?" I whisper with genuine confusion.

The first child answers immediately, without guile and without a clue of what weight the mother of a non-verbal child might give the small fact:

"Addie told us."

Now shimmy to HP for another 3 words (reposted from September 2009) that herald a fleeting truth, appreciated the more for its transient nature: all is as it should be.

I Heard It.

Zoinks!

2010-01-16T13:59:00.000-08:00

Jinkies, Shaggy. Nobody's at FJC today. Scooby-doo, where are you?

Let's split up, gang. Some of you head to Hopeful Parents.

Like, the rest of us will click here:

Ruh-roh

Nice work, Scoob.

Fly

2010-01-08T07:34:00.000-08:00

Mother-talk and rather cliche, but I will venture that both of my girls can fly. Cate flies in recognizable ways - her charm and wit take her up. She glides when she smiles and sings, when she reaches to bring others up with her. Her kind and encouraging ways are easy to identify, her curious mind is a clear signal of the intention to fly higher. She has grace of her own making, fueled by a willingness to challenge what doesn't seem just in the world. She leaves a jet stream of promise behind her.

People often miss Addie's flights. They are looking beneath her, expecting her to stay on the ground, to need their help and patronization to move a few inches across the earth. But they are not seeing her, they are seeing what they expect of her. If those eyes were raised, they'd just catch Addie's little curly-toed feet carried up and away by her own power.

She fights for everything. She fights with a patient smile and retractable displays of interest. If you won't see her clearly, she refuses to see you. When she ignores those who expect little of her, it is taken as evidence of intellectual blockage on her part. And Addie lets them take it that way. In this, she takes wing. She flies too high for the underestimators to note. They are of no use to her.

Children of diverse physical and/or cognitive functioning are constantly evaluated, assessed, tested. Addie launches above this testing sometimes, deeming it out of context and irrelevant. Often, that is indeed true. She flies again. When she is not being tested, when she feels the faith someone has in her, when she trusts they will raise their eyes to meet her where she is; she delivers. Not an incremental piece of progress towards the goal, but a huge chunk of mastery that proves that even when we said "she can't," she clearly could, but chose not to. And we see this amazing and seemingly sudden feat as whole, not as small attempts. We give her a bigger wad of credit - a larger slice of belief-in-Addie pie - each time she chooses to unveil her potential for believers in these sweeping ways. Thereupon, she takes off again.

For us, her family, the metaphor of flight edges as close as it can to literal when Addie is in the water. She has a control in there that she doesn't have on dry land. Her composure is nearly regal, her wingspread strong and wide. When she lifts her head out of the water, her expression doesn't change - the dauntless beam from underwater rises with her, half moon eyes and cheeks dripping water and temerity. She kicks at us when we hold her in water too deep, small nudges to tell us that she'd like to try on her own. For a long time, we saw only what we feared. We did not let go as she asked, we did not let her try.

But we didn't know back then that she could fly.

Now we know. And as with Cate, my husband and I are just here to toss our girls up and honor their individual flight patterns. We stay on the landing strip to catch them, fuel and detail them during periodic stopovers, preparing them to ascend again.

And the winner is....

2010-01-05T16:44:00.000-08:00

That was your drum roll.

Addie said that there's a 3 way tie: JACQUI, ANNETTE and BRENDA AND MOLLY share the honor. Congratulations. Cate and Addie and I are still deliberating the form your award will take, but will be in contact with individually your for your FJC interviews. Thanks for your thoughts all!

For your reference, the Contest.

The girls and I talked, then thought, then came back and talked again. The truth is we liked all the ideas and wished we could do all of them. Even the "keep it" ones made us smile. Ultimately we decided on a few basics. We'd keep the whole 50$ together and hand it over intact, which knocked a few entries that entailed breaking it up out. We wanted to give it to a person and not an organization or gift administrator, so that left a few more out. We really liked Jacqui's thinking points and considered them throughout the deliberation. We do look at it as an investment more so than as a gift, like a planting of a seed. But we also wanted to wait for inspiration, to be a bit spontaneous about it as Brenda and Molly suggested. Annette's story about someone in trouble right in her own kid's school made us realize that we wanted this small bit of cash that blew in on local winds, to stay in our community, we wanted to plant it in our own backyard, so to speak. In fact, all three of the winners had that in common, the reminder that there are people who might need a boost up right next to us, if we are willing to see.

Nicely played winners and all entries. Reading through the original finding of the bill, the contest rules, the submissions... really gave Cate and I some food for thought as we enter 2010. We will both be focusing a bit more on the fact that we have enough so that we are not in need, that we have enough so that we might share more.

On to execution of the hybrid plan. We have a few gardens in mind to plant this little seed in, but we're still talking about it. On our list are those that would take this tiny windfall as a sign to do a good turn for someone else. And of course, the tale of the handing over will be found here on Farmer John Cheese...someday. I know better now than to throw out time frames.

All the very best in 2010 and every year that follows.
Terri, Cate and Addie

Anticipation

2009-12-22T07:32:00.000-08:00

Links

2009-12-16T14:04:00.001-08:00

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

We Interrupt this Program

2009-11-23T07:23:00.000-08:00

... 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.

Forgot to Mention It

2009-11-17T14:35:00.001-08:00

...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?)

7 days

2009-11-08T18:08:00.000-08:00

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.

Contest: a Long Short Story Made Longer

2009-10-27T08:16:00.000-07:00

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.

See

2009-10-21T10:24:00.000-07:00

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.

Not Prudent

2009-10-19T11:04:00.000-07:00

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!"

Gone Fishing

2009-10-16T14:55:00.000-07:00

...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.

Jarring Mail

2009-10-09T05:38:00.000-07:00

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.
_________________________________________________________________________________

Final 2 Miles in the Dark and Rain

2009-10-02T09:55:00.001-07:00

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:

You Keep Coming Back

2009-09-29T15:00:00.000-07:00

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!

I Heard It

2009-09-24T07:35:00.000-07:00

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!"

What Goes on the Mantel This Year?

2009-09-22T10:54:00.000-07:00

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.)

Space Bag

2009-09-15T11:46:00.001-07:00

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

Starting Gate...Finish Line

2009-09-10T09:14:00.000-07:00

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!"

Four For Friday

2009-09-04T00:00:00.000-07:00

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

One Less

2009-08-28T07:34:00.000-07:00

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.

Stay or Go

2009-08-16T11:28:00.001-07:00

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.

Addison of 6 Years

2009-08-14T20:46:00.000-07:00

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

Make an on-line slideshow at www.OneTrueMedia.com

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

2009-08-12T09:25:00.000-07:00

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)

Nighttime

2009-08-11T23:07:00.000-07:00

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.

I'm a Hopeful Parent, Are You?

2009-08-07T12:38:00.000-07:00

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.

Multipurpose Mom

2009-08-04T11:14:00.000-07:00

(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.

A New Dimension Opened Up 10 Years Ago Today

2009-07-26T00:01:00.000-07:00

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.

Make video montages at www.OneTrueMedia.com

The Stare as Defined by Pollyanna

2009-07-17T07:56:00.000-07:00

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.

Not in Today

2009-07-15T20:49:00.000-07:00

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

2 Per Bag

The Was Is Bug

2009-07-08T07:31:00.000-07:00

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.

Freedom

2009-07-03T06:50:00.000-07:00

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.

Can't Blame Her This Time

2009-06-29T06:59:00.000-07:00

(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.

Counts

2009-06-25T05:54:00.000-07:00

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.

This Week in Pictures

2009-06-15T15:41:00.001-07:00

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.

15000

2009-06-09T12:54:00.000-07:00

Take a bow, Addison. 15,000 hits!