Saturday, December 17, 2011

Factory Axis

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)

Factory Axis

The Vespa swayed and popped as I gripped the seat under me. My hands were wet from rain and mud splashing back up. I didn’t articulate the question in my mind, but it was there: what the hell was I doing on a motorized scooter on Christmas Eve on country “roads” in Taiwan? As my wet hands slipped one too many times, I realized I’d have to hold on to the driver. I reached around Tom and gripped the edges of the pockets on his leather jacket. The beds under my nails stung white hot from pinching tight in such damp cold.

I didn’t know much about Tom. He was of Irish heritage and called Chicago home. I’m not even certain how we met, beyond realizing that two Americans, and Midwestern Americans at that, in the northern part of the island known as the Republic of China, Taiwan, we were bound to meet eventually. Nor could I conjure up much of a story as to why he invited me on this Christmas Eve junket, or why I accepted the invitation without thought. I’m sure we were both just trying to make the best of it. As two people thousands of miles from home on our own by choice, I think we were both inclined more towards yes than towards no by nature.

As we bounced through the rough roads and puddles of unidentified liquid, I planned how I would not like it when we got there. It could not possibly be good. With each jerk of my neck, I staged my disgruntled judgment of our destination. I said yes, but it still felt somewhat under duress. It’s a church, after all, and I haven’t been very churchy since I exited my family-mandated 12 years of Catholic school years back. And while I’d gotten to know the Taiwanese during my year and a half as a teacher there, the language and culture to some extent - this would be a Filipino church we were headed towards, per Tom’s invitation. The entire mass would be in Tagalog. I knew I would not understand a thing. I anticipated thinking of my family, of the 7,383 miles I was away from the only kind of Christmas I knew. It was, at least, a Christian church and would be closest to the Christmas Eve masses I’d observed at home - a far stretch from the strange pageantry of Christmas celebrations happening among the Taiwanese, who for the most part do not concern themselves with acknowledging the origin of the holiday as the foundation of Christianity.

In my mind, I was not home and so it could not really be Christmas.

We arrived at the modest chapel in the middle of bleak fields and marshes barely made out in the darkness. Tom parked the Vespa next to a short row of others, not a single car to be found. Because of this sparse array of transport, I anticipated a drearily scant congregation. Tom noted the skepticism on my face and informed me they do not have cars and only the very wealthy have scooters. Most would have walked from their “homes,” tonight, through those fields and marshes he pointed to. I felt the word “homes” in quotations in the way he said it, but we talked little, so I did not question.

He pulled the door open to a din and a light that have not been matched for me in the 20 years since. The ornate pews were packed. The aqua colored paint on the walls cracked, but the alter and carved stations of the cross were pristine. No single body filling the pews was still for more than a moment. The band at the front warmed up, but it seemed movement was choreographed to their haphazard sounds even still. Everywhere smiles, handshakes, pats on the back, hands held, hugs prolonged – a joining of person to person, person to next person so graceful and constant. The level of genuine affection lead me to guess it might be one large extended family. Except that there was not a single child in the church. The entire congregation was made up of adults ranging in age from 25 to about 55.

As Tom and I found our spot, the band opened the ceremony with nothing I’d ever heard in all the Christmas Eves I’ve celebrated. It appeared to be a sort of folk/rock/bluegrass approach to the traditional Christmas carols I knew, but in a language I’d never heard. The musicians were so earnest and so enveloped by their craft, that for brief moments, right at this opening song, I’d forgotten about my quest to disapprove of this experience.

The spoken rites of mass ensued and in its subdued progression, I was released to mourn what I missed. I missed my family, my own church from childhood – if not from faith, then from a cultural adherence. I missed my family and the thought of the sugary buffet of sweets that certain members of the family would be laying out as the rest of us were at mass. I missed the firm tweed shoulder of my dad’s suit jacket against my cheek as I leaned, inhaling the incense from our pew as I dreamed of the chaotic cadence of a holiday at home with my mom, my dad and my 9 brothers and sisters.

Tom’s pinky showed up in my view as his hand waved hesitantly in my range of vision. I was weeping and I did not know it. Tom and I did not know each other well and perhaps we would be friends one day, but we weren’t yet. What was he to do with this sobbing girl that he’d brought into this community that he understood, but that she did not? He waved to inform me that he was my host, my connection between where we were and me, and that I was audibly crying, and that that was not very cool.

The band began again. In an effort to rally, I leaned a little closer to Tom and whisper-asked about his family. I came to find it was also large. I thought about how much my sisters would enjoy the music, my big sisters who formed all of my tastes in music, literature, people… in everything. If only they could be here. I know they would support a love for it.

At some point in this mass that was surprisingly predictable in its order, unpredictable in its spirit, I stopped thinking about the Christmases that were, and thought about the Christmas that is.

As the observance ended and we milled out, Tom introduced me to a few that he knew. We were of note from the start as the only non-Filipino participants, though it seemed to make little difference. As Tom’s Mandarin was better than mine, the common language between us and our hosts, he made arrangements I knew nothing about.

We got back on the Vespa and continued on through the marshy dark, following others with scooters, leaving many to walk the same roads behind us. The only explanation I got from Tom, which I apparently accepted was “We are invited.”

Eventually we arrived at an industrial building. We entered among the smaller group who rode with us through a back door. We walked up two flights of stairs past unwieldy machinery that confirmed my suspicion that the building was a factory. Up on the 3rd floor there was a subsection built off with walls and a ceiling, like a little loft in a huge open warehouse, a hive in a tree. One of the young men, about as tall as I am, turned to me as he opened the door and said in English, “Home.”

Burners were warmed up, chairs were unfolded, gifts were procured, stories were told. The walkers arrived and left their muddy shoes at the door. In a stilted, broken progression between what Tom already knew and the stories our hosts now told us, I came to understand certain things.

The group of 20 or more that lived/worked in this factory all had families at home in the Philippines. Many were highly certified and educated, but could not make a decent living in their home country. They left their families there and came to Taiwan to work and live in the factories to send money home. Some were the fathers, some the mothers, but all had people that they loved and supported 700 miles away. They lived on cots and electric burners here, fueled by 10 hour factory work days and envelopes home filled with more money than they could make if they lived with the beloveds they made this sacrafice for. A few talked about how they came to the decision on who would leave to work here, mom or dad.

And yet they smiled and celebrated and welcomed us. The honor of guests was palpable as guitars were unveiled, music played, gifts appeared, food offered. I sat on the edge of a cot as a woman so proudly showed me the photos of her small children on the wall behind us, told me in her best English that she have enough go home 1 year and go back be pediatrician and mom.

The message came across strongly that they believed they had something in common with Tom and I as English teachers from America on a visa, away from our homes. But the truth was that I got paid 3 times as much as they did for half as many hours and I did not have a family to support. I lived in my own room in the nice house of a Taiwanese family. I was young and foolish and was there by choice, not obligation. They knew this. I knew this.

But they didn’t put it between us, they chose to connect based on the few things we did share. I’ve never been given a gift as generous, as meaningful, as useful.

We stayed late. We drank whisky. I laughed out of contagion, for the gratefulness and celebration in that factory/makeshift home was not less than, not equal to, but greater than what I understood Christmas Eve to mean.

I don’t know what happened to Tom. I know he was a friend for as long as I was there. I still have some cassette tapes he made for me. My kids will never meet him or my gracious hosts from Christmas Eve in 1991. But a crucial part of who I am as a parent, who I am as a hopeful parent who was, at one time, certain she would not be game for this disability parenting ride, comes from that swampy factory Christmas Eve.

Peace and joy to you, no matter your circumstances.

Saturday, December 10, 2011

50,000 and Counting

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.

Wednesday, November 16, 2011

That Thing I Don't Talk About

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?

That Thing I Don't Talk About

I pull into the driveway and glance up to my porch. In front of the door sits a big brown non-descript package. There could be ANYTHING in there. A surprise! Each month I indulge my fancy and play the part of someone who does not already know what she will find when she tears the packing tape off and unfolds the flaps. I try my best to conjure the limitless expectations of Darren McGavin’s character, Ralphie’s dad, in A Christmas Story as his “major award” is delivered. It’s here, it’s here! Some days I even tap my fingertips across an invisible word on the cardboard and slowly, profoundly emulate his wishful interpretation of the letters, “fra GEE lay.” The irony is that though the box doesn’t actually bear such a stamp, my forehead could easily read “fragile” at such moments.
Upon my first kick-shove of the box into the front door, the game ends. For I know what it is. It came last month and the month before. It’ll come next month.

It is nothing so fantastic, light and burden-free as a leg-shaped lamp.

Sometimes I let it sit just inside the front door where I won’t often pass it. I pretend that it’s too bulky for my short self to carry downstairs and dispatch into its storage space with what’s left from the last box. Rare are the times it doesn’t send me to such willful denial of its existence that I’m rendered unable to spirit it away in the name of tidy, objective detail management.

Today I let it sit.

This box changes nothing, adds nothing, promises nothing. It’s not a surprise for my girls; it’s nothing for me or for my husband, our house or our cars. It’s not full of gifts I’ve carefully picked out for others. In fact, we have no choice at all in this. It’s delivered for the cognitive and communicative differences, low muscle tone, sensory issues and motor processing problems that conspire to make this box a requirement on a monthly basis.

Inside are purple-wrapped cubicle stacks from the medical supply company for my 8 year old with Rubinstein-Taybi Syndrome. The customer “care” reps at the company are sticklers about calling them incontinence products. The generic looking logo on the package demurely refers to them as pull ups. But I call them what they are: diapers.

Diapers have been in our lives for more than 12 years, with a brief respite of about 18 months in there before my younger daughter was born. I have only 2 kids. Sure, my mom had 10 kids and used cloth diapers, so she has me way beat in quantity, duration and effort. But from the very beginning she had a general idea of when it would end.

It’s the fact that there is no clear path to the end that makes it daunting. I have long ceased finding the act of doing the changing particularly inconvenient when we are at home. It’s just part of everything now. But the ways we have to consider her dignity, her privacy - who knows, who doesn’t know, who might mention it around whom – that is what’s exhausting now. Energy further evaporates when I inevitably wonder if we’ll still be managing these things a decade from now, 2 decades, 4…

We grapple with the few scant invitations and social engagements she gets, wondering how we can figure the logistics if she needs to be freshened. When we visit other homes, I measure how long we’ll stay by whether the host is likely to be able to discreetly handle my request for a plastic bag and to know where the outdoor garbage receptacle is without asking too many questions. We size up public restrooms, worrying about space, germs and location of waste bins.

Low rider pants are a bane when you have a child who employs a sensory satisfying stance of a tripod - hands and feet near each other on the ground and her derriere airborne. The slippage of her Levi’s partners with the impossibly high waist of the papery Medicaid-funded pull-up knock-offs to leave no shred of mystery.

You can’t chat about this with your family and friends. Even my friends within the disability world, we guard our child’s dignity and our own fragile case we keep some things in, and we keep quiet. I can’t bear to hear the earnest suggestions of others, thinking I’d never considered the techniques used with my older daughter, thinking perhaps the problem is that I have given up. I haven’t. I believe in my heart of hearts that it will happen one day. Whether that day is weeks, years or decades from now is the question. The blithe statement mothers of preschoolers offer mothers of toddlers sends me to a place I don’t like to spend too much time in. “Well, don’t worry, it’s not like she’ll go off to college in diapers.” It’s possible. A kid could go off to college in diapers. If that kid would be accommodated in college, that is.

There are worse things, yes. But it adds a daily layer of complication and general hope-suck that compound the energy-devouring effort already put into every single detail of this disability life.

This is just so incongruous with who she is, how clever she is, what a social, complex, witty, inquisitive, powerful young lady she is. Whether we want to admit it or not, knowing someone wears diapers whether as a result of being very young, very old or very different, it simplifies that person in most people’s eyes. It reduces them. Her dad, her sister and I are in constant combat with this reduction of our limitless girl every single day.

There it all is, laid out. I cross my fingers for her dignity, that you who know her and read this will protect it as you would her physical being. I cross my fingers that the combination lock requiring so many developmental mysteries to align just so, clicks and pops open one day.

I cross my fingers for a porch void of anti-surprise packages.

Sunday, October 16, 2011

Reminded to See

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.


Saturday, September 17, 2011

One Day Late

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:


Tuesday, September 6, 2011

Something to Talk About

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.

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

Wednesday, August 24, 2011

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

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!

Tuesday, August 16, 2011

Right 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:


Monday, August 15, 2011

Pool Party in her Pocket

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 let's get back in the pool!

I love you,

Tuesday, July 26, 2011

She Wears her Soul on the Outside

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.


Wednesday, July 20, 2011

I Do Not Know Thirst

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

Saturday, July 16, 2011

Present Pacing

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:

Thursday, June 16, 2011

To Pry Off a Cap

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.

Wednesday, June 15, 2011

Pics, Please

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

Monday, May 16, 2011

Temporary Impasse

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

Friday, May 6, 2011

Handle: Reshuffle to the Top

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.


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


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."

Tuesday, April 26, 2011


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.

Saturday, April 16, 2011

Bucket-Fillers Need Not Apply

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.

Monday, April 11, 2011

Neighborhood School

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.

Wednesday, March 16, 2011

Let's Dance

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.

Wednesday, March 2, 2011

Opt In

Today is the day to take the pledge.


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?

Tuesday, February 15, 2011

To Raise

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

Monday, February 7, 2011


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.

Sunday, February 6, 2011

Let Us Help You

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

Dagger! (Cheeseheads will get that)

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

Sunday, January 16, 2011


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


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