Wednesday, December 22, 2010

Abundance

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."

Thursday, December 16, 2010

Wishlist

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.

Tuesday, December 7, 2010

Words of a Sister

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.

Tuesday, November 30, 2010

You Break Yourself

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."

Sunday, November 28, 2010

Two

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

Tuesday, November 16, 2010

The Bounced Q



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)

Tuesday, November 2, 2010

Signs

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.

Tuesday, October 26, 2010

Run the Risk

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.

Saturday, October 16, 2010

Right On Time

One more click to get there on Hopeful Parents:

Right On Time

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

Friday, October 8, 2010

Compelled to Post a 3rd Time

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.
_________________________________________________________________________________

Wednesday, October 6, 2010

Overheard: 2nd Installment

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?"

Tuesday, October 5, 2010

Edit. Delete.

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



Yes. I'm sure.

Thursday, September 23, 2010

Interview with Support for Special Needs

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.

Monday, September 20, 2010

Another one? Already?

Guess what day tomorrow is...

Here is a hint:

Mantel

We shall see...

Wednesday, September 15, 2010

Butterfly Effect


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.

Saturday, September 11, 2010

The Last 20


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)

Wednesday, September 1, 2010

Handle

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.

Friday, August 20, 2010

Something to THINK About

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.

Monday, August 16, 2010

I Am A Parent

... 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.

Sunday, August 15, 2010

You Make Yourself Clear

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.


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

Tuesday, August 3, 2010

As I Was Told

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.

Monday, July 26, 2010

It All Started with You

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.

Monday, July 19, 2010

Kids in the Summer. Nothing New Here.

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.

Friday, July 16, 2010

Captured, Coveted, Captured Once Again

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...

Wednesday, June 23, 2010

(fill in the blank)-proofing

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.

Tuesday, June 15, 2010

In Defense of Hope

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!

Wednesday, May 19, 2010

Your Kid Gonna Make Toast or Make a Difference?

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

Sunday, May 16, 2010

I have a...

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

Check out today's post at Hopeful Parents.

Standard Needs

Friday, May 7, 2010

Not Needed

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.

Wednesday, April 28, 2010

Rerun: Jarring Mail

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.
_________________________________________________________________________________

Friday, April 16, 2010

Question and Answer

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

Sunday, March 28, 2010

Continuing

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.


Thursday, March 25, 2010

Reminded

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.


Monday, March 22, 2010

easy to forget

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.

Thursday, March 18, 2010

Angry Post

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.

Monday, March 15, 2010

Come Home with Me

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

Home Again, Home Again, Jiggity Jig

Monday, March 1, 2010

More about words...repost

From March 2009.

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

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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***

Tuesday, February 16, 2010

Word's Worth

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.

Saturday, January 16, 2010

Zoinks!

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.

Friday, January 8, 2010

Fly


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.