New site

Listen, there’s a new site in town for those of you with kids, those who know kids, work with kids, see kids scattered here and there.

Especially kids with special needs.

Hopeful Parents. It just launched. Go check it out. 

If you’d like to be part of it, join. Pass the word.

If you’d like to contribute, go here. 

I’m over there today, talking about disobedience of the civil variety, puzzling it out.

Stop by. I’d love to hear from all of you.

Go and find ye a life coach

Christina is the ultimate ultra muse. I love her! Adore her! 

She’s my coach, my life coach. I found her a year ago last August, after sending out feelers for a personal coach here, there, and everywhere, including on this site. I gather three or four possibilities and set up appointments for sessions, all free. And like the samplers at a cocktail party, I stood around with my toothpick held high as trays sailed by with little mushroom caps and endive cream cheese boats and olives stuffed with feta–pluck pluck!

She was, by far, the best. She *got* it. At the time, I was wringing my hands over my blank pages, the ones that needed actual words on them, coherent, persuasive words, organized into sections of a book proposal to be submitted to publishers. I had never written a book proposal before and I was teetering between paralysis and mania. 

Since then, the proposal got written, the book sold, the writing gathered, and my own clarity of vision in all areas of my life has slowly but surely emerged, like the defroster working its magic on the windshield, expanding outward from the hood in a glorious fan, pushing back the fog, broadening the view. 

It’s powerful work–emotional, spiritual, practical, energetic and down to earth all at the same time. For all my years in therapy, all the journalling and self-helping, all the workshops and pounding of pillows, yelling in elevator shafts and empty cars zooming along the highway, these sessions are the thing that is marching my life closer to what feels right, feels true. Those other things gave me a bucket-load of insight but it didn’t help me ‘be the change I wished to see’. Okay. It did a bit. A bit. But not enough. 

I am here to sing Christina’s praises. And link you to her new website, Ultra Muse, which I’ve listed on my sidebar under Inspiration because she is inspired.

Go. You know you’re curious. And as you read, ask yourself the question she poses at the end of every email she sends: Tell me, what is it you plan to do with your one wild and precious life?

Well?

Share this:

i’m tired of telling people what i want them to do. and then telling them again. i want them to take it–here–i’m reaching out my hands to give this to you. take it. i don’t want it.

i want a slew of people to help me realize what matters to me. i want a team. with matching t-shirts. team kyra. i want them in shiny new sneakers. i want them in a line every morning while i hold the gun’s muzzle up to the sky, the clouds waiting to split into a translucent sheets of white wispy wool. i want them, quivering, crouched down, knuckles against the pavement.

ready set go. 

what if i awoke in the dark of the night, up from the dream i was having as through black water, through the center of the flower made by droplets delicately arching up and back like miniature ballerinas. what if i came up violently, gasping, relieved to find whatever dread had been stalking me was a phantom.

but still.

it would be dark. the dark of the hallway on the way to the bathroom that makes me feel my way against the wall and think of audrey hepburn in the movie where she’s blind and alone in her apartment with the killer in his raincoat.

what if the way was marked by words hanging, loops of cursive made of  rope, twine, string, vines with twirling tendrils, reaching for something to anchor them but it wouldn’t be me.

what if i had to actually touch them, the words i needed, the letters i had to find to corral in rows, pages upon pages. would some feel more right? thicker? scratchy? hot? would they slip? would some stick like the ice cubes on my fingertips when i reach inside the bin?  

i think we’re all writing in the dark, feeling our way to the language that describes our experience, our longing, our sadness, our dissapointment. reaching our other hands over to guide us, imperfectly, clumsily.

 

Nurtured Heart–update

The need to feel competent is part of our program, our human program. We have a built-in drive to feel a sense of mastery, success.  I think that’s the heart of what is challenging about having kids with special needs, especially in the area of social connection since it’s assumed all that comes naturally, give it time, they’ll grow out of it, just get out of their way!

When our kids don’t simply figure it out, when they aren’t able to *get it* through stories and charts and coaching, through osmosis and sheer determination, through games and treats and prayer and love and time, when we see them wince, rail, attack, feign indifference, withdraw–we feel pain. It’s a complicated pain and it’s a simple pain. We want for our children, for them, but we also want for ourselves, to feel successful, to feel competent, to be effectual at this thing called parenting, teaching, guiding our children in the world.

We are all connected. We affect each other. That’s the system here. Cause and Effect. Action Reaction. Push pull. It’s dynamic tension. Without it, nothing gets made. Without it, somebody falls to the floor while the other one dances alone. All communication is a conversation and if it’s not, then it’s not communication; it’s just this person saying that, that person saying the next thing or this person doing that, that person doing the next thing. There is no momentum, no new learning, no creation, only scattered words and gestures and often much heartache. Rage, depression, anxiety maybe but under that, heartache.

All this to say that we are finding it extremely important to provide respect and privacy around the Time Outs. What I mean by that is, when we are out in public or when someone other than the three of us are at home, we whisper into Fluffy’s ear, “Oh, broke a rule. Time out.” 

I took Fluffy to his first lego league meeting yesterday. It’s a small group, three other boys one of whom is on the spectrum. There was much cooperation and collaboration but also much grabbing, some yelling, and a pinch of pushing, not all of it from Fluffy. I pumped up my Creative Recognition muscle and beamed the hot rays of Nurtured Heart at the other boys and it was stunning. It was like this quote from the back of Glasser’s book for educators called The Inner Wealth Initiative:

“When we recognized their successes out loud, the younger kids’ whole bodies moved toward us like a time-lapse photo of a sunflowers moving toward the sun.”

Each time Fluffy broke a rule, I quietly whispered our phrase to him and every time he immediately stopped and sat down. In fact, the last time, he sat down the second he looked over and saw me walked toward him.

On the way home he said, Mom? The Time out is so short. It isn’t even bad. It’s like taking a break! It’s just a way to say to myself, Oh, I broke a rule and then I take the break and I calm down! 

Yes! Exactly! I said. That’s what it’s for!

Right? Isn’t that what a time out is for? To calm down? So the child can regroup? And if that’s so, ought we to be calling  it out to the world? NO! STOP THAT! PUT THAT DOWN! YOU ARE GOING INTO TIME OUT MISTER!  Will that foster a sense of success for the child? 

Glasser says, kids know the truth. They know. They know when they do something that’s not okay. And they want to do something that is okay, that feels on course. They want to create. And what they need from us is our part in that process, this respectful quiet pause, so they can reconnect to their own knowing, not broadcast to the world they they got it WRONG.

I see him gaining mastery of his own body. He’s doing it. 

I see myself clearing the path so that is possible. I’m doing it. 

My heart is singing for both of us.

now i’m ready for anything!

You must see this!

 

For the high-definition, full-screen version, go here. It’s worth it for the colors, the details, and the full expansion of the heart and smile that can’t help but happen as you watch Matt dance everywhere with everyone.

Nurtured Heart, Time Outs

We’ve been laying on the Nurtured Heart ‘recognitions’, aerating the soil, plumping the pillows, stocking the fridge, every sort of metaphor you can muster, we’ve been doing it.

The juiciest ones to do are the Creative Recognitions, the times I accuse Fluffy of success when he’s in the middle of dysregulation, which happens a lot. That’s the most rewarding recognition for me these days since it’s the time when things, historically, are the most tenuous, when meltdowns and lectures stand eagerly in the wings, practicing their lines.

In fact, if I could sum up Fluffy’s greatest challenge it would be that: self-regulation, holding on to himself during strong emotions–excitement, worry, fear, disappointment, frustration, confusion, embarrassment, anger. It’s like the term ‘flooding’ that the marriage counselor Gottman believes happens within relationships when one partner gets triggered and a cascade of internal physiologic responses rush through the body like water through the broken dam. 

With Fluffy, it doesn’t only coincide with strong emotions. It happens in response to overwhelming sensory input and unmet physical needs. He sometimes forgets that he is a being of the earth and needs to eat, go to the bathroom, drink water, wear sufficient clothing. 

Not surprisingly, my greatest challenge dovetails with Fluffy’s; his dysregulation triggers my own.

When I come home and the sitter has neglected to present a snack and Fluffy is pinging off the ceiling, I get anxious and irritated. He needs food!

When Fluffy is sitting on the five-year-old neighbor, yelling various mocking tones in his face because he is frustrated by his inability to get a game going (the boy keeps saying, No, I don’t want to play that…) I feel the pressure mounting in my chest.

When I am at my desk, swimming through the stacks and piles and Fluffy keeps escaping his room at bedtime to climb into my lap or reach into my shirt or poke me in the face or wield my mouse and wildly paw at the buttons on my keyboard, I feel like grabbing his wrists and yelling, STOP IT STOP IT! and maybe launching into a mini-lecture about respecting my things and my personal space.

It is at those moments when my patience and calm is paper thin, when the rope I clasp is tattered and frayed. It is at those moments that Nurtured Heart comes galloping in, taking center stage with his mighty energy sword.

I wait for the break, tiny as it may be–Fluffy’s inhale, and dive in. Thank you for pausing! I so appreciate that you stopped poking and grabbing. That takes great inner strength! I admire the self control you are using! 

It’s becoming the new habit. It not only helps Fluffy but it’s really helping ME return to balance. Let’s face it, how effective am I as a guide if I’m knocked off kilter by whatever is going on with him?

After a few weeks of laying on the Time Ins, we introduced Time Outs. Yesterday. Inauguration Day. It felt fitting.

Before you introduce Time Outs, you need to decide on the rules. Glasser says, you don’t need to post the rules, just (1) make sure you are crystal clear about them yourself and (2) never let one slip.

Guidelines for setting rules: Frame them in the negative and be very very specific, ie, ‘No yelling’ NOT ‘Indoor voices’; ‘No pushing’ NOT ‘Gentle hands’; ‘No mocking’ NOT ‘Be nice’. 

Our Rules

1. No yelling or screaming in someone’s face

2. No mocking

3. No teasing

4. No pushing (hitting, pinching, grabbing, holding, poking, punching)

5. No licking other people

6. No spitting on others

7. No writing/drawing on the furniture

8. No disobeying the timer that mommy and daddy set when it goes off

9. No banging silverware, dishes, cups, glasses 

10. No contact with others while they are on the swing

Dave and I decided to keep our list of rules relatively short, at first. We’re not ready to enforce certain rules that we know would be hard for Fluffy and that we suspect might make him spiral farther in the middle of a meltdown.

For example, take the first rule: no yelling in someone’s face. We aren’t going to make ‘no yelling’ a rule yet since Fluffy often yells quite a bit as he storms around and then races upstairs to take a self-imposed break after an upset. When that happens, we’d rather celebrate his (1) ability to feel his strong feelings, feel them without (2) hurting himself or (3) us, (4) without hurting the house, (5) without throwing things AND (6) having the self-control and wisdom to leave in order to calm down. Six huge successes! If we were to give him a Time Out for the yelling in the middle of it, we would have short-circuit all that learning and his own emerging empowerment.

We sat down in the morning and talked about how great things have been going lately, how proud we are of Fluffy’s behavior, his respectful, creative, sensitive, lively, inventive, energetic, cooperative energy. We talked about how mommy and daddy used to sometimes get mad or talk on and on or argue when Fluffy broke the rules but we’ve decided it doesn’t work and so we’re not going to do it that way anymore. In fact, we’ve been trying it the new way for a while and we think it’s much better this way.

That’s great! Fluffy chimed in! Not only does it not work, Mom, it actually makes things worse! he elaborated. Yes. We agreed!  We’re going to do our best not to give a bunch of energy to when things go wrong and instead focus on how much is going right.

Oh, Fluffy said, Now that you mention that, I DO notice that you haven’t been doing that lately and I really appreciate it! (Is he doing NH on us?)

We outlined the new system: when Fluffy breaks a rule, we’ll give him a consequence. The same consequence every time. Not a time out one day and taking away a toy the next or taking away dessert or taking away computer time on another day. Always the same thing: a Time Out. We’ll say (flatly), “Oh, you broke a rule. Time out.” and then we’ll have him sit quietly, ie, no talking, no playing, no reading, no eating, until we say the Time Out is over. 

We told him he had our permission to break any rule, including not taking the Time Out but that things like computer time or desserts or extra books at bedtime couldn’t happen until the Time Out was done. Okay, Mommy and Daddy, Fluffy said.

And then we practiced what a Time Out would be like. We said, let’s pretend you just broke a rule. “Oh. You broke a rule. Time out.” Fluffy sat still. I looked away and counted to about fifteen in my head and then turned around. “Okay. Thank you for taking your time out so cooperatively. I really appreciate how you followed the rules and didn’t argue or delay!”

Later that day, he had a playdate and let me say, there were plenty of opportunities for real life Time Out enactments. We had some rough going–that’s for a different post–but all in all, he respected every Time Out and we kept to our own promise about how they would go. There was a moment when I felt the righteous words rise in my throat, my hands itching to take an offending item away, but they passed and I was soooooooo proud of myself for not stepping all over this little seedling, peering in all its green glory through the dirty white snow.

Fluffy was pleased to learn that every rule except #8 applies to Mommy and Daddy. Our consequence for breaking them? Cold hard cash into the Swear Jar which has now become the Rule Jar.

What will we do with all the money from the Rule Jar? Fluffy wanted to know at bedtime. I don’t know, I said.

I think we ought to give it to kids who don’t have very much. I think we ought to use it for good. That way, even though it came from something not good, it can be transformed. 

Huh. Part of the energy revolution. I think it’s a brilliant idea.

Community, Part 1

There’s an interesting discussion going on at John Robison’s blog about blogging moms of kids with special needs and community, real versus virtual community though is there really a difference? Go on over and check it out.

I read and commented this morning and then, as I scurried to my new therapist’s office where we were to do EFT and the tap tap tap–one more component of the energy revolution over here at Fluffy Central, this one geared toward releasing my own internal emotional/psychological knots from the past–I had this thought:

When you get what you need, you give what you’ve got. 

That’s what we are after, us moms of our special kids, what we need in order to give what we’ve got, to them, to ourselves, to our communities. Come to think of it, that’s what we’re all after, isn’t it?

TODAY’S THE DAY!

Are you all a-tingle?? Are you watching the news? Wandering the streets of DC this very moment? chatting with friends on the iphone? blackberry? twittering? facebooking? updating your own blogs? snapping video? stills?

I don’t know what I’m more excited about, getting rid of that bum or welcoming in our new knight in shining armor: shining black armor. 

Fluffy and I are making cupcakes today, black coated in white frosting, to commemorate our first black president in the white house. Our black/white president. Our president! 

Obama is our president! As of noon today! I can’t stop saying it!

We’re off to watch the swearing in at a funky general store/restaurant in one of the surrounding hilltowns. Fluffy just got dressed entirely on his own–I mean, picking out his own clothes (which is the hard part for him) putting them all on the correct way (which also is the hard part for him) and within a few minutes rather than a few hours (which is, er, the hard part for him)–and ran over to stand tall and proud in his powder blue Obama T.

My sister and her son are down there this minute, staying with my brother, sister-in-law and their two kids. They’re, right this minute, bustling shoulder to shoulder along with the crowds. It must feel invigorating: the crisp January air swooping in and around all those coats and hats and blankets, the rising tide of anticipation and celebration.

Happy Inauguration Day to all of you! May this usher in a time of greater freedom, greater justice, greater wisdom and greater peace.

books i want and you will, too

Hmm. Books I want…that’s a long list.

I just finished reading The Mercy Papers. I loved it. I loved how seamlessly Romm weaves stories and scenes from her past into the present narrative–the last three weeks of her mother’s death. I love how she writes, period; I love how she writes scenes in particular. I can’t wait to get my hands on her book of short stories, The Mother Garden. It’s on my list.

Writing scenes is tough for me. I zip along with my summary, hoping a scene will spill out on the screen by chance or chicanery but no, every time I get to where the scene needs and wants to be, my eyes dry out and my hands freeze. But that’s the secret, isn’t it: finding the balance between scene and summary. 

I won’t give you my whole book wish list. I will, however, urge you to buy a copy of what I’m reading: The Suicide Index; Putting my father’s death in order, by Joan Wickersham. Wickersham’s formatting is a stroke of brilliance, chronicling the suicide of her father’s death in the form of an index spanning many years before and after the event–as is her writing, the art of blending scene and summary crafted to perfection. I want to be reading it all the time. Right now, for example, I’m a little resentful that Kyra keeps making me type this entry.

Two more on my waiting list:

 

Heaven Knows I’m Miserable Now. I just saw it by the checkout of one of the many independent bookstores in town and wanted it. He says he’s miserable but look at all that yellow! Hopeful yellow!

Andre Jordan, the author and artist, writes and draws and has struggled with depression. Who wouldn’t want to read about that? His doodles are featured on the wonderful BBC website I just found today called, Ouch! It’s a Disability Thing.

 

 

Grey Brown is a wonderful poet whose work I have the honor of including in soon-to-be-published anthology that Vicki Forman and I edited, Gravity Pulls You In. I’m thrilled to announce that her collection of poems about her daughter who has autism, When They Tell Me, can now be pre-ordered from Finishing Line Press. Here’s a link to the JAMA publication of the title poem.

And some praise for Brown’s book from Ann Palmer, author of Realizing the College Dream with Autism or Asperger Syndrome; A Parent’s Guide to Student Success and co-author of Parenting Across the Autism Spectrum; Unexpected Lessons We Have Learned:

“When They Tell Me is Grey Brown’s personal story of her daughter with autism, but it is my story too and the story of any parent who has a child with a disability. Through her wonderful descriptions of motherhood, worries, and diagnosis, she draws the reader into her world. You understand and share her feelings of fear and confusion. You celebrate her hopes and love for her child. These thoughtful and powerful words confirmed my own experiences and comforted me. For those who have not shared this particular journey, it will offer an incredible insight into a parent’s overpowering love for their child and the challenging journey to acceptance.”

Congratulations, Grey! 

Now, click those mice or those heels and be off to the bookstore!

what did i expect?

Every once in a while, I grab one of those trashy magazines from the stands near the grocery check-out line because I simply HAVE to find out what happened to Madonna and Richie or confirm that Angelina Jolie is pregnant again with twins again (have the stars figured out how to speed up gestation? Is it me or do these stars deliver full-term infants in 90 days?) or see just how thin Katie Holmes can get as she, poor thing, tries to disappear rather than admit defeat under the intense white hot glare of cruise-style scientology (perhaps she just needs one more AUDIT). 

Sooooo, a few days ago I picked up the latest Star, more for the details of SJP calling it quits on Mathew Broderick (I was truly sad–isn’t that queer of me? ) but also for the story on Jett Travolta’s death and I came upon this paragraph:

“It has long been suspected that Jett, who had rarely been seen in public, was suffering from autism, a mental illness chracterized by difficulty in social interactions and communication–as well as a propensity for seizures, if the symptons are left untreated.”

Ah, WHAT?

There SO MANY things wrong with that paragraph. As I read it out loud about three times, with mounting incredulity, Dave listened impassively and then said, Honey, what did you expect? Look what you’re reading.

I know, I know, I said, and continued to reread the passage, pausing to repeat each erroneous section, my voice climbing up to the ceiling.  Listen to this: “Autism is a MENTAL ILLNESS” A mental illness? “Characterized by a propensity for seizures” A propensity for seizures?  “If left untreated” If left untreated? Oh, I see. If you don’t treat your child’s autism, ie, their mental illness, they will start to seize. Better treat that problem with social interactions and communication too, or they’ll surely start to seize!!

Ug. 

The age of misinformation. I guess we are squarely still in it.

Is there any way to make this Bush’s fault?