Daddy's Home

Every sixth weekend, Todd works crazy hours. Nine in the morning til' nine at night, both days. Yesterday, the kids took naps so they could stay up late to see him when he got home. Today, they are off with him to Sam's, the pet store (more flushable kitty litter), Best Buy, etc.

For me, time alone in my writing cave!

Life is good.

Educational Stereotyping?

In researching LD schools this weekend, I looked up a very well known, well respected school in the DC area. I lived in northern Virginia just across the bridge from DC for a few years post college and loved it. For a long time I wanted to move back, but after the kids it didn't seem quite so attractive. Still....if it were for a school for Riley...maybe?

Maybe not.

In reviewing their admissions policies on its website....the school states specifically that prospective student's learning disabilities may not be the result of "autisim, Asperger's, or PDD"
( a handy term for kids on the spectrum we don't know how to place...stands for pervasive developmental disorder...nice, huh?) . This is discrimination, plain and simple. Autism is a spectum. A very broad spectrum. You cannot possibly lump all of these kids together and make an assumption about them.

The search continues.

Kitties

So, here they are. Turns out we got kittens who perfectly match our children's dispositions. The boy...had us in stitches last night, doing tricks, chasing his tail. He won't sit still for a picture. The girl... she hid, did not want to be held, and then screamed her head off once we put them in the spare room for the night. Today she is much more friendly. As Riley would say..."She just wasn't used to us yet." My kiddos are in love.

Jill Greenberg Quote

From the Paul Kopeikin Gallery website, Jill Greenberg explains, “The children I photographed were not harmed in any way. And, as a mother, I am quite aware of how easily toddlers can cry. Storms of grief sweep across their features without warning; a joyful smile can dissolve into a grimace of despair. The first little boy I shot, Liam, suddenly became hysterically upset. It reminded me of helplessness and anger I feel about our current political and social situation. The most dangerous fundamentalists aren’t just waging war in Iraq; they’re attacking evolution, blocking medical research and ignoring the environment. It’s as if they believe the apocalyptic End Time is near, therefore protecting the earth and future of our children is futile. As a parent I have to reckon with the knowledge that our children will suffer for the mistakes our government is making. Their pain is a precursor of what is to come.”

Okay...I understand the motive. The good intentions. I understand the pictures weren't meant to be enjoyed.

Still....there are plenty of children who are legimately suffering. Why not photograph them, rather than inflicting more suffering?

I guess I'm just not gonna "get it."

What The ____?

As someone who spends a large amount of time attempting to appease her child's cries, I can't imagine provoking children to cry, even for the sake of art (and I use that term loosely here).

I saw something on TV today about this photographer and when I googled her, these pictures came up from the Paul Kopeikin Gallery.

The photographer gave the children lollipops, then took them away...provoking the anquished expressions on the subject's faces. No, I don't think the kids are scarred for life by having a lollipop taken away for two seconds and then given back, (no matter how exploitative it is), but why would you do it? Who wants to see this? The only people I can think of who would want to look at these photos are pedophiles, and not just your everyday pedophile(I know there is no such thing) who is indifferent to the suffering they inflict, but the even more twisted, S & M,type pedophiles who actually get off on a child's pain.

I repeat...what the ____?


* Okay...so I've had a little time to process...and if one of art's purposes is to provoke emotion...well....this photographer has achieved that much. If the pictures depicted a child in a war zone, I'd be moved. This is certianly provocative....but still...why would you do it? What the ____?

Disappointment & Worry

So...we took our little trip to Nashville. We checked out a school for Riley. After her screaming fit during the admissions interview, they wanted to have a “trial” week in the fall. We can’t move our family to Nashville on a trial basis. So, she’ll start public school here, and we’ll make another trip to Nashville at the end of this school year for her “trial,” possibly giving it a shot next year. It was the nicest school I have ever seen and I do hope Riley gets to go there.

The school we visited is for kids with learning disabilities, with average to above average intelligence. Kids that are college bound. This school is one of the cream of the crop for learning differences, yet they aren’t sure they can deal with my very bright, very high functioning child?

If this school lacks the resources to cope with her....please tell me...what school will be able to accommodate her?

1 in every 166 children in our country has autism now. What hope do parents of autistic children have if even pricey LD schools lack the training and resources to deliver? The medical community has already kicked us in the chops. It refuses to acknowledge the true sources of autism, and does not put money into funding research for treatments. Parents are having to wing it, using their own children as guinea pigs in the process. Parents of autistic children are having to raise money to conduct medical research themselves. This is disgraceful. Medical insurance companies consistently deny benefits for therapies. The educational systems are swamped with the rising number of these kids.

Riley is too cognitively advanced to be placed with mentally retarded children in a special ed class, and too anxiety ridden to be placed in a typical class.

If I let it, this whole school thing sends me reeling into a very painful, very fearful place. The place where I wonder...is there anywhere in the world for this child?

I know there is.

I know we'll find it.

For now I'll just love her, and adopt kittens.

New Arrivals Pending

We're getting kittens! We're getting kittens!

-- Riley's is a calico...she named it Tanya.

-- Seth's is a silvery gray...he named it Sammy.

We bring them home tomorrow. I'm so excited!

For them.

Yeah...that's it,(for them).

I Smell A Big Fat Rat

Did I ever mention I live in Jerry Falwell’s home town?

Yesterday, a neighbor dropped in. She is sweet, kind, friendly. Her husband works at Liberty University, (Falwell’s college), and I have politely danced around the whole church question the handful of times we’ve been aquainted. "Oh yes, we're very happy with our church." Next subject.

My kids took her little son downstairs to the playroom delighted to have someone to show all their toys to. Todd happened to be down in the laundry room (bless his little heart) within earshot of the kids.

Riley: “ Look ___! Look at all my Teletubbies! Do you want to play Teletubbies with me?”

(Yay Riley! You actively engaged someone to play! You go girl!)

____: “I’m not allowed to play with Teletubbies.”

Riley: “Why not?”

_____: “I don’t know?”

Now, I didn’t personally hear the conversation. Todd filled me in after they left. I’m not certain of the reason _____ can’t play with Teletubbies? Maybe his parents just think the Teletubbies are stupid? I’ll give them that, but I smell a rat? A big fat one. Now,now....sweet neighbor....wasn't it Jesus who said, "Judge not lest ye be judged?"

Best case scenario....The Teletubbies are stupid. I have a deal for her? We give up the teletubbies if she gives up the very realistic wooden toy rifle she wheeled into my home strapped to her baby's stroller? If it's the other reason...the rat reason...she best just keep walking next time she's passing by.

What Not To Do or Worst Mommy Ever

When am I ever going to “get it?” When will I finally understand that even in the land of learning disabilities, my daughter isn’t typical?

We left Wednesday afternoon for Tennessee, to visit an amazing school for kids with learning issues. We drove til’ late, found a hotel and finished the drive Thursday morning. We arrived in Nashville around 11:00. It was sweltering hot. Riley’s appointment was at 1:00. After check-in and lunch, we drove to the campus, which was lovely.

We had prepared Riley. We talked about the teachers she was going to meet, going over their names, even looking at pictures on the school’s website. We explained that these ladies were her current teacher’s friends, and they were so happy to be meeting her.

When we got to the school, Riley’s hand gripped mine tightly. She was terrified. One of the women who was to evaluate her (for an hour and a half without mom), greeted us. She got down on Riley’s level, took her hands and introduced herself. Riley looked at the floor, and very sweetly, very articulately, said…”I’m not feeling used to you yet.”

We took a little walk up and down the halls while the teachers got things ready and then it was time to go to the office for Riley to do some academic activities. As soon as we entered the room, Riley saw the work on the table and I could see her worry wheels turning. Will I be able to do it? What if they ask me something I don’t know? I’m SCARED!

“I’m a little bit shy of them mommy!” she said.

Knowing they wanted Riley alone, I ignored her statement and told her, “I have to leave and I will be back in a very short time. You work with Ms. ____and mommy will be back very soon."

This might work with most kids. They might cry a little, but as soon as mother leaves they snap out of it.

Riley isn’t most kids.

Riley started to flip.

The teachers made a concession. I could sit in the doorway, with the door open, but by this point, Riley was too far gone. She was nearing hysteria.

“I’m not used to them!” she shouted, crying.

One of the teachers suggested a drink of water? We all hopped up and started walking down the hall.

As they went through some double doors, toward the water fountain, I made a fatal flaw. I slipped down the hall the opposite way toward the lobby.

I was hoping that in all the confusion…I was hoping with the walk distracting her……I was hoping with the drink of cool water…..I was hoping she‘d snap out of it, calm down, go with them, and get to work.

I was hoping she wouldn’t be Riley.

As soon as she noticed I was no longer with them Riley went into complete meltdown mode. She screamed bloody murder and I stood there, pressing my forehead into the brick wall, paralyzed, re-playing the scene in my head in fast motion. My God. She’s been traveling in a car all night, sleeping in a new place, more driving today, it’s 100 degrees, she’s never met these people, she did a good job of telling me she was scared, not used to them…..I completely disregarded her feelings and intuition….then I abandoned her in a new and scary place.

Screw it.

I walked into the room and no longer caring what these people thought, I scooped her up and said, “Riley. I’m sorry I left you. You told me you weren’t comfortable yet and I didn’t listen. I’m gonna stay right here.”

She looked up at me with her huge teary eyes and then buried her face in my shirt, clinging to me. After a few minutes, she calmed down. I was able to sit in a chair next to her while she breezed through the academic challenges they had in front of her.

I KNOW transitions are hard for my daughter. I KNOW she needs to be introduced to new situations slowly, on HER SCHEDULE, not anybody else’s. I KNOW this! So why…. after all this time…..am I still trying to make it different? Make her different?

When am I ever going to learn?

What?

We got back this evening from Tennesee where we checked out a potential school for Riley. My computer....sweet keyboard....how I've missed you!

I'm checking my e-mail. Todd asks...."Any comments?"

"Yeah...a few." I mutter.

"Anyone new?"

"Yeah, someone new linked me in a piece on her blog."

Clackity clack....type-itty-type.

"Her blog's titled 21st Century Lesbian Trailer Trash!"

Todd, takes Riley's cup from her..walks to the sink with it, smiling, shaking his head.

"Of course it is." He says.

The Family Comedian

Wiping Seth’s hands after lunch, I stop, and really look at him. He’s checking out his hands, assessing the damage from his peanut butter & honey covered apple slices. His dark hazel eyes are striking against his white blonde hair.

"Do you know how much I love you?" I ask.

Slowly...his right eyebrow rises. Then...a smirk.

"No you don’t? He sing-songs, grinning.

Whipping the wet paper towel onto the kitchen floor I say, "That’s it!"

He takes off squealing and I chase him. Catching up with him in the living room, I pick him up high and then fake body slam him onto the floor, tickling him mercilessly until he agrees to take it back.

Wisdom Girl

Yesterday, Todd and I attended a talk by Dr. Terry Cole-Whitakker. She is a motivational teacher, a minister, an author. She comes with numerous titles and amazing life experiences. The first thing she asked us to do was to make a list of anyone we hold grievances against, grudges toward, anger at, etc.

Among others, two biggies on my list were vaccine manufacturers, and their lackeys in our government institutions.

Dr. Cole-Whittaker’s presentation lasted over three hours, and at
one point during her talk, I caught a glimmer of something.

-What if I thanked the government and the drug companies for the journey autism has taken us on?

-What if we were to use all we’ve learned from the experience, as a launching pad to take ourselves further than we’d ever have gone?

-What if these sweet babies are not victims, but have volunteered for the assignment to take a whole generation of parents to a level of consciousness they never would have come close to?

-What if…….?

When my child is suffering, when I am suffering, it’s hard to hold onto these lofty designs. If Riley weren’t doing so well right now, would I even consider these ideas?

All I know is.... as we grow spiritually, Riley continues to get better. It’s as if she's on a sacred mission, and until her parents really “get it“ she must hold out. I've long thought of her as my teacher...but thanking the government? Thanking the drug companies? Giving up the victim mentality completely?

I think I'm just about ready. We’re getting there, baby.

Thank you, love.

Incentive!

If you hate someone, you'd better work on loving them, or else you'll be tied to them in your next life. You might come back twins!

- Dr. Terry Cole-Whittaker

Shut Up!

We are not allowed to say "shut up" in our house. Not that we ever did, but a girl in Riley’s old school got really freaked out by the phrase. In her house it was FORBIDDEN, and so Riley, ever the rule girl also gets VERY OFFENDED if she hears it(on TV) , reads it, (The Lorax), etc...

Thank God for Trevor.

Trevor you ask?

"Trevor" is our private, soft version of "shut your trap."

(Never to be used seriously, must be spoken in jest).

When we were first married, we lived in a great walking neighborhood. We went for long walks almost every evening. (It is still one of the ways we stay connected, though the walks are much slower now and Seth will move mountains to break up our conversations).

Back then, one of the houses on our street was rented by two guys. They were the best neighbors. Friendly. Neat. They had a tiny black dog named Trevor, about the size of a fist. Inevitably, as we walked by, the mighty Trevor would get in a tiz. He’d growl, circle, attempt to charge, and his owner...in a very serious voice, would talk him through saying...."TREVOR....DON'T... YOU....DARE.... SAY.... A.....WORD.

"TREVOR...! "

For ten years now Todd and I have been able to hush each other mid sentence by a sideways glare and a well placed, simple "Trevor."

Angelo Zuccolo

Look at that face!

Did you ever have a teacher that changed your life? In 1986 I was lucky enough to happen upon Angelo Zuccolo. He was the Director of The Little Theater at Broome Community College in Binghamton, NY. Oh, I was already an actor. My life had been all about acting. Acting like everything was fine, when in reality it wasn't. During my childhood, I would leave my house in the mornings, often in tears. Waiting for the bus, I'd put on my "mask" and ready myself for the day ahead, acting normal.

After high school, I continued to feign confidence, but I was truly terrified. Up until a month or two prior, when my boyfriend's father talked me into it, I had no intention of going to college (thank you Mr. Vieyra...two bachelor's degrees later....graduated with honors). It was just never presented to me as an option? Now, here I was, enrolled full-time, walking around campus without a clue.

Somewhere in this confusion, the theater called to me. In every other class I was on pins and needles. In the theater, I felt myself sighing with relief, letting my shoulders drop. I'd long ago put away my fun self, my silly self. Ange created a very safe place, and before long I was joining the rest of the class in a contest of who could do the craziest dance across the stage. My inner dork was cheered on and everyone loved her! As we became reaquainted, I started loving her too.

Outside of class, I spent many hours hanging out backstage. Upon entering the theater, I never failed to find a table full of students of all shades and colors, roaring over one of his "Italian" tales (he has a million of them). He'd pause in the middle of his story, eyes bright and welcoming, and yell, "How ya' doin?" whenever anyone entered. Everyone was welcome. Everyone was special to him.

During his 20 plus (?) years of teaching he touched the lives of many students. It wasn't so much that he believed in us, though that was certianly part of it. He somehow went beyond that, and convinced us to believe in ourselves. I've been fortunate enough to maintain a friendship with Ange over the last 20 years.

Today I post a poem from one of his books, The Ocean Rose. It's a book about love, lost and found. It's an especially juicy read for me, because although Ange is a great story teller, he's always kept his personal life private. Reading The Ocean Rose is like getting a glimpse into a secret, sacred place. His poetic range is vast and it's hard to pick just one. Okay...I'll pick two.


Magnificence

So many times I've held
gold and silver
precious gems
rubies
diamonds
sapphires
within the cache of my hands
books of rare ancestry
wines of treasured vintage
fabrics of cultures from far away
the touch of soft hands
and firm grasps upon mine
my fingers clutched
in the possession of values
beyond value
yet none of these
however desired
however compelling
however centuries sought
can or may or shall or will
approach within the measured distance
of the farthest star
the magnificence of
a father's newborn daughter
held in the protective strength
of hands created for him
for this very purpose
by the very first father
when the very best of values
were chosen to endure
forever.


Okay, go get your tissue, I'll wait.


Four For Dinner

We stood waiting.
Two young men
well-groomed
handsomely-dressed
discreetly-cologned
waiting
just outside the entrance
of the upscale restaurant which
they had recommended.
They two,
who would be arriving shortly.
Our guests for dinner
lovely
charming
articulate
with marvelous sense of humor
wise and interesting women
in whose company even we had learned
so much
of sharing
of consideration
of thoughtfulness
of laughter and joy.
Their arrival in an eye-drawing
sportscar
drew the approval of other men nearby.
Their confident walk to our side
highlighted by a tender kiss upon the cheek
accentuated the pride which we had always felt
since they had first welcomed us into their world.
They took our arms as we entered the restaurant
smiling brightly
strolling proudly
singing lightly.
Two young men
and
their
wonderful
wonderful
Mothers.

The Ocean Rose may be ordered directly through J.E.T. Creative Media (607)770-1355 or through Barnes and Noble. Angelo's other books are Remember! We Come From Good Stock! Italian-American Mostly Love Stories of the 1950's, and a second book of poetry coming out next month titled "Forty-four Poems in Search of a Long Black Dress." If you've ever been in love, if you've ever lost love, longed for love, or have experienced love of any kind....if you are Italian, know anyone Italian, or like Italian meatball sandwiches....these books are for you.

I'll sign off with one of Ange's favorite sayings, roughly translated into English..."If you're not a little bit crazy...you're not allowed in my house."

Ciao!

Atta Girl

So you know how we've been singing 70's theme songs in the closet? Well, I taught the kids the theme from Gilligan's Island the other day, ...and today, Riley ....being the born feminist that she is (I swear I'm not pushing her) sang....

"With Gilligan.

The skipper too.

The millionaire....AND HER HUSBAND......"

Bald Is Beautiful

Tim McGraw…I’m begging you. Lose the du-rag. Take off the hats. We all know what’s under there (or at least we suspect) and it’s time you stop living in fear of being exposed. I’m sure some music executive has played on your male insecurities, convincing you that you’ll lose the lady fans if you show your bald head.

Give us a little credit.

There are plenty of bald guys women find sexy.

-Bruce Willis.

-The guy from ER...not the short mean one, the other guy, the long timer….(though the short one might be hot if he wasn’t so mean).

-That friend of Ellen’s on the Ellen Degenerous show.

- Todd.

On our honeymoon I convinced Todd to lose the wisps he had left and go all natural. He claims it was the best thing that ever happened to his head. No fuss, no muss. Freedom.

Tim, it isn’t your hair that we love (clearly….since we’ve never seen it). It’s the physique, the popeye arms, the swimmer's waist, the chest, the muscular thighs. Oh…and the music.

Take it off Tim, take it all off!

If your fans abandon you, you still have me. Oh…and Faith Hill.

Closet Singers

You've heard of singing in the shower, but singing in the closet? In order to do the home piece of Riley's sensory integration therapy she has to look at a light box in a completely darkened room. The only place we could find dark enough is the closet under the stairs.

The light box sits atop the kid's coloring table, moved into the closet for the occassion. We have a big down blanket to sit on and lots of pillows for maximum comfort but still, it's a tight squeeze with Riley on my right, Seth to my left. We watch the magenta light blink on and off for 20 minutes twice a day.

I don't know how it started, but the sessions have become quite the singing fests. Seth usually gets us going with a rousing rendition of Down by the Station. Next, Riley indulges her current Faith Hill obsession with Mississippi Girl, followed by This Kiss. Show tunes are a given, "Raindrops on roses and whiskers on kittens"......and "Tomorrow! Tomorrow! I love ya, tomorrow!"

I used to be a singer. When I was a little girl I sang in the children's choir at church. In sixth grade I was one of only four girls in my school chosen for all- county chorus.

By junior high, singing was the least of my concerns. It got put away completely, until I was pregnant with Seth.

At that point, I auditioned for (and made)the Sweet Adelines. There were about three women my age out of approximately 50 in the chorus. The rest were darling senior citizens. The Sweet Adelines sing four part harmony and I was a baritone. Baritones come in below the leads, but above the base singers.

I soon found out The Sweet Adelines were hard core. It was all about the upcoming competitions and it would be fair to say that for most of these women the chorus was "their life." I just wanted to sing. I'd come in with the baritones, and then get sidetracked and wind up singing along with the leads. La la la! Who cares? This is fun!

Patti....group leader for the baritones DID care. I was her worst nightmare and soon she became mine. We had to tape ourselves weekly and then suffer a grueling critique.

At first she tried to be civil.

"It's not that you're off key...but you keep wandering over to the lead notes!"

Later.

"Not only are you NOT singing your part again...in this stanza you're pitch is off! Way off!"

As the months went on, I followed my "What To Expect" books, and was thrilled to know the baby was now able to hear. I imagined its first experience with sound emerging from the vibration of dozens of female voices raised in glorious harmonies. Our slow and lovely Amazing Grace never failed to bring tears to the eyes of our audiences. Goose bumps covered my skin each time I stood on the risers, singing in the midst of these beautiful voices.

As we headed toward competition the critiques got meaner and meaner. Sweet, my ass. These Adelines were crazy competitive! I was singing better, but having to practice 16 hours a week just to keep up with them! At this point, Riley was starting to show signs of her autistic spectrum disorder. She was throwing tantrum after tantrum and I was getting bigger and bigger. I was so tired. The Sweet Adelines were quickly losing their charm for me. I just wanted to sing, not be taken out each week by a "perfectly pitched" pit bull. After my first competition I politely bowed out, using the baby as an excuse.

So, here I am, four years later, in the closet. A couple days ago, bored with our usual repetoire, the kids asked for new songs. I took this opportunity to introduce them to my specialty...1970's television theme songs. Their new favorite is the song from The Jetsons. "JANE, STOP THIS CRAZY THING!" has become a household phrase.

Our time in the closet has reconnected us after two crazy weeks of running. Last night, when the light went off to signal the end of the session, I was in the middle of Lullaby by the Dixie Chicks. It's a slow, whispery song.

"How long do you want to be loved? Is forever enough? Is forever enough?"

"Time's up," I said.

"Mommy," Riley said softly. "Can you please finish?"

I smiled in the darkness and pulled them closer to me,inhaling the smell of their freshly bathed heads.

I continued, "How long do you want to be loved? Is forever enough? Cuz I'm never, never giving you up."

It was my best concert ever.

Prayer Request

My friend Michelle delivered her baby almost a month ago. He wasn't due til September. One day she's living her life with her husband and three year old, expecting a little brother in a few months. The next moment, life is forever changed. At less than two pounds, Carter has already had one surgery and Michelle and Cris have been prepared for the possiblity of more.

She is hanging in there, stoic. She's trying to keep life normal for her three year old. She's trying to be at the hospital as much as possible. She's trying to recover from an emergency C-section. She is trying so very hard. I've known Michelle for (could it possibly be 30?) years. Over the phone I hear her stiff upper lip. I also hear an unfamiliar vulnerability below it.

Be gentle with yourself Michelle. No guilt. You are a good mommy. God is tending to little Carter and holding you up at this time. Gentle, dear friend.



* If you are the praying sort, please send out love and light to the Casella family. Hold them in your hearts.

Foreplay

“Do you know how sexy it is when you say that?”

“What?” Todd replies, looking around for Riley and Seth, jiggling his keys.

"You just asked the kids if they want to go to Kroger with you.”

Sauntering up to him I wrap my arms around his waist, look him in the eye and slip my hands into his back pockets, giving his tookus a squeeze.

“Oh yeah?” He raises his right eyebrow, then moves his face closer to my ear.

In a whisper he says, “How would you feel if I told you I just put a load in the dryer?”

I suck in my breath. "That's hot." I say, as shivers run throughout my body.

"Later....I'm gonna fold it."

“Don’t stop....I love it when you talk dirty to me.”

Another Inconvenient Truth

Shocking!

This just in from the National Autism Association:

Dr. Eric Fombonne, an “expert witness” for the drug companies in thimerisol/autism cases has found in his new Quebec study that there is no link between mercury and autism.( Has anyone seen An Inconvenient Truth)? The study will be published in July's Pediatrics, and lazy doctors will read it and justify themselves and the tax payers and families of autistic children get screwed again. I mean really....what would you expect him to find? Who pays his rent?

http://www.safeminds.org/

http://www.nationalautismassociation.org

Speak To Me!

Flipping.

Nothing’s on.

I say something and Todd laughs. He thinks I’m hysterical. When he laughs, he does this noise. It's almost a cough, really. Like someone's quickly squished all the air out of him. It’s fast. It sounds like a cat making one swift attempt at removing a hairball. A small hairball. When he makes this sound, he smiles, and his eyes disappear into slits. He’s got the slits. That's where Seth got his. I LOVE EVERYTHING ABOUT IT. The laugh. The sound. The slits. The fact that he thinks I'm funny.

"What do you call that noise?"

"What noise?"

"That noise you make when you laugh."

I attempt to do the noise. I give a hearty quick cough and a "hee."

He laughs, making the noise perfectly.

"There...that’s it. How would you describe that? I mean...in writing."

"You wouldn’t." He glares.

I smirk.

He glares more.

Smiling, I raise my eyebrows.

"Maybe I’ll just stop speaking to you altogether." he says, shaking his head.

People Are So Nice!

Today on my way to pick Riley up at school (she's continuing with her amazing teacher this summer) two different people waved me through at two different intersections that are difficult to navigate left turns through. People are so nice!

Alcoholics Stay For Free

Well, not quite free, but cheap.

Today’s NY Times has an article about a federally financed program which provides housing to homeless alcoholics. From a purely financial perspective, it makes sense. The cost of subsidized housing is much cheaper than the cost of jail stays, homeless shelters and ER visits. The residents in this program have repeatedly been unsuccessful in rehab.

Some people are in a tizzy that the residents are allowed to drink while living there. If you had asked me ten years ago I’m sure I would have been one of them, "They don’t want to get better, screw em! Why should I have to pay?" I had little sympathy for addicts of any kind.

Smokers? Losers.

Drug addicts? Dregs.

I lived with an alcoholic father for the first 17 years of my life and I was hell on wheels mad (never mind that I turned to food every time an uncomfortable feeling came up for me).

In the movie Fried Green Tomatoes, one of the main characters, Ruth, walks a sweet old drunk out of her restaurant. He’s experiencing tremors and as they head toward his makeshift cabin, she puts her arm around him and slips him a bottle. No questions asked, no judgements. It was the kindest thing she could have done. This scene had a powerful affect on me, marking a shift in my black and white thinking about addiction.

These apartments aren’t the Taj Mahal. They merely allow people who are already down and out a safe place to stay, saving them the danger and indignity of sleeping on the sidewalk. Saving the tax payer money.

The real question is, would I want one of these apartments in my neighborhood? I may have come far, but the fact that I have to pause and think about this shows I’ve a long way to go.

Homeless Alcoholics Receive a Permanent Place to Live, and Drink

Sensory Integration Part II

Sensory Integration, Bolles style: Riley is now six.

"Is this what it's like?" All day yesterday the thought went through my mind. "Is this what it's like to not have a kid on the spectrum?"

Riley and Seth played all day without incident. Usually I hover about, micro-managing, because she just can't deal with the twists and turns of spontaneous play.

We completed the 12 day Bolles Sensory Learning program Friday and are continuing a home therapy piece for the next 20 days. It's much like the Berard Auditory Integration Program, but a bit more. A visual piece and a motor component are included in the Bolles therapy.

At first I was concerned. Won' t the child be overwhelmed with so much input? The director assured me it's just the opposite. She said the senses are so intertwined that it's actually more stressful to work one sense in isolation.

Okay. I guess that makes sense?

The child lays on a table that rocks gently back and forth. The headphones go on. There is a little box above the child's head with a circular light in it that blinks on and off in various colors. Other than the blinking light, the room is completely dark. It gives you the effect of a black light, (or green or magenta or orange) slowly fading to blackness and then coming on again. It sounds strange, but it was actually a very relaxing, womblike experience. The first day, I laid on the table with Riley, but after that she was comfortable with me just sitting in a chair beside her. My child that is afraid of everything would hop up on the table, ready to go. The sessions are 30 minutes and must be done twice a day with three hours in between.

The fourth day, in between sessions, I took the kids to a nearby park. Riley often has a hard time at parks. She is terrorized by the sound of kids screaming. She's afraid of them bumping into her, or crowding her on play equipment. She loves to swing, but will scream in a panic if a child walks in front of her, even with great clearance. Her visual/spatial system is not accurate and she is convinced she will hit them. "Get away! Get away!" she screams (not a great way to make friends). At school she sticks close to her teacher, too scared to interact with the other kids on the playground.

This park had two elaborate sprinklers that looked like showers. Each shower had four heads, and when the spray came on it was pandemonium. About 30 kids ages 7 on down were running through the water, shrieking with joy.

"Mommy, did you bring our bathing suits?" Riley asked.

Astonished, I said, "Yes, do you want to go in the water?"

"Yeah!" both kids shouted.

I hustled to the van, stripped them down and quickly put on their bathing suits. They ran toward the water. Kids were screaming! Kids were bumping her. The sun was bright! The water was cold! At one point the kids started to all run together around the periphery of the sprinkler area. Riley ran with them. Around and around in a gaggle of kids she was laughing and having fun! A couple of older boys got rough. She avoided them, but stayed in the play. She slowly backed up to the spray several times and smiled at her own bravery. I called Todd at work from my cell phone, lump firmly in my throat. As soon as I heard his voice, the tears came. Why didn't I have my video camera???

By day 7, we saw some things that troubled us a bit. She put toilet paper in her mouth, and stuck her foot in the potty! The director told us that sometimes during the program kids revisit developmental stages they may have missed. I thought about it and sure enough, Riley never went through an oral stage when she was a baby. I never worried about her putting things in her mouth (or the toilet, for that matter)!

Another new development, she's been teasing Seth mercilessly. She never quite got the concept of teasing before. She'd try. She'd walk up to him and say, "Seth...I'm teasing." But then had no game. Now, she's figured out plenty of ways to push his buttons and has also discovered her competitive streak, wanting to "win" at everything.

The little insecure girl that always clung to my hand is marching 20 feet in front of us on our evening family walks. She's strutting ahead with a total attitude, occassionally looking back just to make sure we're far enough behind her.

The other day, at yet another park, a child walked in front of her swing. Her body tensed, she grabbed the chains tighter, but then he passed. She looked at me and said, "Whew. I thought he was getting a little close." I had to restrain myself from jumping up and down with joy!

She's had a couple of meltdowns but has started to articulate her feelings during them. "I'm so mad! I'm so mad!" or "I don't like you, Mommy!" She never had words during these moments of frustration before.

Yesterday she came upstairs from the playroom dressed up like a princess. She's had dress up clothes for two years but has never worn them (too itchy, doesn't like anything pulled over her head). She walked down the hall and stood in front of the full length mirror, admiring her princessy self. Yesterday, when she played with her brother for three hours with no screaming. I walked around the house, not sure what to do? This is what set my mind to wondering, "Is this what it's like?"

I've been in the game long enough not to jump to any conclusions that she is "cured." Today she did scream a couple of times, but not like she used to.

Is her sound sensitivity gone? I'm not sure. Even if it is, I know it will take a lot of work to untrain the fear that is associated with certain noises. For now, she definately seems more secure, and better able to cope. The program director said we can expect to see progress for months to come.

Was it expensive? Yes. Very, and not a cent covered by insurance. Was it worth it? Yes. Very. The day under the sprinklers alone, was priceless.

http://www.sensorylearning.com/

Sensory Integration Part I

Berard Auditory Integration:


Imagine someone placing a metal garbage can over your head. Next, they take a metal spoon and start banging hard and fast on the can. How would that sound? How would that feel in your body? This is the best description someone gave me for what it feels like to have the hypersenstive hearing associated with autistic spectrum disorders. This explained why my daughter would fall to pieces over the sound of an adult sneeze. This description many times, though not always, has allowed me to pull out my reserves of compassion, when what I've really wanted to do is tell her to "shut up and deal."

Three years ago, we did a round of Berard Auditory Integration Therapy. We were hoping for a reduction in her debilitating sensitivity to sound. There were no gaurantees and we had no way of knowing if we were being conned out of $1500 dollars. Desperate to help our baby, we decided our intentions were good, it was a non-invasive therapy, and if we were being conned, it was for the highest of reasons. We could live with it. It was a ten day program that required Riley to listen to headphones twice a day. Music filtered through a machine somehow takes the inner ear on an intense exercise program that retrains the auditory/vestibular processing system.

When we started the program, Riley was three and a half, and she woke up every morning shrieking. The mere act of waking from sleep was traumatic for her. At that point, I could no longer remember a time when her screams were not my alarm clock.

We were living in Maryland, and the therapy was in Northern Virginia. In order to beat rush hour in both Baltimore and DC we were leaving at 5AM. Halfway through the Berard therapy, I tiptoed into her room in the morning darkness, bracing myself for the screams.

I put my hand on her shoulder and whispered, "Riley."

She rolled over, smiled sweetly at me and said, "Hi Mommy." That was three and a half years ago and she hasn't woke up screaming since.

During this therapy, we saw huge improvements in Riley's balance. This child who would fall of the kitchen chair during meals, who hadn't quite mastered eating with a spoon yet, who fell off the potty all the time, was suddenly able to walk along a curb. Where previously she had no reflex to right herself, overnight she was able to jump on a trampoline. These gains have been permanent and we are thrilled with them, but sadly, the sound sensitivity, while perhaps lessened a bit, has remained. These lasting gains were well worth the money we spent, but the search continued.

http://www.autismwebsite.com/ari-lists/aitus.html

What's Your Idea of Heaven?

In the film, What Dreams May Come, directed by Stephen Simon and starring Robin Williams, heaven is revealed not as one place, but many places, as varied as the souls entering. My idea of heaven is under a shady palm tree on a tropical beach. Someone else’s idea might be an African safari. Whatever you want, you get. Reality is subjective, like it is here on earth.

My kids are still mourning the loss of their cat Crystal. This morning, Seth asked me to draw him a picture of Crystal in the forest (where she died) and he wanted me to add The Wiggles, floating around her like angels. It occurred to me this is Seth’s idea of heaven. Wiggle angels carrying you off to a peaceful place. I drew the picture for him and one for Riley, but her angels were The Backyardigans. As I write this, they are at the dining room table, chatting away, coloring their pictures.

The other day, we were at Barnes & Nobel and we read a book called Cat Heaven. At dinner that night, Riley said to Todd, "Daddy, the author thought God was an old man with a white beard and a mustache." She shook her head as if to say, "silly author."


I flashed back to a time when she was four and she asked me, "Mommy, is God a man?"


I was tucking her into bed and we had just said prayers.


"I don’t think so sweetie. I think God is an energy. God is all the love in the world. It's bigger than male or female."

"Then why do we call God a he?"

"Sometimes it just helps people to think of it like that. God's easier to imagine that way."

"Can I call God a she?"

"If you want to."


Sometimes at church she switches the gender in the hymns, but just as often she doesn’t. I smile thinking of this. Where does this kid come from?


Soon they are running to me where I sit at the computer, holding their pictures behind their backs.

"Mommy, we have a surprise for you so close your eyes!"

I close them.

"Open your eyes!" They chime proudly.

I open.

They hold their pictures out in front of them, excited. They are so beautiful. Riley with her huge eyes, dimple in her right cheek. Long brown hair with bangs cut straight across. Seth with his touseled golden hair. A huge smile on his sweet little face. My kids have the chubbiest cheeks in the world. The cheeks alone kill me. It's almost noon and they're still in t-shirts and underpants. Nowhere do we have to be today.


Forget that shady palm tree. With a view like this, who needs it?

The Spiritual Cinema Circle

We just watched a very inspiring film called Emmanuel’s Gift, brought to us courtesy of the Spiritual Cinema Circle. Emmanuel is a young man that has changed the face of the disabled in Ghana. Emmanuel’s mother was instructed to "send him off" when he was born, which meant abandon him in the woods or kill him, because he was born with a deformed leg. His mother refused to "send him off" and his father subsequently abandoned the family. Emmanuel's mother raised him to be proud of who he was, and forbid him to beg, as most disabled people do in Ghana, due to social stigma and lack of opportunities or support.

Todd and I were blown away by Emmanuel’s presence. His sheer faith in his own worth and his determination to help others was moving. This is the kind of film we want to be watching. The kind that changes you. The kind that makes you want to be a better person.

Enough violence and gratuitous sex. Enough terror and killing for entertainment. Each month we get a DVD in the mail that includes two short films, a documentary and a feature. With our schedules, (and with how tired we are by the end of the day), it takes us about a month to watch them all. It's perfect for those of us who don’t get out much, and cheaper than Blockbuster.

One of the short films from last month has stayed with me. It is called Dysenchanted. A bunch of female fairy-tale characters are sitting in a shrink’s office for a weekly group therapy session. Jim Belushi is the therapist. All the characters have their issues, for example, Goldi-locks has OCD, (everything is too big, too small, etc.). In walks an everyday mom, frazzled and disenchanted with her life. She thinks this group isn’t for her, but turns out she’s not so different from the other characters after all.

The Spiritual Cinema Circle. Twenty-five bucks a month. I highly recommend it. Raising consciousness, one film at a time!

www.spiritualcinemacircle.com