Teacher Professor

June 30, 2010

Handful of Light

Filed under: Exceptionality issues — Teacher Professor @ 11:13 pm

from Google images- Rutgers University

Tonight, we discovered “Sea Pansies”.

Sea Pansies are small creatures that bioluminesce- they are the fireflies of the sea.  They look like sand and you can’t see them at all in any sort of light.  It has to be dark.

We went on our own Turtle Walk tonight- trying to find a sea turtle nesting.  We’re determined.  So, we set off at 9:30 at night- Jack and Ray, Jack’s parents, Elizabeth and Emily- armed with red light sticks, because the sea turtles can’t see red- and white light scares them.

It was a bit different than a few nights ago because we weren’t following anyone; we weren’t depending on anyone else to tell us what to look for.  The boys had one light and ran all over the place, looking for tracks; the girls lagged behind, talking and swirling their light around; and the adults tried to keep an eye on all of the activity.  We walked.  And we walked.  No turtles- although we did run into the Georgia Sea Turtle  Center  Turtle Walk and they didn’t find anything either, but reported that there were six “false crawls” last night- which means that there are at least six turtles out there who are wanting to lay eggs at any moment.  And so, we walked.  We strained our eyes, looking for tracks and large masses of dark.  We were looking for turtles.

All of a sudden, Ray gasped and turning off his light, scooped up a small patch of sand, to find that a small dot, about the size of a pencil eraser was glowing in his hand.  Compared to the “sparkles” that we caught glimpses of the other night, this thing was sizable- big enough to hold and to carry.

The cold, blue/white light of the creature was magical, sitting in his palm, lighting up his hand.  We turned on the red flashlight to view it up close, and it would vanish, looking just like a piece of sand, completely indistinguishable from the other sand chunks on his hand.  Turn the red light off, and his hand lit up like he was holding a fragment of a star.

We asked the guide of the tour nearby what it was called, and she said a “Sea Pansy”.  Not quite the name I would have picked, but then “Sea Star” is taken, and “sea creature that looks like sand but glows” is probably too long.  And all of a sudden, our mounting frustration vanished and was replaced with awe.  We started finding more of them and even found a small colony on a shell- little bits of glowing light all over the beach.  Apparently, the storm today had stirred up the sand and brought them in.

And I thought of how so many of our children’s gifts are hidden- how disability and behavioral problems and harsh sunlight obscures the magic and the marvelous.  How sometimes we need a fresh view, a little bit of night, a different perspective- even a storm or two.   How you sometimes have to deviate from what you were looking for and admire what you find. How our frustration can vanish as we marvel at what they’ve become.

How you can think you have ordinary sand and in reality, you have a shining handful of light.

June 29, 2010

Walking in Dim Light

Filed under: Autism — Teacher Professor @ 3:46 pm

from Google images- Exzooberance

We had a really interesting experience last night.  We went on a Turtle Walk.  During the months of May- July, the Georgia Sea Turtle Center takes people on a guided walk on the beach, along with the Turtle Patrol, to look for nesting sea turtles.  The goal is educational- to teach people respect for sea turtle nests, to allow us to marvel at the instincts and power of the turtles.  How they have little bitty brains, but they know exactly how to be a sea turtle.  How they find just the right place to lay their eggs.  How they make it safe for their little ones. To grieve at the statistics that 1 in 4000 sea turtles will live to adulthood.  To marvel that sea turtles have remained essentially unchanged since the time of the dinosaurs.  All of this at 10:30 at night.  In the dark.

And I mean dark.  There was no moon last night because the sky was overcast and there is a light ordinance on Jekyll Island.  I got yelled at when I turned my phone on to check the time.  So, there we were- Jack and his parents, Vicki and my two, along with 20 or so others, strolling along the beach in oppressive humidity- in the dark.

I was thrilled.  My senses were on high alert.  I could feel how large my pupils were and how the ocean gleamed with its own light.  I could hear the sound of the waves right next to us and the low rumble of thunder in the distance.  I could feel the heavy feeling of humidity and the cool breeze stirring my hair.  People talked in hushed tones and we were very aware that we were witnessing something that was beyond thought, something that is as old as time.  It all created a wonderfully wild and magic night.

Jack and Ray walked together at times, and at time Ray came back to me to hold my hand.  He was very curious and asked lots of questions.  He wanted to know everything.

And Elizabeth- my poor Elizabeth didn’t understand.  She didn’t know what to make of it.  She was tired and she was hot and she was bombarded with sensory information that was new and different.  I was struck when she sidled up to me and said “I’m scared, Mommy.”

“Oh honey- I’m so sorry,” I said, putting my arm around her.  “Can you feel how relaxing this is?  People buy noise machines just to have this sound.  Your noise machine does this.  Can you feel how calming it is?”

“No,” she said and we walked, holding hands.  I learned to alert her when the sand conformation would change- when there would be a hillock or a depression- so that she didn’t trip.  She could see them in the dim, but couldn’t make sense of them, didn’t realize she would have to change her footing.  So, I became her eyes.  After a while, she relaxed and we talked quietly about sea turtles and about how annoying the cheerleading conference attendees, also out on the beach, were being and how they were probably scaring the turtles.  How anxious and excited the mama sea turtles must be.  How we didn’t see any turtles and how sensitive nature is.   How power conveys responsibility.

I was struck at how she needed me to translate the experience for her.  How she needed to know what it was that she was “supposed” to be feeling.  How she was depending on me to “see” it for her.  How she relaxed when it was made safe for her.  How she grasped the big ideas once she processed the sensory. 

After a half hour walk up the beach, we stopped and our guide showed us some amazing “night beach” things- the sparkles that you can find on a dark beach at the waters edge when you dragged your foot across the water-filled sand.  The smallest creatures that had “bioluminesence” qualities.  She recreated this experience for us as we crunched wintergreen mints in the dark and watched small fireworks in each others’ mouths.  On the way back, people walked more slowly and we all looked for sparkles in the water.

And Elizabeth started getting tired and overwhelmed, which made her whiny.  “I’m tired.  I’m hot.  Do you have water?  My feet hurt…”

I took her hand and said “I know you’re tired, honey.  I’ve learned that if you pay attention to bad stuff, that’s all that you see.  But if you pay attention to good stuff, it shoves the bad stuff out of your head, and that’s all you see then, too.  You’ve told me some bad stuff.  Do you see any good stuff?”

“No,” she said. 

“Well, I can feel how cool the breeze is, and I think it’s kindof cool that there are sparkles in the water, and I really like the sound of the waves.  Is there anything at all that you can think of that’s good right now?” I asked again.

“Yes.  You,” she said.

And we walked along, hand in hand, both of us feeling the love that comes from holding hands on a hot summer night at the beach.  I didn’t need to find a sea turtle to feel the bond of  parent and child that is older than time.

June 28, 2010

Wild Places

Filed under: ADHD,Home Things — Teacher Professor @ 11:08 pm

Jack is in town and we’re playing tourist in our area- always a fun thing!

We took a ferry over to Cumberland Island– one of the few National Seashores.  It’s an enormous island and the only association I had before today was that it was the site of JFK Jr’s wedding.  The entire island was owned by the Carnegie family around the turn of the century, and so it never got significantly developed.  In the early 1970’s, the remaining families kept some rights, but transferred property to the National Park Service- which makes it an almost pristine island.

And it’s magnificent!  There are no wheeled vehicles allowed, except for bikes you can rent (which we did not at $16 each!) and it’s only accessible by boat.  There are no trash cans, so you are to bring your stuff in and take it all off.  The live oak trees are absolutely marvelous- craggy and dripping with Spanish moss with palmettos underneath.  And it’s quiet- only tree frogs and butterflies the size of small plates who come to investigate you and flutter around the bags we carried.  We hung out at the beach and then walked and walked down a road of a long arch of trees in the rain that was the same temperature as our skin, so that it wasn’t cold, but not hot.  Best walk in the rain I’ve had!

The beach was stunning.  We felt as Columbus must have- coming off the beach into the quiet, drippy forest that wasn’t as dank as I expected and dappled with phenomenal light. But we were most amazed at the wildlife- truly wild.  There are wild ponies on Cumberland- ancestors of horses who were shipwrecked from Spanish galleons hundreds and hundreds of years ago.  They looked like- well, horses, but scrawnier and tougher- and they left hoofprints that had never seen a horseshoe.  They were very peaceful and playful- truly wild and free.

And we saw manatees, wrestling in the water, a mama, a calf and another one- Daddy?  They were in six inches of water and mud, right off of the dock, either playing, scratching off their barnacles, nursing, or all three.  We stood in the rain and watched them for over half an hour.  They were very peaceful and playful- truly wild and free.

And best of all, Jack and Ray played in the water, jumping the waves, over and over again.  They would charge the wave, and jump as high as they could before it would crash against them, and then run and do it again.  They were peaceful and playful- truly wild and free.

Cumberland Island is a haven for all kinds of wild creatures to feel safe.  And to play…

I’m so glad places like this still exist.  I wish there were more… support the National Park Service

June 27, 2010

Waiting for Godot- er, Jack

Filed under: Home Things — Teacher Professor @ 4:53 am

Ray enters, with one shoe on.  The other is… who knows where.

“There’s nothing to DO!  Mommy, where ARE they?”

“North of Atlanta.  Six more hours.”

pause, pause.. Elizabeth enters.

“Mommy, how much longer?  There’s nothing to DO!”

Jack is coming, Jack is coming… We’re all rather excited about it.

June 25, 2010

Birthdays and Walls

Filed under: ADHD,Tourette's Syndrome — Teacher Professor @ 5:43 pm

Yesterday was my birthday- and it was… compartmentalized.  And very, very sad that I just won’t let myself dwell on or I will give in to sorrow.  Can I vent?  Can I just pour out my hurt and my despair and trust that you won’t judge- that you will listen? 

We had an appointment with the pediatric neurologist for Ray yesterday- on my birthday- the neurologist who had recommended Daytrana for Ray’s ADHD.  I walled away my anxiety about going- focusing on my teaching, my fun green outfit, talking to my mother.  We were crabby about going, because the medication has had… mixed results. 

There was a little girl– ok, boy

Who had a little curl

Right in the middle of her -his- forehead

And when she– he- was good, she– he- was very, very good

And when she– he- was bad, she– he- was horrid.

When the medication is working, during the middle of the day, Ray is great.  He’s focused, charming, funny and writing poems.  And when the medication is wearing off, he’s awful, awful, awful.  Worse than not on medication.  Awful.  And it takes three hours for the medication to wear off.  Awful.  Irritable, right on the edge, and sometimes falling off of control, hurtful and sensitive.  I mean- awful.  And the medication makes his Tourette’s worse.  Like very much worse.  Like he’s spitting, which despite my best intentions, just totally grosses me out.  When the medication is working, he’s in charge of his Tourette’s, and when it’s wearing off, it’s awful.

So, we told the doctor that while we kindof liked it, we really didn’t like what else it did.  Was it worth it?  We weren’t sure. 

So, she put him on a medication, Clonipine, to help with his Tourettes- similar to the guanfacine we had originally wanted, but “with less dopiness”.  Good?  Is this what we want?

On the ride home, James and I talked- about how we feel boxed into the medication route, but that we didn’t know enough, we’re too involved as parents.  We don’t feel we have good access to therapists here- we’re driving 2 hours one direction just to talk to this one neurologist.  Are we grieving and don’t want to accept this?  Is this a small problem that you throw a couple of pills at and all is well?  Is this a major problem and we need to treat with lots of therapy?  Are we making too big  of a deal out of it?  Should we do something now before it gets to be a big deal?  So many questions- and no good answers.

And therein lies the rub- I’m a professional.  I can help other children.  But my own child… my own child- all of my professional knowledge and skill goes out the window.  And Ray doesn’t see me as a professional to help him- he sees me as Mommy.  Mommy to love and Mommy to fight.  Mommy to argue with and Mommy to hug.  Mommy who doesn’t know anything, but knows too much.  Ahh- the dual nature of Mommies.

And so, on the long, long ride home from the doctor, he fell apart.  He started saying horrible, mean things- things designed to hurt.  “How dare you!  How could you drug me?  What kind of mother gives her child something make him sleep?”

“Wait a second!” I defended myself/us/our decisions.  “This medication is for your Tourette’s.  It makes you sleepy, so you have to take it at night.  But if you don’t want it, I’m not going to make you take it.  This is just to help you with your Tourette’s.”

And during that long, long car ride home, he wobbled back and forth between shrieking that we were too noisy, we were talking too much, the road was too bouncy, leave him alone- and lashing out at his sister who was teasing him, who was pestering him, who was in reality, sitting there quietly, playing with her own game, her own string, humming-lost in her own retreat.  Autism as self-protection.

And as we waited at Sal’s Pizza- the best pizza in the world where our friend Vicki was meeting us, he stood sullen, asking over and over, “Why can’t we go home?  Why do have to wait here?  It’s going to be 30 minutes of waiting- we need to go home NOW!”  Fixated on going home.

At Sal’s, we ordered pizza and breadsticks- trying to get some food into him- all of which he refused, adding hunger to his mix of misery.  He “agreed” to take one bite of pizza, which did turn into 1/2 a piece, but all through out the presentation of the homemade apple pie Vicki brought me for my birthday dessert, and the funny book and oh-so-sweet card James got for me, he glowered and hmphed and growled and sighed.  He did sit.  He didn’t make a scene.  He did play quietly with his pizza dough. His anger was absolutely directed at me, at us, at his resistance to our decisions- at his Tourettes and his anxiety and our defining it as a problem.  I walled out my own anger, my own frustration, my own feeling of inadequacy in the hubbub of the pizza place. I ate three slices that might as well have been cardboard.  I smiled.  I chatted with Vicki.  I made small talk with the waitress, who wished me “Happy Birthday”.

And when we got home after a long day, with birthday party preparations, he slammed the door to his room.  James went in when the candles on the apple pie were lit (the 4 and the 3 from the children’s collection) and asked him to come out- “NO!” resounded throughout the house and the door slammed shut- again, for extra emphasis. 

I know, I do truly know that he was “going to ground”- that it was his way of handling stress, of feeling “less than”, of coping.  But as the (off-key) “Happy Birthday” was sung by my daughter, my husband and my good friend, I ached that my son was not/could not be there.  I was not going to let him control the situation- I knew that he needed to know that the structure of “home” was something that he could depend on, I knew that he had to learn to calm himself down and that any drama would feed right into his rocky sense of insecurity.  And so, I laughed and smiled and accepted the good wishes- and walled off the grief.

I bent down to blow the candles out, and in addition to the general “Health, Wealth, and Happiness” that I always ask for, I added “And please help Ray this year”.  And I walled it away and laughed with Vicki and ate ice cream and pie and pretended all was well.  Which, it was, in a way.  Last birthday, I was by myself, teaching in KY while my family was here.  The birthday before that, James was in CA.  At least this birthday, we were all together, facing it together.  There is strength in that.

Ray- finally- came out of his room at 10:00pm- an hour past his bedtime.  He came out to ask for the new medication, to ask for help, to ask for a hug.  I asked him if he was sure- if this is what he wanted to do and he said “Yes.  I want it to go away”. 

“It won’t go away,” I told him.  “This is just to help your body regulate it”.  And he chewed it up with an expectant look on his face. 

I held him close- and the walls that had held up all day- his and mine both, finally cracked.

June 24, 2010

Ray’s Birthday Poem to Me

Filed under: Home Things — Teacher Professor @ 10:47 pm

I- Inteligence

L- Loving

O- Obstraprous – sometimes   obstreperous- !!?  A word he learned from his second grade teacher- and one of his favorites- and I’m totally snickering at the “sometimes”

V- Violet

E- Eggs- make good ones

M- Music

O- Obtimsc   optimistic- well, true, and can you believe he knew the word!?

M- Mommmmmyyyyy

sniffle… truly one of the best gifts EVER!

June 23, 2010

Baby Steps and Barbies

Filed under: Autism,Home Things — Teacher Professor @ 12:00 pm

Elizabeth’s room is in a state of disaster.  It’s small, true, but she’s gotten to the point of not having anywhere to put the things she’s got.  We’ve been fussing at her for weeks to “Clean up your room” until last night, in a flood of tears, she said “Mommy, there’s no where to PUT anything!”.  I looked around and realized she was right.  Boxes were piled on top of Barbie planes next to the dirty clothes basket next to a pile of shoes.  “Take out everything from my closet, Mommy,” she said.  “I’m too big for that stuff anyways and I don’t play with it.”

So, today, I hauled out three of my big black trash bags- the ones that mean business. One for trash, one for Goodwill, and one for the garage to store.  And I waded in.

Some thing were easy- the old math workbooks, stashed in the closet so I wouldn’t remember them?  Trash.  The stashed peanut butter crackers where she then forgot them?  Petrified now?  Ewww, trash.  I even recovered some things of mine- the pink purse that I got in Greece.  The Spanish mantilla.  The random baby dolls acountremonts- bottles and brushes and food dishes?  Goodwill.  The pink princess doll that our kind landlords gave her as a going away present when we had to leave unexpectedly because James’ contract wasn’t renewed?  That went into Goodwill, with a thought for past hurts and past kindnesses.

But the rest- the rest is where I  find that it isn’t Elizabeth who’s been unwilling to get rid of things- it’s me.  The old Disney Belle dress-up dress, that Elizabeth wore to a rag because it was really too small for her when she discovered the joy of dressing up- Goodwill, where I’m sure that they will throw it away.  And how on earth can we give away the giant Nahla and Simba lions, the ones that our friend Dennis gave her when she was 2 and Ray was 1, the ones that she and Ray used to race each other on?  The ones that I didn’t take pictures of them with, because they invariably chose dinner time to ride around on the backs of the lions?  The lions that they haven’t sat on for about 2 years now.  The lions that have been relegated to the back of the closet.  They went into the Goodwill bag.  Hopefully, some other children will ride on them, too.  Of course, “Lion King” isn’t “cool” anymore, but, but… I can recommend them for racing around the savannahs of Africa.  Nahla is a little bit faster.

And the baby dolls.  The tons and tons, ok, ten, naked baby dolls that Elizabeth has been fixated on for years and years, until it was way past time, developmentally, for her to be playing with baby dolls.  The ones that are symbolic  of her autism and how she deals with it.  The big one with dark hair that she carried around since she was 3- didn’t play with, didn’t know what to do with, but carried.  She would watch other little girls and she would mimic their actions- and so, the dark-haired doll, intermingled with other countless nameless blonde babies, was brought with us everywhere, because that’s what you do.  Later, the baby doll got pushed in strollers- an endless stream of strollers because Elizabeth loved the action of pushing.  The baby doll with no name because Elizabeth didn’t know that you were supposed to name them.  The baby doll that she started to dress when she was 6- and we bought “real” baby clothes for from the grocery story- faded pajamas that were already in the bag.  The baby doll that just last year she started to play games with- the one who Elizabeth finally found a voice for and who  “cried” while Elizabeth lavished her 7-year-old love on her.  The one we bought “real” diapers for so that Elizabeth could care for her.  Naked now, she sat under a jumble of too-small clothing, with her filthy face (4 years of being carried around takes its toll on you) and her ratted hair.

Tears slipped down my cheeks this morning as I put Dark-Haired Baby Doll, still nameless and only identifiable by its hair, in the Garage bag.  No one from Goodwill would love her or track a child’s development like she did. So much of my worries, my sadness, as I watched my girl grow, true, but hit developmental points later than other little girls, were bound up in that doll.  Grief and amusement and a lot of love are in that bag in the garage.  Goodwill doesn’t get that- yet.

And now, Elizabeth has announced that she plays with Barbies.  She’s 9 now, so she’s a bit late to love Barbies, but apparently, Barbies are a developmental step after baby dolls.  Of course, this step was precipitated by her receiving a bunch of Barbie dolls from Emily, who is outgrowing them and making room in her own closet, but can still play with them if they’re housed at Elizabeth’s.  What amuses me is that none of the Barbies have names either, and how she pushes them around in the Barbie Corvette.  How it is the little ones, the Barbie “baby dolls” that she’s lavishing her attention on.  They may not be her baby dolls, but they’re Barbie’s and that makes it ok to still play with baby dolls. And so, now I get to be amused at Elizabeth’s antics with the Barbies, and I get to grieve and marvel- again- at how she is just a step behind, how her play is changing, how she is growing.

And so I bag up my baby’s past, and I replace it with her present.  Because babies grow up, even dark-haired ones.

June 21, 2010

The Power of One

Filed under: Autism — Teacher Professor @ 12:09 pm

We are always encouraged to go ahead and just do it- that one person can make a difference in the world. “Indeed,” as Margaret Mead noted, “It’s the only thing that has.”  Margaret Mead was one person who changed our views of culture.  Einstein changed our views on space and time.  J. Craig Venter is changing our view on the definition of life.  Terman changed our view of intelligence.  Newton changed our view of gravity.   All movements forward that lead to greater and greater understandings.  All who added to the knowledge that was then further developed.

And sometimes, one person can have a whole lot of…impact.  Paris Hilton has changed our view of fame to… just showing up.  McDonalds changed our view of food to… fast.  Edward Bernays changed our view of psychology to one of… public relations and advertising. 

Andrew Wakefield has, almost single-handedly, changed the conception of autism. 

As almost everyone in the autism field knows, and many, many parents are aware of, Andrew Wakefield was a physician in England looking for reasons for the skyrocketing rates of autism.   He, and 12 others, issued a paper in 1998 in the medical journal The Lancet that looked at laboratory results of 12 children with autism.  It is enlightening to read the original paper.  Although no definitive linkages between the MMR shot were found, they documented the memories of 8 of the parents’ concerns regarding the timing of the children’s onset of autism and stated that it appeared to occur near the same time as immunization, or after a fever that occurred at the same time of the shots.  The group also noted that gastrointesinal issues appeared to occur at the same time for 11 of the children, and that there was a possible linkage between the shot, the autism, and gastrointestinal issues.  Dr. Wakefield and his co-authors then recommended that the triple MMR shot be given in three separate doses spread out over time, rather than the single dosage and that further study be done on the impacts of the triple shot. They did not, at any time, recommend withholding immunizations completely.

And all hell broke loose in the autism world. 

The government in England flatly refused to consider breaking up the shot, stating that there was more possibility of  outbreak in the intervening time than any issues associated with autism.  Families around the world seized on immunizations as a way of controlling autism and rates of immunizations decreased sharply, even as the rates of autism-and probably not coincidentally, measles- continued to rise.  Hysteria on both sides rose, as the medical field dug their heels in and refused to consider any changes in the immunization schedules and the conspiracy theorists for autism claimed it was all a government plot. 

I am amazed at the hysteria on both sides, particularly when, as a researcher myself, I know the level of scrutiny that I have to pass and the level of ethics that I have to follow.

Just the facts are damning.  The twelve children’s medical records from their previous doctors did not match the medical records presented by the lab.  Before his study came out, Andrew Wakefield was paid £400,000, or something close to $600,000 by a law group who were in the process of suing the British government for negligence over the immunizations- and the 12 children’s parents were part of this law suit.  In addition, his lab was in the process of formulating a single-dose immunization for measles.  Finally, one of his own graduate students said that data from the children’s gastrointestinal tests that did not support his hypothesis were thrown out.  There were clear violations of ethical and independent research standards.

I want you to think about this- all of this hysteria, the lawsuits, the fear around the world that has come out of flawed data from 12 children and one ethically-challenged researcher.  Even if you think he was set up, even if the other researchers were pressured to change their views, even if the drug companies are in cohoots with the governments, even if he was right– all of this comes from one source.  One source.  One.

There have been,  of course- because of the hysteria, efforts to replicate his findings.  We have found some tremendous things as a result.  There have been some evidence that seizures are related to autism. There is some evidence that the same protein that regulates brain development regulates gastrointestinal health, although not necessarily directly related to autism.  There have been a number of studies in countries around the world dedicated to finding the same results, only to fail… All of these studies could not, did not, have not found a link between immunizations and autism.  There has been a tremendous amount of research on autism over the last 10 years, and because of one person’s impact, a large amount of research has gone into dispelling people’s fears. 

All of those questions- Does diet work?  What is the role of mercury in the environment?  What genetic triggers are there for autism?  What are the environmental triggers?  How does autism impact the other bodily systems?  What  are some effective treatments?  How much could have been done if resources had gone into finding something productive, building on someone else’s research rather than trying to dispell findings from one study?  One study.

It is also important to know that to most of these researchers, who are toiling away, and certainly not making $600,000 for a single study, autism is a very, very personal area of study.  “Research is me-search” said Bob Sternberg, a very influential psychologist.  Those faceless, nameless researchers in the field of autism are studying it because they care.  Because they too, want to know.  And their results- even the puzzling, conflicting ones- are, most of the time, small incremental steps towards fighting… towards curing … towards coping with this- this thing, this disease, this condition, this way of being.

A friend of mine who is an expert in so many things, notes that a virus hurts its host, not because of anything that the virus actually does, but because of the immune reaction that is produced by the host.  In other worlds, it’s not the cold virus that makes you feel yucky, it’s your own body’s reaction to the presence of the virus.  Your own body is what is hurting you, not the actual virus.  The response is more important than the actual event.

I know that parents tell stories to each other of how their child was triggered by immunizations.  I know that it makes sense.  I know that experience makes a “truth” so much more than a research study with lots of numbers and formulas.  I happen to believe that chiropracty made a difference in my child’s autism because I saw, I SAW the difference afterwards.  But I do not tell everyone to go and try sacral-occipital therapy because it worked for my child.  I would want them to gather data and make a decision that works for their child. 

Because the power of one has to be balanced with the experiences of many.

June 20, 2010

Daddies and Papous and Dampas- Oh My!

Filed under: Home Things — Teacher Professor @ 9:01 am

Fathers, be good to your daughters
Daughters will love like you do.
.. John Mayer

We have an odd collection of daddies around here… Mothers we have in direct line- Mother to mother to mother- a straight, unbroken line of matriarchy.  But Daddies- we have an unusual collection…

First up- leading the line- is James- Best. Daddy. Ever.  Patient with children, frustrated at times, but at his core, a deeply committed family man.  He falls down, he has moments, and he gets back up.  He comes back to it.  He truly sees parenting as the most important job and he balances with me.  It’s not easy parenting two children with special needs- and we both know how lucky we are to have someone in it for the long haul.

Beyond our children- both James and I have lost our Daddies.  Mine, three months before Elizabeth was born, and he, 20 years ago.  We watch the children grow and grieve at how everyone lost out. Daddy and Papa Ray would have loved them so much- and I know that they do, from a distance.  But it’s not the same…

But my father, divorced from my mother since I was 1- a caring man with a gift for marrying women who kept me in the family loop, has stepped into the breach and is the children’s Papou Pete.  With him, we marvel at the power of genetics and the family lore- he keeps our children grounded in their history and their family.  His humor is our humor and we all recognize each other.

And my mother’s high school friend- childless himself- we have adopted him.  He provides that “manly” role of fixing things and fishing and pure love.  He is solid and he is there for a hug or a song.  My children adore him.  And so, we have “Dampa”.

And so today- we celebrate Daddies and Papous and Dampas, born and made.

June 19, 2010

Conquering Fear- Together

Filed under: Home Things,Tourette's Syndrome — Teacher Professor @ 10:04 am

Scene: Birthday party, ice cream cake being eaten, six people around the table- Ray-the birthday boy, Mother, Father, Older Sister, friend #1 and Vicki- family friend and pseudo-aunt.

Vicki: So, Ray, what is your goal now that you’re 8?  What do you want to achieve this year?

Ray: I want to be able to ride a ride at a park and not be scared.

… Poor Ray- he’s had a tough few weeks of fear.  Part of his anxiety issues is being afraid of heights, so he made it 10 steps up the lighthouse that is next to our neighborhood pool before his shaking drove him back down.  We went to the local water park a few weeks ago and he couldn’t go past the first landing for the water ride.  He wanted to, so much, but his anxiety sent him back down to earth. 

The sad thing is that he’s gone up them before- but only with his dad, who also shares his fear of heights, but conquers them so that his son can have the experience.  These past few times were with friends, with me, with his sister, who can scamper up anything with no fear.  I try to tell him that he’s being cautious, not scared and that caution is a wise thing.  That he can do it.  That, whatever his choice is- to go on or to go back- I completely understand.

Only he and I both know that I don’t truly understand.  That I kind of like the feeling of being tall.  That I like looking out and over.  That I like the feeling of flying. 

But he and James- together, hand-in-hand, they can feel each other’s pulses race.  They know that the each one is depending on the other one to encourage each other.  That there is company in facing your fears. 

Ray understands the power of support.  When I was researching summer camps, I found one that specializes in Tourette’s Syndrome.  “Oh, Mommy…” he breathed.  “I want to go there!”

“Why?” I asked.

“Because I can be with kids who are like me- who are working with it just like me,” he answered.

We can’t afford it this year with such little advance warning, but next year… next year, Ray will be there.  And this summer- this summer, you’ll find James on the water slide and the lighthouse with Ray.

Where they can both climb a little higher with help from each other.

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