Professor Mother Blog

January 24, 2012

Fighting Fog

Filed under: Bipolar,Gifted,Home Things,Medication issues,Tourette's Syndrome — profmother @ 12:14 am

This evening, holding my son- who has been quiet and subdued all evening.  

Me: What’s wrong, Ray?

silence.

Me: Anything you want to talk about?

silence- the silence gets to me.  It’s not a loaded silence.  Just a still.  

Ray: What do you want to talk about?

Me: Any words in your head?

Ray: No

Me: Any feelings in your head?

Ray: No

silence

Me: If you were a color, what color would you be?

Ray: Gray

Me: If you were a shape, what shape would you be?

Ray: A sphere

Me: If you were weather, what kind of weather would you be?

Ray: A cloud

Me: A stormy cloud, a gray cloud, or a big puffy cloud?

Ray: A rain cloud.

Silence. 

Me: What does the rain cloud want to do?  Feel better?  Get some sleep?  Feel happy?

Ray: You know.

***************

The problem is that I don’t know.  I’m never quite sure what son I’m going to have on a day-to-day basis: Do we get the angry, resistant, black mood Ray; the quiet, not-really-there Ray; the run-around and talk a mile-a-minute Ray; the anxious and wring his hands Ray, the focused scholar and look-how-smart-I-am Ray?  While all kids go through “moods”, his are intense.  Even when he’s gray.

Jess, from Diary of a Mom, talks about fighting “dragons with rubber swords”.  I feel like I’m fighting fog with pointed sticks.  We have the “stick” of medication, which nibbles around the edges of issues- creating other issues in the wake.   We have the pointed stick of therapy, in which he refuses to engage- or worse, pretends to be completely normal (a play therapist told us that it was our problem, not his when he was 4).  We have safety and structure in our house, which leads to agoraphobia.  We sortof have labels: Anxiety Disorder, mild Tourette’s, mild giftedness, not quite autism, not quite bipolar, not schizophrenia. In dark times, James and I have to remind each other- he has special needs.  And just because there’s no good label doesn’t mean that the needs aren’t there.

I’m grateful for many things: I’m grateful that he has never tried to hurt himself or anyone or anything.  I’m grateful that he has never talked about not wanting to be here.  I’m grateful that he’s smart and funny and that he can do academics well enough that everyone around him is frustrated that he’s underachieving- but not failing.  I’m grateful that he has a few good friends.  I’m grateful that I have enough background to have consistency, behavior charts, and metaphors to help him.

But I’m terrified.   I feel like I’m keeping him from falling off the edge through pure will- and he’s only 9.  I’m terrified of adolescence.  I’m terrified of his genetics.  I’m terrified of losing my child to alcoholism, to suicide, to a place where he won’t let us help him. I’m terrified to speak possibilities aloud for fear of them coming true.

And I don’t know what to do about the monsters in the fog that never quite reveal themselves enough to fight.  If you can’t see something well enough to fight, it can’t be vanquished.  It just shifts and morphs.

Into the gray.

Ray, I have no idea what to do.  But I’ll do anything to help you.

January 20, 2012

The Cure That Hurts

Filed under: Autism,Twice-exceptional — profmother @ 2:48 pm

My daughter is “cured” of autism. She was identified as having PDD-NOS at the age of 2, and lost the label at the age of 5 after a tremendous amount of therapy and her verbal skills reached within age appropriate levels. She does not qualify for services or meet the established criteria anymore. She’s “cured”.

However, although her verbal abilities are within age-appropriate levels- which actually means about a year behind her peers-

  • Her visual memory is approximately 2-3 years ahead of her age peers.
  • Her ability to visually disciminate is 2-3 years ahead.
  • Her mathematical skills are 2-3 years ahead.
  • Her ability to decode and verbally read aloud are 2-3 years ahead.
  • Her logic and problem-solving skills are 2-3 years ahead.
  • Her social skills… are about a year behind age peers.
  • Her ability to comprehend what she reads is about on grade level.
  • Her processing speed for verbal information is about a year below.
  • Her subtest scores on IQ tests look like a mountain range- high to low.
  • Her overall IQ? Slightly higher than average.
  • She has significant sensitivities to texture; and she fixates on subjects.
  • Her interest in fashion? Completely typical

She is a classically “twice-exceptional” child- gifted in many areas, with a disabling condition in others- but not low enough or high enough to qualify for much of anything.

Does she have autism? Legally- no. But in our day-to-day living? Yes. She works around her autism with no educational support, although a Section 504 for social issues is being discussed. Does being “cured” mean that she’s now magically typical? Heck, no. We struggle with the same issues we did before she got “cured”- but they’re much less intense now. Taking away the label did not mean that the problems vanished.  But the intervention then helped with the management of them now.

According to the New York Times, scientists are just about to dramatically reduce the recent “epidemic” and “cure” autism. No- there have been no magical interventions. No, there have been no sudden scientific breakthroughs. They’re going to define it out of existance. Because we all know that if you don’t label it, it doesn’t exist, right?  Right?

The old definition required that a child exhibit characteristics in 6 of the 12 criteria in the areas of communication deficit, social deficits and repetitive behavior.  The proposed new definition requires that a child exhibit at least 3 deficits in communication and social behavior and at least 2 in repetitive behaviors.   3+2=5.  While 5 may appear more inclusive than 6, the issue is that the new definition requires that a child be more level in their areas of challenge.  The distinctions between “Aspergers”, “PDD-NOS”  and “autism” will become submerged into a high/low continuum. Some people fear that children who are less diffuse across the spectrum, but more intense in particular areas may be left out of the definition.

This, by the way, is similar to identifying gifted children and requiring them to be strong in everything.  In the gifted education field, we have worked really hard to not leave out children who are really strong in one area, recognizing that few gifted children are that “level” in their abilities.

When we were Googling the issues associated with Elizabeth, we had the word “autism” to look up, to find out information.  We had a label to use to explain her differences- and to seek remedies.  We had information to read and we had understanding of her differences.  Without that label, she would have been perceived as a difficult child, a spoiled child, a child who wouldn’t talk.  I wonder how many parents will try to beat their child into submission because they perceive the behaviors as the child’s fault, as their fault.  Without a label, behavior becomes very personal.

Because of her label, Elizabeth received therapy- lots of therapy. Daily speech and occupational therapy through the publically-funded Early Intervention services were provided, and I was able to research ideas and things to do at home.  With no label, there are no services, and with no services, there is no determinant of growth.  With no label, parents are dependent on dealing with symptoms, not understandings, and a child’s ability to receive help is dependent on a parent’s ability to pay for interventions of fuzzy problems, rather than a more cohesive set of services.  Without a label, developing a child becomes even more dependent on socio-economic status.

One of the most critical issues is the issue of funding.  With autism being “cured by definition”, there are no services and if there are no services, there is no funding  With no funding, the progress that has been made in the causation and treatment of autism dwindles.  There is still an awful lot we don’t know about autism.  Ignorance is understandable- ignoring is not.  Without a lot of labels, there is no reason to move research forward.

Elizabeth was fortunate.  She was “cured” of autism- after intensive therapy, after intensive research.  She had to get a label to learn how to live with her issues so that she could be “cured”.

I fear for the children who will be “cured” of autism by changing definitions- who will find that there is no help for their issues, and there is no cure at all.

I want to end with a call for action- but I’m not sure of the direction to go.  Certainly, it is important in the development of autism as a field to have more and more cohesive understandings- for funding purposes, for research purposes, and for intervention purposes.  If the label means nothing, then the research can find nothing.  More recent studies are finding that the impact may be less than expected.   However, it must be realized when examining a change in a definition that the problems faced by individuals with autism are real problems- and redefining them doesn’t remove them. 

January 19, 2012

Cut from the Team

Filed under: Autism — profmother @ 1:52 pm
  • We can be the kings and queens of anything we believe
  • It’s written in the stars that shine above
  • A world where you and I belong
  • Where faith and love will keep us strong
  • Exactly who we are is just enough.
  • “There’s a Place for Us“- Carrie Underwood

There’s that stark, crystalline moment where you realize it-  ”I just don’t fit in here- and they’re asking me to leave.”  I first distinctly remember it at my last waitressing job in college- a fancy seafood restaurant.   I got to wear nice black pants and I was supposed to stand quietly and solemnly as the diners made their selections.  From the beginning I had problems- I confused the types of fish, we had an enormous number of tables, and the rhythm of the place was so different from the informal hubbub I was used to at Bennigan’s.  We were supposed to work as a “team”, but from the beginning, I never could get the timing down.  I would be running someone else’s food, which would make me late for my own tables, which would mean that the other waiters would often be getting my tables their drink orders.  I never could catch up.  When I apologized for making my “team” members wait on my tables, my explanations were perceived as excuses and there was a lot of eye rolling.  A lot of smiles that never quite reached the eyes.  Until one day- after about a month, my manager pulled me aside and said that “It’s not working out.  You’re fired.”

I was devastated.  It was the first time I had ever truly failed at something I was trying really hard at.  Now, of course, I can look back at it and learn several things from it.  First of all- the restaurant business was not for me.  I left waitressing and took a job as a paraprofessional.  And discovered teaching and special education. A potential career path closed and another one opened.  I won’t thank him, but it worked out.

The second is that sometimes, no matter how hard you try, they’re not going to like you.  Sometimes, it’s not me; sometimes, it’s the “team”.  I’ve worked with enough great teams to know that when the you’re on the right one it can be magic.  The curriculum development team at William and Mary, the CCGA program development team, heck even the bartenders at Bennigan’s… these teams all worked with me.  And I had an awful lot of fun.

The only thing I enjoyed about the fancy fish place was the shark marinated in teriyaki sauce.  Mmmm…

It happened again when James and I lived up in the Northeast.  They kept asking him to do things, and he was drowning, doing two people’s jobs as they kept promising him that they would hire someone else, but never did.  They would ask him to do something and then complain that it wasn’t right, but couldn’t tell him what he needed to do to fix it.  He learned to check in with his boss until he was perceived to be “pestering”.  We never did “fit in”- what ever that magic chemistry is – in my case, I was told is was because of my semi-Southern accent.  And in both cases, rather than taking time to fix it, both “leaders” just asked us to go.  James tried- really, really hard- and it just didn’t work.  He’s moved on, too.  We wound up here and although we won’t thank them, we’re so glad to be away from snow and ice.  And James is having a ball with the Leadership Team at CCGA.

The only thing I enjoyed about the Northeast was the clam chowder.  Mmmmm….

And now it’s happened to Elizabeth.  On an athletic “team”.  A team on which she was accepted for the whole year. She started off behind because they held a get-together before the season started; a get-together in which the parents made the carpool setups and in which emails were exchanged.  A get-together we missed because we were visiting family- family not from around here. 

Our frustration at missing key pieces of information because we were not on the email list was perceived as–whining.   When we told another parent that we didn’t think that there was practice because we didn’t get any times or dates– lying.  Her tiredness from ongoing illness — lack of commitment.  My trip to Africa and my inability to take her to practice– excuses.  Her inability to discuss conflict with a “team” member– bad attitude.  My offer to facilitate discussions and problem-solving– interference and pushiness.  Her withdrawal from the social exchanges- which led to few people giving her the ball– poor sportsmanship.  Her lack of growth in athletic skills– laziness. 

And last night, we got the phone call “This just isn’t the right place for her”. She’s off the team.  Blindsided, by the way- there is a policy that she could not be cut until next season.  But the coach decided that she wasn’t going to be part of the team–no warning, no information, no feedback, no instructions about what she could do to improve. 

I can’t help but feel that there’s a subtext here.  Although autism has not explicitly been stated, it’s there.  It’s there in the ability to know that you’re messing up, but not know how to fix it.  It’s there in the difficulty finding words to explain.  It’s there in the hoping that if you try hard enough, show up enough, and do enough, it will all work out- but it’s not enough.  It’s there in the voices of “Well, I know she’s different…” and the flinches of fear- fear!- when she expresses unhappiness.

It’s the fear that gets to me- and blinds with me with rage and anger and hurt.  They should be afraid- of me, a protective mother- not of her.

She’s 10.  I was devastated at 22 when I encountered the subtle interplay within a “team” that tells you that it’s not working- and you really, really want it to.  James was devastated at 45.  We had enough experience to know that sometimes teams do work out.  That they can accept and love you and you can be productive and deal with adversity and move forward.  That there are leaders who can communicate effectively. That there’s a place for you.    That sometimes it’s not you- it’s them.

But she’s 10.  And getting cut from a “team” sure emphasizes “different”.  She’s devastated.

I can’t think of anything that I enjoyed about this.

January 17, 2012

Getting Back In the Water

Filed under: Uncategorized — profmother @ 2:05 pm

Getting Back in the Water

From: Claire E. Hughes-Lynch, Ph.D.

To: Autism Science Foundation

January 17, 2012

I am a translator. Not of languages, but of viewpoints. Any autism information that I ever encounter is filtered through two lenses- my role as a parent of two children on the autism spectrum and as a professor of special education. I am always looking for information to share with other parents, but also, to share with teachers- both special education and general education. When I first began researching autism as a desperate parent, I soon found that there were parent voices, and there were scientist voices, and there were educator voices. My knowledge as a “teacher of teachers” with a Ph.D. in education meant that I was very able to translate from one perspective to another. I have a blog www.professormother.com that captures this dual role of mine and it has led me to write two books “Children with High Functioning Autism: A Parents’ Guide”, and “Teaching Children With High-Functioning Autism: Strategies for the Inclusive Classroom”. I have presented to parent groups and to teacher groups and to autism researchers the differing perspectives, needs and concerns of each group. I am a translator.

I am hoping to go to the International Meeting for Autism Research (IMFAR) as a parent, and as a special education professor. I have several goals that I hope to meet through this meeting.

1) Acquire information that I can share with parents. As a blogger, as a speaker, and as an author, I try to have the latest information available to share. I view information as leading us in a direction for decision-making– not necessarily a straight line, but a process of fits and starts. It is through science that we can “test” information. Parents are always looking forward, whereas science is looking backwards and making sense of the stories. I want to hear about the information that can help parents continue to look forward continue to make good decisions. There is so much misinformation out there, it is important that the “good” information be shared as much as possible and the various dialogues be presented. In order to do this, I need good data.

2) Acquire information to share with teachers. I work directly with beginning teachers in Georgia and present to experienced teachers around the country. In all cases, their lack of understanding and awareness of the diverse needs of children with autism is stunning. There are “stories” that are shared, but little information that takes the situation of the present-day classroom into consideration. I attempt to share the perspectives of parents and students, and to share what tested and effective strategies are out there and what are some promising new directions. In order to do this, I need good data.

3) Acquire information to begin my own research agenda. I have been so busy being an “autism mommy” and presenting to teachers, that I have had little to contribute to the scholarly community myself. I have studied and presented on what factors impact the satisfaction of the IEP process of parents, but I would like to really begin to determine effective intervention practices that are based on good scientific data. I have begun some preliminary work into the study of the management of anxiety and have begun searching for grants, but such attempts are in their infancy. In order to do this, I need good data.

4) Acquire information to help my husband, my family, and myself. Lastly, and certainly not least, my own children are pre-teens, and heading into adolescence. While I can talk to parents of newly-diagnosed children, I am at a loss about issues that are upcoming in my own children. I want to be able to chart a path for myself and others who are looking at how autism impacts the life span– fancy words for “How the heck do we navigate middle school, high school and adulthood, when it feels like we just barely navigated through the first 10 years?” In order to do this, I need good data.

As you can see, autism is very personal to me on so many levels. I firmly believe that as different groups- scientists, teachers, and parents- dialogue, we will find connections between strands of research and viewpoints that allow us to make good decisions, and enables people with autism to function in a society that understands and respects everyone. I have begun contributing – but In order to go on, I need good data.

Claire

Claire E. Hughes-Lynch, Ph.D.

College of Coastal Georgia (www.ccga.edu)

Parent, Professor, Part-time Blogger

September 8, 2011

Becoming History

Filed under: Home Things,Schools — profmother @ 7:04 pm

Where were you when the world stopped turning on that September day?
Were you teaching a class full of innocent children
Or driving down some cold interstate?
Did you feel guilty ’cause you’re a survivor
In a crowded room did you feel alone?
Did you call up your mother and tell her you loved her?
Did you dust off that Bible at home?

—Alan Jackson

I didn’t know anyone who died in September 11th.  We know people who knew people, and we know one man who missed American Flight 77- the one from Dulles that crashed into the Pentagon.  He missed the flight because he had just received a phone call from his wife telling him that she was pregnant with their first child- a child who is now my son’s best friend.  But we were not directly impacted.

We have stories, though- along with all of the Americans that day- we all know where we were, what we were doing when we first heard, or saw it.  The horror of that day- and the shared horror of it- are all seared into our awareness of ourselves as Americans.  Such moments are called “flashbulb moments” as we remember clearly exactly where we were and what we were doing because of the intensity of the emotion. I’ve been listening to other people’s stories this week- along with so many others- and I read the stories in the newspaper and online.  In the words of Alan Jackson, “Where were you when the world stopped turning?”  We are grieving as a collective nation share our individual stories.

My children are 15 months apart- Elizabeth born in March, 2001 and Ray born in June, 2002.  They have hit developmental milestones very close together.  They learned how to talk by talking to each other.  They both learned how to ride a bike together.  They both started loving and then hating Barney at the same time.  We call them the “Almost Twins”.

But that day, September 11th, separates them.  Elizabeth was there.  She was the baby we held on to tightly that terrible, terrible day and the quiet, horrible days afterwards.  Ray… Ray was perhaps a result of September 11th as I forgot my medications- all of my medications- that week, and James and I held tightly to each other.  He was part of a little “baby boomlet” that occurred in June and July of 2002.  September 11th is a dark demarcation line between the shared childhoods of my children.

Last weekend, in rememberance of the 10 year anniversary, I started educating them about September 11th.  I wanted them to know.  We watched “United Flight 93” and “World Trade Center“, and we talked about it.  It was an… odd experience.

Elizabeth wanted to know exactly what she was doing on that day.  “Chewing your toes” wasn’t the answer she was looking for, and so she kept asking- hoping that somehow the gravity and horror of the day would have been recognized by an infant.  She wanted to add her part to the stories that our friends and I have been sharing around the dinner table or in quiet moments. She wants it to be recognized that she was there, too.

Ray wasn’t there and felt left out.  He wanted to talk about the facts and the details of the planes and the process.  He wanted to know the fear and the panic of those who were on the planes and in the Towers, but he was much less interested in the experience of us, those who weren’t directly impacted.  He wanted to understand it as a movie, as a documentary.  As something that was real, but not personal.

Seeing the difference in my two children, I began to think about history- and the way we understand history.  Every generation has their “horrible” moment- a moment where everyone at that point knew where they were.  For this generation, it was September 11th.  For my parents’, the assasination of JFK. For my grandparents, the bombing of Pearl Harbor.  Moments at which fear and anxiety and a need to come together and grieve and appreciate life are shared by an entire country.  Moments of pure living that remind us of how tenuous living can be.  Moments that shaped history.

I have always loved history.  I love reading historical novels; I love going to historical places; and I love getting to understand how and why people were like at different times.  I can’t go visit battlefields because I can sense the horror and the fear that still lingers around places that are calm and peaceful now.

And yet, I have no direct feelings about the assasination of JFK.  I can watch movies and think “Oh how awful that must have been“, but it’s theoretical.  It’s from a long time ago.  And they dressed funny.     It’s not disrespect.  It’s not lack of imagination.   It’s just that it’s not my reality.  They aren’t my emotions.  It’s history.

For Ray, there have never been Twin Towers.  He can look at my pictures of my first visit to New York with the Towers in the background, and they’re from a long time ago when people dressed funny.  I cried at the memory of that day as I watched the movies.  He wanted to know what happened afterwards.

September 11th is a 5th grade standard in the Georgia Performance Social Studies Standards.  It’s in there along with the Civil War, World War I, Vietnam and the Cold War.  This year’s fifth grade class is the last class who was alive on that day- and they were infants.

September 11th is a dark demarcation line between the shared childhoods of my children.  It’s a line between my life and my son’s.  It was my reality… and next year, when Ray is in fifth grade, September 11th will truly start to become history.

*********

There is a poem by Carl Sandberg that expresses this better than I can.  I grieve, and I respect and honor those who lost loved ones.  And in my child, I see the Grass beginning to grow…

Pile the bodies high at Austerlitz and Waterloo,
Shovel them under and let me work–I am the grass; I cover all. 
And pile them high at Gettysburg
And pile them high at Ypres and Verdun.
Shovel them under and let me work.
Two years, ten years, and passengers ask the conductor:What place is this?Where are we now? 
I am the grass.
Let me work

– Carl Sandberg

September 6, 2011

Memory Quilt

Filed under: Home Things — profmother @ 9:10 am

This Labor Day, I spent an hour up on a ladder, finding four large boxes stored in the garage closet with Elizabeth, who was helping me in a project planned for a decade.

When Elizabeth was a baby and started outgrowing her baby clothes, there were some that I just couldn’t give away.  I couldn’t pack them up in the plastic garbage sacks and haul them off to Goodwill for some stranger to look at with a critical eye.  Those other people might not be able to see:

  • How precious that faded little blue jean dress was- the one Elizabeth wore when she was six months old,  and sitting next to her teddy bear who was the same size she was- and she was still wearing when she welcomed her new baby brother home.  
  • They wouldn’t understand how sweet the smell of fuzzy white footie pajamas with just a hint of sweet potato stain on the collar is- the perfect combination of Tide and Johnson’s baby shampooed little girl.  
  • And strangers definitely wouldn’t appreciate the newborn onesie with the little pink hearts on it that was the bane of my existence to snap up correctly and James never did manage to fasten correctly.  

I just couldn’t give them to Goodwill.  And since I was pregnant again when Elizabeth was six months old, maybe I would keep them for our next little girl.

Only the next baby was Ray- and onesies with hearts on them were not really considered acceptable.  And so, they stayed in their bag.  To be joined along the way by:

  • That sweet green dress in which Elizabeth hopped around the lawns of the lighthouse at St. Augustine when she was 18 months, laughing so hard that her tow-headed curls shook with her.  
  • And I just had to add the pink-and-white  Oshkosh overall dress when she was 2 -that was a larger version of the dress we brought her home in- and she wore everywhere for a year.  The original dress went in the bag, too.  
  • And the coat that she got when we visited Mamamum for a fall weekend that had little Pooh ears on the hood and she kept petting over and over.  She wore it three more times that winter in Florida- and every time the sweetness of my baby took my breath away.

The bag became a box the summer Ray was two, because we were moving, and I had to go through his baby clothes as well.  I scoured the clothes that were too small to leave behind, to give to Goodwill, to hand down to friends.  But I found myself smiling at the tiny Hawaiian shirt that reflected the blue snap in my son’s laughing eyes, and I couldn’t let those moments go.  The box metamorphed into a bin.

And so, I decided on a Project.  A Project that I would get to- someday.  Someday when we stopped moving.  Someday when I wasn’t starting a new job.  Someday when I wasn’t researching about autism, writing about autism, or presenting about autism.  Someday…I would turn all of those wonderful baby moments captured in these clothes into a quilt- one for each child- so that they could take a part of those moments with them.

I love quilting.  I haven’t quilted in 12 years because I hand-sew- each square, each whorl, each section I stitch by hand.  It takes me a year to make a quilt and I’ve only made three.  I don’t sew for the final product.  I sew for the joy of the doing.  But sewing a quilt takes time.  And time for a quilt would be something that I would have… someday.

I realized last week, that, amazingly, Someday was here.  This fall, for the first time in 10 years, I am not up to my eyebrows in some project.  My book is turned in, I know what I’m teaching and I’m merely tinkering with the classes, and the children are in the same school they’ve been in for three years.  No one is dying.  We’re not moving.  We have time to deal with small things, big things.  We have time to be.  I’ll be doing some traveling and some consulting and I can sew on the plane.  And I have time for the first time in a decade to get out the boxes- grown now to 4 large bins.

Four large plastic Rubbermaid tubs that have been dragged with us through 8 houses, 5 states, a summer in limbo in a storage unit, a tornado, and even a fire.  They take up a good chunk of a closet in our garage.  And they were brought down this past Monday with the help of my 10-year old baby who was strong enough to lift them and carry them inside the house.

I found out, that despite my good intentions, and the new sewing basket from Michaels, that I still couldn’t do it.  Elizabeth and I unpacked those dresses and those onesies and those smocked Christmas dresses and I just couldn’t lay scissors to them.  It rained hard as we got the edges of Tropical Storm Lee, and I told stories. I told stories of “Oh, you wore this when…” and “At this age, you were…”, and “Remember that picture when you were wearing this?”  Elizabeth carefully examined and folded each smock, each dress and each footie pajama and repeated like a mantra, “What was I doing in this one?”, as if each one connected her with her past- a past in which she was loved and adored and there was always laughter.  A past with no ghosts, no sorrow, no autism and no issues- a past that was only full of joy.  We reveled in the memories of her babyhood- the best parts that are all I want to remember.

I have some things for the quilt.  I have some of the baby blankets and some dresses with vivid colors and patterns.  I have a couple of swim suits.  But the yellow swim suit in size 6 months that had lemon patterns on the shoulders and the matching hat?  How on earth could a little yellow square capture the memory of her sitting in her play pool on our back deck in her bouncy chair as she kicked the water with laughing squeals?  Elizabeth pointed out that her baby doll, the original Lily (they’re all named Lily.  We just have Lily 1, Lily 2, etc.) would be able to wear most of the clothes.  So the little yellow swim suit with lemons on the shoulder went into “Lily’s Bin”.  

  • So did the red velvet dress with the white lace collar that she wore her first Christmas.  
  • And the darling pink and white gingham dress with the big strawberries on the pockets into which she would stop and put things on our walks.  
  • And the jean jacket with the red and white checked ruffles that she wore on her first airplane trip to Seattle.  

I looked at each article of clothing and fell in love with my daughter all over again.  She looked at each article of clothing and began to construct her sense of today with herself from yesterday.

I finally decided that a quilt just can’t capture those moments- small bits of fabric with the edges sheared off.  With Elizabeth’s assistance, we packed almost everything back into three of the tubs- rechristened “Lily’s Tubs”.  They went back into the closet, with the assurances that they would be used to dress up her doll, or to be worn with her own daughter.  Someday.  I can’t help but wonder where we’ll be dragging those tubs to next.  I know that my husband and my mother will roll their eyes at Elizabeth and me as we find space in our crowded house for 3 tubs of outgrown clothing.

I will still make a quilt of the fabrics that evoke memory through its pattern or its texture.  I will still work on this project that is 10 years in the making.  But I have a clearer understanding that sometimes, memory is formed by the details.

August 25, 2011

A Flawed Formula

Filed under: Schools — profmother @ 6:33 pm

Written after too many lectures trying to prepare teachers for a changing world of Education…

A Flawed Formula for Education

EWF= TEfEx

An Educated Work Force = Time (in most cases 12 years- in some states 13, and in still others, 14) multiplied by the EFfectiveness of the teacher (as judged by helping children pass the test), multiplied by the established EXpectations (as defined by standards- Common Core or state-specific). 

This is the formula that educational policy task forces, the Bill and Melinda Gates Foundation, and most state departments are operating under. The formula that shapes the changes in education.  It’s not a “real” formula, but it’s the one that appears to be the driving force of Education today.

It’s an appealing formula.  There’s logic to it.  If you have good stuff to teach (standards) and you teach it well (Teacher effectiveness) over the length of time that children are in school, students will do well.

It’s an appealing formula- all of the various components are manageable, maneuverable and measurable.

It’s an appealing formula.  And it’s wrong.

A formula is derived when the relationship of one or more changing variables can predict the results of the outcome.  We all know formulas like:

  • The area of a triangle= (Base x Height)/2
  • Distance = Rate x Time

These all look at the relationship between two things  and their impact on a third thing.  Predictable.  Easy. Stable.  But here is the key assumption:

  • Nothing else impacts the outcome

If you drive a steady rate of 50 miles per hour, you will drive 50 miles in one hour, whether or not your tires are bald.  Whether you are in a gas-guzzling Hummer or an electric Tesla does not impact the distance =  rate x time formula.

There is a tremendous flurry in education these days, focusing primarily on two of these factors: Teacher Effectiveness and Standards, although there is also some limited discussion about allowing students to graduate “when ready”.  A Google search of “Teacher Effectiveness” yielded 2.7 million results, ranging from New York to California; from New Mexico to New Hampshire.  There is a great focus on “teacher effectiveness”- which generally translates into test scores.  If students do well, teachers must be effective.  If they don’t do well on the tests, then teachers are ineffective.  And the test scores are related to the content standards.

So there is also a flurry over content standards.  Forty-three states have adopted the Common Core Standards, according to the Association of Supervision and Curriculum Development.   These standards seek to be consistent across states so that, as in the case of a colleague of mine, her child does not suffer when he moves from Alabama to Massachusetts and encounters higher expectations.

And there is even some talk about changing the time required for graduation.  Georgia’s “Move on When Ready” program states that when students can complete their coursework, and take the test, they can begin dual enrollment.  The time it takes to complete an education can become flexible.

But for this formula to work, nothing else can impact the outcome.  Nothing.  And that’s where there are severe problems with mandating excellence, and requiring achievement.  Because the formula takes two things out of consideration:

  1. The highly diversified abilities and backgrounds, of children in schools, and
  2. The ever-changing landscape and culture of public school education in America.

The Missing ABCs of the formula- Abilities, Backgrounds and Culture

I have taught in both the private and the public school sectors.  I was a highly effective teacher in private school- heck, I might even have the courage to say that I was a GREAT teacher in private school.  I took kids to higher levels of learning.
We had debates that encouraged critical thinking and hands-on projects that encouraged creativity.

And in my private school, I had parents who enforced homework.  I had kids who showed up on time, clean, well-fed and attentive.  I had kids who, although diverse in their world-cultural background, were fairly similar in their economic backgrounds- they all were on the same soccer teams, saw each other at the mall and understood the “rules” of success.  They did not talk back to teachers; they said “I’m sorry”.  And the kid who kept getting into fights?  Well, we told his
parents that they had to look elsewhere- that we couldn’t serve their child appropriately in our setting- which, we couldn’t.  We didn’t keep a psychologist on staff.  We had learning programs for some kids who might be struggling, but certainly if a child was “too low”, we couldn’t serve him either.  We certainly wouldn’t have even accepted the child who couldn’t stay “dry” in her pants at age 6 and we couldn’t provide transportation to the kids who lived across town, even if they did qualify for our scholarships.

Certainly my students weren’t perfect.  I had the student whose mother drank and he was so anxious that any negative feedback would send him into full-blown tears.  I had the kid, whose father was a well-known doctor, who acted out for  attention and got it by having the nanny fired.  I had the insecure darling of a media giant who had her own iPhone at age 7, but never had a friend over.  Even these houses had secrets and anxieties and issues.

But in my private school setting, I could adapt for children’s different learning needs and provide choices in their educational experiences.  I could ask a parent to send me to specialized reading training so that I could help her child even better.  I knew that the parents, the kids and my administration expected success, worked together for success, and got success.  And in my private school, I was given gifts during Teacher Appreciation Week; I was thanked during conferences
for going “above and beyond”.  I was told that I was the reason that parents were willing to pay more money than some of them could really afford- so that their child could get a “good” education.  In the end, I could point to our standardized
tests and show that compared to those “other” kids, my kids were learning at ever-improving levels.  In that school, I could TEACH.  And I had the numbers to “prove” that I was effective.

I have also taught in public schools.  In public schools, we take EVERYONE.  Everyone.  And that means… everyone.

There is a Zero Reject policy in public education.  No child is considered uneducable.  That means that all of those children that my- and other- private schools couldn’t serve?  Public schools take them.

Public schools take the child with severe intellectual and developmental delays who needs help in learning toileting skills, but has a hilarious sense of humor and laughs at all jokes.  Public schools take the child with autism who throws tantrums and chairs.  Public schools take the child who needs a psychologist so that he can learn how to handle frustration and anger.  It can’t provide the psychologist, but it does take the child.  Public schools take the children who are
gifted at very young ages and because there are no books at home- because there is no cultural appreciation for learning- they channel their abilities into leadership- of gangs instead of corporations.  Public schools take everyone.

Public schools take the children who did not choose their parents well.  In my public school classrooms, I had the child who was going home at age 9 to take care of his younger siblings because his mother was too strung out on drugs to be home, much less cook dinner.   I had the child whose parents were so beaten down by the system that they didn’t bother showing up at school because they knew that the teachers were going to make comments about how uneducated they were and how poorly their child was doing as a result.  I had the child whose mother told me that it was my job to teach her child how to read and how to act so that he can get a job, because if she did, she would mess it up.  She didn’t have the confidence or the ability to help herself, and she was terrified to mess up another generation.  Or at least that’s how I interpreted “You gots to do it.  I fu3#$ed up myself- I don’ wanna f@$k him up, too.”  She knew the language of her streets, but not the formal language that I used.  I didn’t know her street language, either.  We both learned a lot that year.

I ‘m not talking about the “tyranny of low expectations” from  special education or any system that recognizes the challenges children face.  I mean simply that my job was harder when the other parts of the educational system weren’t working together.  When kids are carrying burdens that are the stuff of my worst nightmares, it is harder to teach them.

I was a good teacher in a public school.  I could get some discussions going.  I could provide creative, interesting ways to connect children to content.  But when a child is hungry, or a child is tired from playing video games all night, or a
child is afraid of adults, it is very, very difficult to take them to “higher levels of learning”.  My test scores were not fabulous.

It’s typical for teachers to blame parents and for parents to blame the “schools”.  Most polls find that “schools” in general are terrible, but “my school” is going a pretty good job.  When parents know their schools, and teachers know their parents, we can understand each other and we can appreciate the burdens we carry.  But when we look at schools and parents we don’t know, it is easy to make judgements.  And test score cut offs.

As a public school teacher, I can’t force parents to do “their job”- I can only teach the child I have in front of me.  “Good parents” are a bonus to a public school teacher, not a requirement of the job.  I don’t get to wring my hands and say “If only”, or “they should”.  I have to teach them all.

And it’s not just the kids or the communities- it can be the culture of education itself.  When schools are paid for by property taxes, the system is set up to reward wealthy communities and to punish poorer ones.  When Congress mandates that states follow the Individuals with Disabilities Education Act (IDEA), but only pays 7% of the total cost, states must scramble to fill in the rest.  When we know that special needs are often related to poverty, we cannot be surprised when schools in high-poverty areas are low performing.

It’s racism/classism/what every “ism” you want to call it, to hold a bar in such a way that children only from certain backgrounds are successful.  When 5% of whites are dropping out of school, almost double that with 9% of African-Americans, and a shocking 18% of Hispanics are dropping out of high school, society tends to tell the low income and minority students to “try harder” by raising expectations.  If 20% of our white, middle-class students were leaving, we would change the system.  The system is designed to help those who are already successful, and to denigrate those who struggle.

Teachers are quitting by the droves.  50% quit within 5 years.  50%.  They spend a year longer than they went to college to get the degree.  And why are they quitting?  Not because they’re “ineffective”, but because the pay isn’t considered worth the hassle.  Because they’re not given mentoring opportunities.  Because it’s hard.  Because those sacrifices of your family time, your own income for snacks to feed the children, and your creativity are not appreciated or recognized by a general public who says “Don’t complain- you get a Summer vacation!” and then connects your paycheck to test scores over which you have limited control.   When essays like this are considered whining and I should get over it.

And by creating this “bar” that we’re “raising”, it’s clear that we’re not Finland- who has highly educated, well-paid teachers, a high number of immigrants, and very strong scores on international tests.  Because Finland, who has little poverty, a strong health care system, and a culture of collaboration- Finland’s “formula” looks something like this:

  • Whatever it takes

As a teacher, I was delighted if I had children in front of me who came into school well-rested, well-fed, and respectful of me and the job I needed to do.  It made my job easier if I could start a classroom off at point A and wind up at point Z by the end of the school year.  I can still do an amazing job and teach the child if those things aren’t there.  But if I am to teach my students from vastly different abilities and background to understand math and science and to be able to read and understand our history and to think critically , I have to trust that the grownups around education can do the same thing.

Our formula is flawed.

August 14, 2011

Nearing Construction…

Filed under: Autism — profmother @ 10:29 am

I haven’t been around these parts recently…. 

Since January, I have been deeply involved in the writing of my next book “Teaching Children with High Functioning Autism“.  It is being published by Prufrock Press and will be available on Amazon… as soon as I’m done…

My first book “Children with High Functioning Autism: A Parents’ Guide“- that was a love letter.  That was my story and some of my professional knowledge and I was talking to fellow parents who needed translations of scientific information.  That book was… easy to write.  That book was… cathartic to write. 

This new book is for teachers- general education teachers, special education teachers without a strong background in autism, and any teacher looking for an idea of what to do.  I’m talking to fellow teachers, but teachers want specifics, not theory.  Teachers want strategies that they can do tomorrow.  Teachers need to have something that they can implement for children who move, think, talk, feel and interact with other children in different ways.  This book required research… lots and lots and lots of research.  And ideas.  Lots and lots and lots of ideas.  And work… lots and lots and lots of work.

And I’m almost done… !!!   But not quite yet- so I’ll be back when I’m finished. 

Many, many thanks to Lacy Compton, my editor at Prufrock who has been  patient with my mis-spellings of last names, typos, and who is a master at the balance between compliments and constructive feedback. 

June 30, 2011

Expanding and Tethering

Filed under: Autism,Gifted,Home Things,Twice-exceptional — profmother @ 8:48 pm

Last night, for the first time ever, I put my little girl, my baby, my first-born, on a plane that took her across the ocean- far, far away from me. And for the first time, I understood what my mother felt when she hugged me goodbye as I took my first steps away from her. My daughter may be across the ocean, but I am tethered to her in a way I never quite understood before.

Back in January, I was looking for ways to celebrate James’ 50th birthday. “0″ birthdays are big deals in our family.  I was playing with the idea of using fabulous deals available on travelzoo.com, a site that is designed to torture me.  And then… the car died.  Big bills came due.  Money became tighter.  So- no family trip to Ireland or San Diego, or really even Disney, a relatively close 3 hours away.  At the same time, Vicki decided to go and visit her uncle who is a scientist at Cambridge… in England.. for a month.  And she invited all of us to go… All of us.  For a month.

Heck, YES!  An opportunity to stay in England for FREE?!  I was all over that- until I looked at airline prices.  For all of us.  Which, given our financial limitations, meant that there was enough money for… one.

I briefly considered going.  Running away from it all, leaving the children, leaving James to take care of them.  For a month.  Leaving autism and Tourette’s and tantrums and book due dates and deadlines and…. all of behind… for a month.  Far away- across the sea…. ahhhh.

And the responsible mommy, the one who adores her children, the one who knows that such a break would break too much had to decline. But I could give Elizabeth the opportunity.

For Elizabeth, you see, is a traveler.  She has been on planes since was 3 months old.  She adores the planning, the organization, the feeling of airplanes.  New places do not scare her.  I have distinct memories of her interpreting the symbols in Switzerland and navigating us through the maze of an international airport.  At the age of 3.  She can filter out noise and extraneous “stuff” and find the important details.  Similar to her abilities with hidden pictures and puzzles, she is able to visually locate and identify what she wants to find.  In so many ways, autism works for her now and highlights her abilities.

For months, she and Vicki have been planning this.  She was excited that she would miss the 4th of July- fireworks are not her thing.  They will go punting on the Thames.  They will take tea. They’ll go see Phantom of the Opera- live- in London.  They’re going to see “Much Ado About Nothing”- at the Globe Theater.  And then, Vicki found an opportunity to go to Paris.  As in, not Texas.  As in France.  Paris- the romance of it is just amazing.  I found Grace Potter’s song “Ooo la la” to become her anthem.    And they’re going over Bastille Day- which means that Elizabeth won’t miss the fireworks- they’ll just be in a French accent.  She’s been practicing French- badly, but learning that there are different ways to say “Hello”.  I am now “Maman”.

I have marveled watching her expand her horizons.  So many people have asked me “How could you let her go?” and my response has always been, “How could I not let her go?”  I trust Vicki a whole lot more than I would trust some sleep-away camp counselor.  Vicki understands her need to sleep, her need to reduce stimulation when she’s overwhelmed, her need to plan and have structure. And it’s LONDON!  And PARIS!!   It’s a once-in-a-lifetime opportunity.  And I’ve been battling wild envy at the same time that I’m feeling so grateful that my daughter has come this far that she can do this- and that the opportunity came at a time when she is ready to learn about a bigger world.  I can’t allow my own fears to get in the way of her growing up.

I helped her pack, full of pride, full of joy, tinged with “Can I go, too?” and a small dribble of sadness at missing her.  So many people expressed that they would be afraid; that they would be lonely; that they couldn’t let their daughter go.

Somehow, I am strangely not anxious.  I realized why when I was hugging her goodbye, and I realized that I was acting like my mother- and I finally understand the mix of emotions.

**********

When I was 10 years old, I spent two weeks with my father, my step-mother, and my half-brother. I went off for the longest I had ever been away from home.  I was nervous, but it ended up being a lovely summer of learning how to play tennis, learning that you can drink tea with cream, the movies “Bedknobs and Broomsticks” and “Superman”, and staring in the mirror with my brother as we marveled over how similar our faces were.  I got letters from my mother almost every day- letters that were full of the small details of our home.  Stories about the cat, stories about the weather.  Stories that let me know that she loved me, she was thinking of me, and that I always had a place at home.  Even as I was exploring new places, I always had a place of my own.  That level of security grounded me.  It never occurred to me that my mother was very consciously letting me explore at my own pace.

****

As I followed Elizabeth and Vicki at the airport last night- close, but not hovering; there if she needed me, but far enough away to let her try it on her own, I realized I must be feeling what my mother felt.  It’s the same feeling I had when I let her climb the slide at 10 months old- surrounding her with my arms, but not touching.  Letting her know that I was there if she fell, but that she could stretch and explore at the same time.  I was alert; I was proud, but I was never really scared because I knew that she would be all right.  We are tethered together in such a way that mere distance- whether it’s inches from the almost-a-toddler as she crawls up a slide ladder, or across an ocean from the almost-a-teenager- cannot disconnect me from my baby, or my baby from her place.

All day today, I have been aware of her- not her absence, but her presence… elsewhere.  ”Oh, now she’s landing.”  ”They must be getting on the train now.” I can sense her tiredness, her clinginess to Vicki and her interest in everything she’s seeing.  I can sense her need to hold on to Bunny, her stuffed pink bunny, and Bear, her stuffed pink bear (names have never been her strength).  I have been sending her “Mama’s here.  Mama’s always here” feelings all day.  She’s tired; she’s inundated with the newness- but she’s not overwhelmed.  She’s with Vicki, and she’s with Bear- and I’m there for her when she needs to reach out to me.  We’re tethered, but not tied.

Instead of letters like my mother wrote, I send her emails.  Instead of phone calls, we Facetime.  Technology may change, but not the mother instinct – that remains constant.

So- to my mother- I get it now.  I get it that our job as a parent is to let them explore their world, while letting them know that we are always there for them.  To quote the old phrase, for giving me- and now her- “wings with which to fly and roots from which to grow”.  Thank you for giving me that- and giving me a role model to let my daughter explore the slide then- and Paris now.

But I have to admit, I do miss her. And I really, really wish I could experience Paris with her.  

*************

If you want to read about her adventures, she’s blogging them at http://allieinternational.wordpress.com.  I may be a proud, scared, slightly envious mommy, but I’m still a teacher!

June 12, 2011

Smoke Gets in Your Eyes

Filed under: Exceptionality issues — profmother @ 5:02 pm

We’re stuck inside today because of the fires.  How a swamp- the Okeefeenokee Swamp, to be specific- can burn is beyond my understanding of swamps.  We, like much of the United States, have wildfires burning to the north of us, the south of us, and to the west of us.  When the wind stops blowing, or blows too hard, or blows from the west, we have a pall of smoke that hangs over us, making our clothes smell funny, the air burn our throats, and keeps us inside.  Even on an island, we are impacted.

My mother in New Mexico is impacted by the huge Arizona fire- the one that is out of control, doubling in size, and sending a plume of smoke as far as Iowa.  She, too, is spending the weekend inside, with the extra fear that the land around her will burst into flame in moment’s notice and she will have to run.  She is 200 miles from the fire, but there is nothing but bone-dry land around her, and the threat is there.

However, irritating and anxiety-producing as it for us, we are not on the front lines.  We are not fighting the winds, the lack of rain, the tinder-dry landscape.  My heart goes out to the firefighters and their families.  I was reading up on the AZ fire, and I found this picture of this man.  His name is Jan Koch.

Take a moment and really look at Mr. Koch’s face.  I was flipping through a slideshow and all of sudden, I saw it- his face.  And it’s a face I recognize.  Not him, personally, but his face.

He’s tired.  The exhaustion shows in his eyes, his skin, the angle of his head.

His eyes are dark and weary- they have seen more than I can possible imagine.  I feel that if I look hard enough, I will be able to see deep in his irises the images of the hellish scenes he has witnessed.  He’s trying to smile, but the images in his eyes are more than the smile can touch.

He’s not bursting with bravado; there is no cocky attitude of “Oh, yea- we got this thing beat.”  His eyes are steady, recognizing that he is fighting something that is big… bigger than we can really imagine.  His eyes demonstrate respect for this fight.

The grime on his face shows evidence of hours of back-breaking work followed by intensity.  It is his own sweat, his own tears and the remnants of the fight that leaves its mark on it.

The hat on his head shows that he has equipment and knowledge that will help him.  But there is the understanding that tools and training and technology doesn’t win the day.  His hard work and the hard work of his team is required- they depend on each other to battle this… thing.

And if you look beyond the bone-deep weariness that threatens to overwhelm him, you’ll see an incredibly stubborn spirit.  This is hope without a timeline; he is going to go back to the fire after his picture is taken.  He is not giving up, despite every good reason to do so.  He plans, and re-plans and re-plans again.  He works as a team.  And he gets up after a restless sleep to try again, hoping that today will see some progress- any progress.

I do not know this man- but I know his face.  His face that looks like so many faces of parents and teachers whom I know.  The face of so many people out of work around here. The face of so many veterans who are facing illness and disability.  The faces of all of these, within a community that doesn’t know what to do with them- a community that is afraid.

Because I work in the field I do, because I have the family I do, because I live where I live, I see so many people with this same face.  I see the faces of families who are fighting the fight of autism, of appropriate services, of human respect.    I see the faces of researchers who are trying very hard to get something to happen very fast, because they know that they are running out of time for a child that they know, a child they care about.  I see the faces of teachers who are fighting a budget battle, a lack of support and a lack of knowledge.

In all of them, I see the face of tiredness, resoluteness, and grim determination with a flicker of hope. I pray that the hope remains.

The firefights are all around us.  When I think of all of the tired faces and I feel the need for hope, a lump comes up in my throat and there is a blurriness in my vision.

Must be the smoke in my eyes.

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