Professor Mother Blog

October 8, 2010

Key to My Heart

Filed under: Autism,Gifted,Home Things — profmother @ 3:24 pm

Elizabeth has her own house key now- a black shiny one with pink sparkle hearts on it.  I handed it to her last night- heavy with the gravitas of it, the importance of it- the acknowledgement that she has crossed a threshold.  I realize that this is the first key in a long line of keys for her.  And  I was very aware that I’ve just traded one set of worries for another.

Because of an understanding supervisor (and let me just say- wow!), my schedule is such that I can leave and be home at 2:45 when the children get out of school.  They walk or bike home with a huge group of children, and I can be at home to meet them.  I have grading and planning and emails and other “stuff” that I have to do- but I don’t have to be at the office to do it.  My classes are over, my office hours are done, and my afternoon is “free”.  Which means that, for the first time ever, I have been able to get home, help with homework, make dinner and just be there.  It means that we’re not paying a million dollars for afterschool care, that homework is getting done without fighting and that we’re eating healthier.  It’s made an amazing difference for all of us, and although I’m up late grading and planning and writing, it’s worth every minute.

But… it doesn’t always work that cleanly.  I have to leave my office at 2:10 at the latest to get home in time, and while my boss is accommodating, other factors are not as easy to navigate.  Today, for example, I had a meeting that was scheduled from 1:00-2:00.  Should have been no problem.  But… the meeting ran late.  I was caught up in a discussion that if I had left, would have gone a different direction from the way it ended up.  I love my job.  I want to be able to shape it.  And so I stayed.  Only 10 minutes, but 10 minutes that meant the difference between getting out at 2:10 and getting caught in the college traffic as the 12:45-2:15 classes let out.  I didn’t get home until 3:00. 

This has been an issue that happens about once a week.  It’s 10-15 minutes, that while not huge, means that my children would sit on my front door steps.  Sometimes, they went over to a friend’s house.  Sometimes, their friends sat with them.  I live in a neighborhood, that luckily, has children EVERYWHERE- that has stay-at-home parents EVERYWHERE- so sitting on our front steps for 15 minutes is a regular means of socializing.  But I don’t like it when it’s a necessity. 

And Elizabeth IS 9 1/2 years old (She tries to claim 9 and 3/4, but that’s not for another 2 months!).  She is VERY responsible.  She follows the rules- to the letter.  So, we made a schedule for her to follow.  It’s posted on her door.  It has visual cues.  We practiced it.  She is to come in the house, and call me IMMEDIATELY.  She is to let the dog out to the back yard.  She is to get a snack from where we keep snack.  She is NOT to cook.  She is NOT allowed to let Emily or any friend come in the house.  She is not allowed to leave Ray alone in the house.  She is to wait for me because I will only be about 10-15 minutes late. 

This is a runup to the day when she turns ten- an age that she knows is the magic age when she can be at home by herself; 10 is 1 year away from the age of babysitting.  She has often told me “When I’m 10, I don’t have to go to the grocery store with you… When I’m 10, I don’t have to go____ with you…. When I’m 10… when I’m 10.”   She’s testing those waters of independence- 10 to 15 minutes at a time. 

I was laughing with my mother that I’m so grateful at times that she is who she is.  That she IS limited in imagination.  That she is so rules-oriented.  That she has such a hard time lying.  It means that I can trust her to follow the plan.  It means that I believe that she can handle it. 

Which also means that she’s growing up.  Which also means that I can begin to let her go- but only for 10 minutes at a time.  She’s still my baby… and 10 minutes is all I can handle.

And I’m not even letting myself THINK about when Ray gets close to 10… Ray, who has imagination.  Ray, who does lie easily.  Ray, who figures out how rules can be bent.  Ray, who has already figured out that because he is not allowed to be alone in the house, Elizabeth cannot go back outside to play with her friends unless he also wants to go outside- and so has realized that he holds the power of where Elizabeth can be.  Ray… will never be allowed to be by himself until he’s off to college. 

September 27, 2010

Don Draper at 8 Years Old

Filed under: Gifted — profmother @ 8:53 pm

Ray has started his own blog (for family and teacher viewing) and I am absolutely fascinated with the workings of his mind.  I have to say that I am blown away…

First, an explanation- He did this- all of this, with  the exception of the period, the space between and the capital at ”…Ray.  Leave…” completely by himself- the typing, the words, the concept.  He was working on a project for the Fall Festival and I suggested that he write up his ideas in his blog.  This is what he did….

I am doing a poster on “Fall Festival” and I got the idea of doing a motto . My motto is fresh, new, interesting here it is.

 Come happy.  Leave scared.

My motto for me is.

Talk to Ray. Leave with ideas.

********

I’m seeing a marketing genius- or at least a really good con man!  I’m also amused at how my own blogging has inspired him to reach out as well.  This is a boy who has loved words since he was born- would listen to their rhythm, their sounds, their feeling in his mouth.  I watched him like a hawk during his first two years to see if autism was going to strike him also.  It didn’t- not quite the same way.  Sensitivities?  Oh yes.  Irritation?  Oh my, yes.  Anxiety and shutting down- ohhhh, yes.  Language?  Language was never a problem for him- It’s not so much the words he uses, as the way he uses them.

To tell you about his love of words, I love to share the story of when he learned the “F” word when he was six.  One day on a field trip, a very helpful little boy taught him all of the words- all of them.  All of the George Carlin list-ok, not ALL of them…  When he got in the car, he checked his new knowledge with me.  ”Mommy, is Sh#$ the ‘S word’?” 

“Yes, yes it is.  It is not to be used in our household.”

“Is da$# the “D word’?

“Yes, yes it is.  It is not to be used in our household.”

“Mommy, is F#*k the ‘F word’?”

“Yes, yes it is.  It is not to be used in our household.”

And he sat in the back of the car, rolling the word around in his mouth.  *F*^#k… FU#$… F&^K.  Trying an emphasis on each letter.

Finally, with significant disappointment, “Huh.  I thought that it would be longer”. 

I love that story… and how he wanted such an important, forbidden word to have that weight, that gravitas behind it, and how such an explosive, four-letter was almost… boring.

After all- why use a little word, when a big word will do?  Why not have a bunch of words?  Why not have a motto for himself?  And so, Ray- I leave with ideas. 

And, by the way, in typical kid/old fogey interaction, he taught ME how to change the color on the font.  See? 

September 7, 2010

It’s Time

Filed under: Autism,Gifted — profmother @ 9:37 am

Apparently the  ”Day After Labor Day”= “Turn the air off and the heat on” down here in South Georgia.  Never mind the thermometer- Fall is here!  Which makes me think of developmental timetables…

It is amazing to me the degree that the calendar tyrannizes us- and I include myself in that subjugated group.  The day of my 40th birthday, I was looking for those encroaching wrinkles- and found them.  The gray hair I had already found… sigh. They probably were there already, but I didn’t notice until the calendar told me to look for them.  When my daughter was having a hard time talking, no one would listen to me until the day she turned two.  Never mind the fact that she didn’t babble, she didn’t make sounds other than a change in volume from a pleased hum to an ear-piercing screech, and she didn’t have any words- no one would listen to my concerns until she turned two.  March 5th= “range of typical development”.  March 6th= “area of concern”. 

Did she learn to talk?  Yes- but with a great deal of instruction and prompting.  And it happened a few months after she turned four.  And in times of stress, she still echoes or screams or loses her pronouns or reverts back to earlier language patterns. 

My son was sortof the opposite.  He was talking at 10 months, 14 word, run-on sentences at age 2.  I was a proud mother, but no real development of him happened until he was assessed at the end of 1st grade, when they found that he was reading 3 grade levels ahead.

In both cases, I felt vindicated.  “See?  I TOLD YOU there was something different about this kid!  Can we do something NOW?“  But the calendar determines the level of concern, the level of intervention, a change in what we do. 

The calendar clock is a tool that we devised way back when we needed to organize our lives- when we needed something to help us direct our attention- to remind us.  “Oh, it’s getting cold.  I should prepare for winter…  Oh, the days are getting longer.  I should plant now or I’ll be hungry.”  The calendar keeps our religious observations on track- Wearing our Sunday best- our work lives coherent- Working for the weekend! Meeting at 1:00!- and our recognition of important people and their relationship to our lives- Happy Birthday, Gran!.  It helps us coordinate with other people- Wanna meet for lunch at 12:00?- and helps us prioritize- At 4:00, I have to start making dinner.  The calendar clock serves as a tool to organize our lives- it recognizes that we might not pay attention without a prompt. 

The calendar can also remind us of things that we would rather not pay attention to. When my friend’s son turned 13 and he was still watching “Blue’s Clues”, she was reminded, once again, that he is “behind”.  When kindergarten started for the daughter of another friend of mine- a child in diapers- she was reminded once again, that her daughter is “delayed”.  When December 26th rolls around, the loss of my dad is fresh again.  In these cases, the calendar drives the loss, the sense of anguish, the grief. 

But when the needs themselves are already attracting our attention, when we’re noticing that there is a need, regardless of what the calendar says, we should be able to do something.  When we’re in the middle of coping, of managing, the calendar can trigger it all back again- we should be able to toss the calendar.  If you’re hungry- eat.  If you need speech therapy- get it.  If you need 4th grade reading material, read that.  If you’re working on diapering skills, work on those.  I have read where the greatest strength of email/cellphones/electonic media  is that it allows us to be in control of our own time.  It would be so nice to be able to focus on the individual, on the patterns, the needs, and the growth. 

And in the case of my school, it would be so nice if the day after Labor Day wasn’t the day the heat goes on. 

I could carry on more, but I’m sweltering and I have a class at 11:00 I have to prep for…

August 26, 2010

Twice-Exceptional and Overlapping Labels

Filed under: Autism,Gifted,Twice-exceptional — profmother @ 3:33 pm

I have to thank Jess and her readers for an intelligent, honest, open conversation about labels.  It’s why I love true community and the conversations have certainly made me think…

Take the following list of characteristics:

  • Overly aware of sensory information
  • Awareness of and memory for details
  • Extreme interest in singular topics- some call “obsessions”
  • Penetrating insights
  • High levels of activity; often difficulty sleeping
  • Finds and creates patterns
  • Can focus for long periods of time on areas of interest

What am I describing?  These characteristics can be found on list of descriptors for both giftedness and autism.  Taken from one perspective, they’re symptoms of a problem; from another, they’re characteristics of tremendous strengths.  So much of it depends on the context.

I will never forget when I first took Elizabeth to be evaluated for Early Intervention at the age of 2- worrying, afraid of what they might tell me.  The evaluator asked, “Does she react strongly to things she hears or sees or touches?” 

“Well, yes.  She cries- a lot- when she’s put on her tummy and she can’t stand the feeling of sand or lace.  But those are early signs of giftedness.”   I had expected some questions about language, about withdrawal, but not things that I had rolled my eyes at, worked around, and nurtured.  She was clearly analyzing things and she was already starting to learn her letters.  Of course I saw signs of giftedness!

The evaluator gave me a look of pity and said “Well, it fits the profile of autism, along with her language delay and her times of withdrawal.”

I sat there, stunned.  Here I was looking at her glass as half-full- more than half, overflowing, and I’d just been told that her glass was half-empty and losing water rapidly.  Here were two “experts”: me in the gifted corner- for I know gifted education, I’ve taught, studied, etc., but I knew nothing about autism- and that expert over in the autism corner looking at these same behaviors- the SAME behaviors- and coming to completely different conclusions.  We would be in for a prize fight in which my daughter’s treatment programs, educational programs and people’s perception of her would be altered depending on which aspect was “winning” on that particular day.

For the thing that gets me is that she still, seven years later, is all of that- she still hates sand, still is focused on topics of her interest, doesn’t really follow the conversations of others, is hurt to her soul when people are “mean”, fixates on one singular idea and won’t get off of it until she has processed it to her liking, and has to search for words when she’s anxious or stressed.  She wanted to name her fish, her doll and her dog “Jingle”- all at the same time.  Oh, and is doing math three grades ahead and reads beautifully and writes well, but not imaginatively.  And there sits that glass- overflowing and leaking. 

But- and I want to emphasize this- she, and my son, are each one person- not two disparate halves.  As I said in a comment on Jess’ blog, I bristle at how much attention and focus there is on my children’s “dis”abilities, and how much lack of attention there is on their abilities, when it’s all the same child and sometimes the same behaviors. I bristle when I am made to feel that I’m pushy or “braggy” when I’m asking for what they need if it’s advanced and I’m given sympathy if it’s for an area of challenge- and I’m ignored if they’re doing “fine” because of the exhausting interaction between the two. 

One of her readers noted that there seemed to be an interesting overlap between giftedness and autism… I agree.  I think so much of has to do with perspective, and ability to cope within a given environment.  Neurological wiring is fine-tuned.  There’s perhaps a reason why Silicon Valley, home to Apple and ,  is home of some of the highest rates of giftedness and some of the highest rates of autism/Aspergers…

Silicon Valley, by the way, is a place , according to Matt Ridley, where ideas come to “meet, recombine and mate”.   I, personally, think that the unique combinations of giftedness and autism that is floating around has a lot to do with that... (The highest rate for autism is in New Jersey, which is home to Princeton, close to New York, and home of numerous toxic waste sites)

August 25, 2010

Labels- Love ‘em and Loathe ‘em

Filed under: Autism,Exceptionality issues,Gifted,Twice-exceptional — profmother @ 5:28 pm

(in response to Jess’ post about the gifted and talented label- I’m engaging in respectful dialogue)

`I wish you wouldn’t squeeze so.’ said the Dormouse, who was
sitting next to her. `I can hardly breathe.’

`I can’t help it,’ said Alice very meekly: `I’m growing.’

`You’ve no right to grow here,’ said the Dormouse.

`Don’t talk nonsense,’ said Alice more boldly: `you know
you’re growing too.’

`Yes, but I grow at a reasonable pace,’ said the Dormouse:
`not in that ridiculous fashion.’

- Lewis Carroll- Alice in Wonderland

Every child is special.  Every child has something to contribute and every child, no matter how far the difference from “typical”, has a uniqueness about them and a value and something that they contribute to other’s lives.  Every child.

Labels

But differences exist.  How we, as individuals, as a classroom, as a community, define and respond to those differences tells us much about what we value, what we worry about and what we fear.

There is a human, biological need to find patterns, to categorize, to seek commonalities.  It is related to how we learn; it is related to our very survival.  The ancient man who first saw a new animal, had to ask “Is this going to eat me, or am I going to eat it?”.  And we use language to divide, to understand, to classify.  The need to organize is so biologically innate, the lack of it creates its own sets of fears.  People who do not find order, do not find connections, do not find patterns live in fear.  “We”- those of us who do find order and commonalities, sometimes label this inability “autism”.  I know, I know- there is a lot more to the label than that, but this is a hallmark of it…

As a result of our need to classify, there is also a need to define “typical”, “normal”, “routine”.  Was today a normal day?  Does my body feel the way it does normally?  Is my child acting normally?  Herein lies the rub-”normal” is a comparative word- and the challenge is “Compared to WHAT?”  Compared to other children?  Compared to their own individual pattern?  Both sets of comparison implies value, but they can give you very different information.

We can look at groups of people and classify them a bunch of different ways.  We can classify by race, by height, by age, by how fast they learn to read, by hair color, by religion, by what genre of movies they like… there are a lot of different ways to find commonalities and differences.  On Sundays (Saturdays for some folks), people are sorted by religion.  Schools tend to classify by age.

When we educate children in groups, a “norm” is found.  Piaget found that at certain ages, children thought in particular ways.  We have 1st grade, 2nd grade, etc. as a result of his work.  Maria Montessori advocated teaching children in ages ranges rather than grades (ages 6-9, 9-12) because of the range of typical development.  And so we have graded schools and we have Montessori schools and we have all of those expectations about what a First Grader does, a Fifth grader, etc.  Expectations about learning rates, social abilities, language abilities… aspects that directly affect a child’s behavior in a classroom setting are made and we teach to those expectations.

There probably is no such thing as a perfectly ”typical” child- a child who is of average height, averge intelligence, average achievement, average peer relationships and average language ability from an average family in an average community.   But we have an educational system that is based around all of these things being “normal”- with some “allowable” differences.  When we look at children’s age-related development in schools, we tend to look at language, peer relationships, emotional development, intellectual, and physical aspects. Kids who are introverted, or really, really good at doing hair, or afraid of dogs are just not dealt with in educational contexts- there are no labels for them because there is no need for educational services for them.

Only some kids don’t fit those age expectations.  Perhaps- oh let’s say:

  • 1 in 110 children don’t act in “typical” way of other children their own age- they have more limited language, sensory and social skills.  We find some examples of kids who don’t act like most of the other children their age, but an awful lot like each other, and we call that thing that they have in common “autism”.
  • Or we look at other children, say 1 in 12 who can talk just like their age peers, who can relate to their friends just like other kids their age, but who aren’t reading or doing math as well as their age peers- in fact, quite differently than their age peers, and we call that thing that they have in common “a learning disability”.
  • Or we see that 1 in 8 kids are a lot more active, have a much shorter attention span, but everything else is typical, and we say that thing that they have in common is “Attention Deficit Hyperactivity Disorder”.
  • And we see that about 1 in 20 kids learn much faster than other children their age, have higher vocabularies and are more sensitive, and we call that thing that they have in common “giftedness”.

The problem is that people confuse the label with the person- the term is there to inform educators that this group of children NEEDS something different, not to “reward” or “punish” the child or imply any value about the child.  The child is acting in a non-age-typical way and needs to be taught using non-age-typical ways.  As long as we group children in schools by age, we will have labels.  Labels help us provide education that is better suited to that child- and others like her.  If we grouped by extroverted/introverted or gender or reading interest, we would have different labels because dichotomous categories, while easy, have outliers.

The biggest challenge is that not everyone fits the categories as cleanly as the original examples.  There are some children who ARE (blue), and some who are NOT  (red) in particular categories, but there’s an awful lot of kids in between (purple?).  So, lines have to be drawn.  And lines are drawn sometimes arbitraily, because all of these labels have to do with comparisons.  Categories are messy, categories are not always fair, but categories are how we function.  ALL categories of exceptionality- disability and giftedness- are societally defined because when you define a “norm”, you immediately define a “not norm”.  The causes of the “outside the norm” are found in biology, in environment, in personal choices.  Whatever the causation, the reason there is a category defined is because when kids are “outside the norm” of a typical classroom, you have to do something different- you have to educate differently.

Gifted Label

ALL parents want their child to grow.  ALL teachers are in the business of helping children grow.  A parent whose child is 3 grade levels below, or the parent whose child is 3 grade levels ahead, or the parent of the “typical” child all have the same goal- of having an education that will allow their child to be the very best that they can be.  Of having activities that challenge, but do not frustrate.  Of enjoying school without being bored or belittled.  Of learning something new and valuable every day.  Of having a classroom where differences are honored and celebrated as part of the range of human experiences- but are acknowledged.  Because not to acknowledge differences is to give in to the crushing sameness of the “norm”. A “Community” acknowledges and learns from each other’s differences; a “commune” stamps out differences and individuality.  If you don’t label a difference, you don’t have to educate to it.

Honoring and recognizing and educating to differences requires time and commitment and money.  Parents of gifted children have long been ignored in this process.  In the federal budget for 2009, 13 billion dollars went to special education; $7,000 went to gifted education.  I am NOT advocating taking away from special education- I am just trying to point out that there is a discrepancy between services to approximately the same number of children.  It is hard to give to those who “already have so much”.

Only, they don’t always have that much.  MY children, because of my educational background, because of my knowledge, because of my (rocky, but still better than some) financial resources will attend summer camps.  I will take them to Children’s Museums. I buy them math and language arts curriculum.  Friends of mine are taking their children with them to launch rockets in England.  Other people I know are taking their children biking through the lavender fields in France.  We can supplement; we can fill in the holes; we can provide an education to our children that will allow them to grow beyond what the school can offer.

But many, many families cannot.  They cannot for many reasons beyond their ability to control.  And there are many, many children with “gifts and talents” from families who cannot buy them materials or spend significant time with them to develop those abilities.  To take away, or not to fund gifted education programs in the public schools is classism, racism and discrimination at its worst because what we are telling our society is that the only people who get to lead, to grow or to learn at their own rate are those who can afford it. Because what we are saying is that only “some” children are to learn in schools, only “some” children get to learn something new today, and only “some” children have their educational needs met.  This is a battle that children with different racial backgrounds won in 1954 with Brown v. Board of Education; it is a battle that children with disabilities won in 1975 with the passage of PL 94-142; and it is a battle that children who learn too fast, too in-depth and outside the box have yet to win.

For you see, schools do not, by law, ”have to” maximize education- they do not have to show benefit to all students.   For if there’s one thing we know, it’s that many, many kids do not benefit from school.  We know that those children from poverty who start off strong in early elementary school, but do not have their “exceptional” needs met, who are not challenged, who are not served- those children fail.  And they fail in huge numbers.  And many, many of them do not go on to finish high school; and of those that finish high school most do not go on to college; and of those who do finish college, most do not go on to graduate school.  They do not become the successes that they started off with the potential to be.  In other words, they do NOT just “make it on their own”.  And what have we lost when the system did not allow its best and brightest to go forward?  I’ll tell you- we’ve lost the ability to change the system…

Educationally, we know that kids who are learning quickly, who are creative, and who are not challenged are being let down.  But even culturally, they suffer.  It’s culturally acceptable to laugh at the “nerds”, the “geeks” and the “brainiacs”.  At the real school level, when the kid who is reading Jane Austen on the bus is laughed at, no one steps in.  No one stops the other kid from ripping the book out of her hands.  No one stops kids from snickering when the fourth grader asks a questions that relates our Civil War to the crisis in Iraq.  No one stops a teacher who yells at a kid who came up with an alternative way to solve a physics problem.  We would NEVER allow such responses if the child were blind, deaf or in a wheelchair.  We are working on having such behavior be unacceptable for children with autism, with intellectual and developmental delays, or with learning disabilities.  Bullying is bullying- and just because a child is who they are is no right for differences to be mocked, to be taunted, or to feel afraid- no matter the nature of the differences.

Twice-Exceptional

There are services out there to help my daughter with her challenges- she got Early Intervention services, she got speech, she got occupational therapy.  We had access to sensory rooms, modulated music, diet help, neurologists… it was an amazingly long list.  We had itemized lists in the forms of goals of all of the things she couldn’t do.  And in all of those years and all of that work and all of those professionals, nowhere did anyone ever ask, “And what can we do to help her strengths?”  That was left up to me.  That was supposed to be something that I could do- alone.  Even though her strengths helped her improve in her areas of challenge.  Even though her challenges were impacting her areas of strength.  Even though no one had ever quite worked with someone like my daughter before.  I was encouraged to focus on her areas of challenge- but no one from her therapies ever helped me identify how to help her grow in all of her areas. And when my son’s original tests showed that he was “normal”, only one psychologist ever said “Hmmm- there are some interesting patterns- let’s try a set of tests to see what’s going on- oh look!  He has anxiety and ADHD and Tourette’s and giftedness going on.   You’ll have a challenging time with him.  Here are some recommendations.”

I found help.  I connected with other twice-exceptional parents who shared my pain, I found psychologists who understood and I am an educator who can talk to other educators.  I told my story about my daughter and my son and our journey so that others would have similar tools.  I’m lucky.

********

Labels aren’t about value or love or pain- even though they can cause them.  Labels are terms designed to help provide guidance for services.  When labels outlive their usefulness and start to mean other things, they should be changed.  “Intellectual and Development Delay” is the label replacing “mental retardation”.  (It’s about time, too!)  “Mental Retardation” replaced the terms “Idiot” and “Imbecile”.  Can’t say I’m crazy about the label “gifted”, but it doesn’t have a good replacement yet.  But whatever the WORD that the label is called, it is describing a DIFFERENCE- a difference to be celebrated, a difference to be appreciated, a difference to be dealt with.  And if you celebrate one form of difference, if you acknowledge that there are different ways in which you interact with children, you have to celebrate them all.

After all, my child’s differences are no more or less important than yours.  All children are special.  All children have something to learn and something to share.  And all children, ALL CHILDREN must be appreciated- regardless of what form of services or educational interventions or “differences” they have.

August 19, 2010

Dear Mrs. Cameron,

Filed under: Gifted,Schools,Tourette's Syndrome,Twice-exceptional — profmother @ 11:42 am
Dear Mrs. Cameron,
I know, I know- you’re inundated with parent emails today- now that we know that you’ll be teaching our little darlings!  I hated being swamped with parents and the demands the first week of school…
 
Which is why I’m not asking you to do anything- I just want you to know.
 
I wanted you to know that my son Ray will be in your class.  Ray has Tourette’s Syndrome and anxiety disorder.  That can mean a bunch of different behaviors, and this summer, he’s been spitting.  He CANNOT control it, anymore than we can control a sneeze or a hiccup- which is to say that he can sometimes control it, but it takes away from his concentration on other things.  I have been asking him to use a Kleenex to spit into to reduce the impact on others, but he hates it.  I want you to know that he hates having Tourette’s.
 
I want you to know that the spitting has been declining, but a new one will start soon- these tics- the head jerks, eye rolling, throat clearing, etc- wax and wane.  As one goes away, another one takes its place. 
 
I want you to know that he’s very bright- stronger than Elizabeth in many respects.  So, he is not on a 504 or in special education because there is no academic impact… yet.  He’s also not in gifted because the anxiety shuts him down and to try and fail would hurt more than not trying.  We’re working with him on that.   I want you to know that I am heartsick that he is not getting services that can help him with his challenges, or services that can help him develop his significant abilities, but I that I do know how kind and thoughtful and challenging you were with Elizabeth last year, so that I have relief knowing that he’s with you.   I want you to know that he has a hilarious sense of humor that is pretty sophisticated, but tends to show it in writing rather than out loud.  He’s a brilliant kid, but he’s not going to show it off- you have to really look for it. 
I want you to know that he LOVES affection- that is private.  He HATES, HATES being the center of attention, but side bar hugs will make him yours forever.  Ignore the pulling away and the grunts.  He’s shy and anxious, not withdrawn and needs you to initiate the first move.    
 
What I want you to know is, please, please:
 1) Don’t draw attention to his tics- drawing attention to them makes it worse.  And please, please don’t yell at him or attempt to correct it- it is something that cannot be corrected. 
2) Work with me on managing its effects… sometimes, like the Kleenex trick, there are ways that he can manage it
3) Don’t let anyone make fun of him.  He’s pretty good at saying he has Tourette’s, but he really doesn’t have the self-advocacy skills to stand up for himself… yet.
 
*** What I wanted to write was, “And I will defend him if anyone DARES to hurt my baby”… but I didn’t. ***
I want you to know that he has asked that you and I not tell anyone… yet.  He’s on medication and the symptoms are less now than they were at the beginning of the summer.  He’s hoping that no one notices.  However, at the end of last year, he was almost ready for me to give Mrs. Lane a fabulous video called “I have Tourette’s, but Tourette’s doesn’t have me“, put out by the National Tourette’s Association.   He’s eight years old, and can almost pass… he’s not ready for self-advocacy.. yet.
 
I want you to know that he wants you to know, but he doesn’t want me to talk about it with you in front of others… hence the email. 
 
I want you to know that he’s such a good kid and with positive feedback, he will work his heart out for you.  
 
I’ll see you this afternoon when I pick him up from his first day of school- where we will not talk about it.  :)   But I wanted you to know…
  
Claire
Update: Mrs. Cameron wrote the loveliest note back and wanted to know more about Tourette’s and what she can do to make him feel comfortable.  We’re off to a good start!

August 4, 2010

Ocean Family

Filed under: Gifted,Home Things,Tourette's Syndrome — profmother @ 2:04 pm

We are welcoming Zeus, Poseidon, Hera, Hermes, and Aphrodite to our lives now.  Oh, and “Tina”.

Ray has sleep issues and Ray craves company.  If we could all sleep together like puppies in a pile, Ray would be happy.  And since he has his own room, he is always concocting ways to get out of it, while we are busy concocting ways to keep him relaxed in it.  He has a white noise machine, a night light, his bed angled to face the television in the living room, and the television going with a sleep function on it.  He has every imaginable way we could think of to reassure him that he was not alone, that he was safe, that he could relax.  And still, every single night is a challenge.  We’ve tried passes (3 chances to get out), we’ve got a routine, we read to him, we let him read.  We’ve been firm.  And every night, he appears like a wraith at my bedside, crying, “I can’t sleep”.

So, for his birthday, Ray got a fish tank.  We figured that fish were fairly low-maintenance pets and that the sound and the company would be good for him.  Plus, it would give him something to focus on that wasn’t HGTV or the Food Network.  Having fish might teach him some pet ownership responsibility.  And if it didn’t work out, I figured, fish are fairly expendable.  I’ve never had fish before and have always considered them a pretty bland pet.  When something that could be on my dinner plate is next to my bed, I’m inclined not to get attached.  Not that I would eat a guppy.  But my cat could…

And since one of our family mantras is “What you do for one, you do for the other”, Elizabeth got a Betta bowl.

But we were going on vacation.  Which meant that the purchase of the fish would have to wait until we got back.  This past Sunday, we went shopping, where I learned that a few of my assumptions were just plain wrong.

First of all, fish are not low-maintenance.  Even guppies, like we got, and a Betta- all hardy fish- are finicky creatures.  They have to have the right amount of water, the right Ph of water, water conditioner, the right temperature and all kinds of other “right” things.

Secondly, fish are expendable, and cheap- but they have clear-cut personalities.  Ray named his fish after his love of Percy Jackson and his recent interest in all things Greek Gods.  Zeus, named because he is an “electric green” guppy (get it- Zeus/lightening bolt connection?) is afraid of the dark and darts around when in a panic when the light is turned off.  Hera and Aphrodite- typical girls- hang out together and do everything together.  Which pretty much means hanging out at the top of the tank together- the fish version of the mall, apparently.  I can almost hear the fishy giggles.  Hermes alternates between trailing after the girls and dashing around the fake plants.  Such an athlete!  And Poseidon is the algae cleaner fish (get it?  Cleaner of the “ocean”- the King of the Sea would be concerned about things like the environment).

And yes, that is the model of the St. Louis Arch in the middle

Thirdly, “fish” are not just “fish”.  Elizabeth’s Betta requires its own food, its own conditioner and its own tank.  Also, it drives me crazy how the word “Betta” is spelled.  It should be pronounced “Bet-ta” based on the spelling, and not “Bay-ta”- and it bothers me every time I see one of the million little jars we now have.  Her Betta is named “Tina” because Elizabeth’s tank lid is pink and she chose a pink castle for the bottom and a pink “Diva” sign that the fish likes to hang out around.  She knows it’s a male, but he’s so pretty with his purple fins, and Elizabeth likes the name “Tina” right now.  Between the name and the sign, I made the mistake of joking with my husband that clearly Tina was a drag queen, and now Elizabeth has repeated that to all of her friends.  I’m not sure what the neighbors now think about our pets…

A tank fit for a Queen…

And lastly, fish ARE a great way to teach responsible pet ownership- for me and James.  I now find myself, along with our two cats, hanging out in Ray’s room at bedtime with him, watching the fish.  Ray goes off to sleep with company happily.  Needless to say, the experiment has been a complete success- but not quite in the way that I imagined.

June 9, 2010

Charity and Greed: Florida-Style

Filed under: Gifted,Home Things — profmother @ 9:15 am

My children just got a fantastic offer.  Our very good friend Vicki, who is the closest thing the children have to an aunt, offered to take them to Disney for New Year’s Eve IF they can save $100 each by then.  Disney is a 3-hour drive away, so they would drive down there for the day, play, watch the fireworks, and drive home, exhausted and wired and having lived an incredible experience.  She’s a brave woman!  Plus, it gives everyone a long-term project to plan for.

Elizabeth is incredibly motivated.  She’s already a saver.  In a now-legend family story, she saved her Christmas money, and asked for little jobs to do, and saved up $45 over four months for a heart-shaped rug with flowers on it that I had originally told her “No, you can’t have it, but you can always save your money”.  When she was four years old.  FOUR!  She’s going to make the family fortune.  She already had $25 saved for “something”, so she’s well on her way.  She’s plotting all kinds of money-making opportunities.

Ray is… not a saver.  He gets $2 and spends $2.25, somehow convincing Elizabeth, my husband, me, store clerks, random strangers in line, that he will be eternally happy and thrilled with this particular toy/car/Lego/ball/pen, if only he had one dime more…  Manipulation and verbal pleading are his forte.  Plus, he’s cute.  He reminds us a bit of Puss-in-Boots from Shrek with the enormous eyes that beg you to help him out.  Even when we hold the line, he spends the very last dregs of his money immediately. 

So, when the offer of Disney came up, Elizabeth started gloating and figuring.  “I have $25 already.  I only need $75 more.  Over 6 months, I need… and that means….”.  Her strength from autism includes singular focus.  Ray looked at the enormous amount he needed and immediately not only gave up, but started convincing himself that he didn’t really want it.  “There’s no way I can save that much.  Besides, I WANT to spend New Year’s with you, Mommy!” 

I realized that this is an opportunity for my husband and I to actually have a New Year’s together without children, and there is no way that I’m giving that up.  Plus, I really want Ray to learn that long-term saving over time can pay off.  The kid IS going to save money for this trip- we will make sure that he’s successful. 

So I lowered the expectation.  “Because he’s younger” is the reason we gave, but it’s because I knew that he wouldn’t/ couldn’t set a goal for something that big.  So, for every $2 he earns, we will “match” him $1, which means that he only has to earn $66.  When he did the math and realized that he would still be a dollar short, I ‘”graciously” said that we would contribute the extra dollar.  “What about ME, Mommy?” asked Elizabeth.  “If I only get $99, will  you give ME a dollar?”  Ahhh- sibling rivalry.  And so, we’re committed to contributing $2 for this expedition.

Which means that they’re now the most helpful children I’ve ever seen.  For a quarter, they will empty the cat box.  For another quarter, they’ll clean windows.  For another quarter, they’ll wash the car.  We have already established the list of “You have to do these things because you live here and are a member of the family, and anything above and beyond that can be paid”.  My mother has even gotten in on the action and come up with a list of things that they can do around her house to help towards the cause.

And to make sure that Ray doesn’t spend his cash, we have a “bank account” started.  I have an ongoing Excel spread sheet with their “earnings” added into it every evening and they can see the numbers adding up.  So far, they’re each up to $.75. 

But there’s only so much money that they can earn/we can pay them before it’s clear that we’re actually paying for this trip.  Plus, Elizabeth and Ray both quickly figured out that at the rates we pay, they would be emptying cat boxes for a very long time. 

So, they turned very quickly to the age-old strategy of making money from other people.  “What about selling something, Mommy?”  After our refusal to let them sell off all of their furniture on Ebay, Elizabeth thought of a bake sale. ”We can sell cookies!  We can sell them for a dollar each!  We’ll make LOTS of money!”

Which prompted their first lessons in supply-and-demand economics and profit and loss statements.  Their faces were crest-fallen.  “Can’t you even donate the flour, Mommy?” Ray asked, disgruntled, kicking the kitchen cabinet in frustration. 

And then I threw in the kicker “And if you’re going to do a bake sale and make money from other people, you have to give 1/2 of your profits to a charity.  It’s also possible that people will buy more if you do this.  This way, everyone benefits”.  We had just bought some Dawn soap because of their ad to help the critters, so the example was fresh in their minds.

So, we started researching which organizations to give money to… They were very interested in helping out the birds from the oil spill, but it turns out that BP is paying for the International Bird Rescue Research Center to help the birds.  Huh!  I guess that they’re following through on the whole “we will help fix this” thing.  But sea turtles are close to our hearts and the Loggerhead Marinelife Center is planning on receiving a number of the sea turtles that might be affected.  So, we chose to support the LMC and the Suncoast Seabird Sanctuary

To drive the need home to the children, I’m going to replicate a fabulous experiment I did once with kindergartners where we put oil in water and we brainstormed different ways to clean it up.  We tried sponges, we tried hay and the thing that worked the best was soap.  The experiment lesson plan is here

So, here’s our plan…

  • Saturday, June 12th, my children are going to be making and selling cookies and lemonade.  I will front them start-up money and they will pay me back from the proceeds(I won’t even charge interest).  And yes, I’m volunteering the vanilla and sugar and oven.  They’ll pay for the flour and chocolate chips.
  • 1/2 of the profits will go to the Disney fund- which my children are drooling and slathering about
  • 1/2 of the profits will go to the Loggerhead Marinelife Center and the Suncoast Seabird Sanctuary

Wish us luck!  It’ll be an amazing lesson in economics, charity, achievement, and salesmanship.  Although I was kindof looking forward to months of not cleaning the cat box…

And… I’m flirting with the idea of my husband and I going on down- alone-to Disney ourselves, too.  Wonder how much I can pay myself for cooking dinner?

UPDATE: Early Birthday party celebrations took priority over the weekend.  We’re on for June 19th!

June 4, 2010

To Boldly Go

Filed under: Autism,Gifted,Home Things — profmother @ 6:07 pm


I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived- Henry David Thoreau

These are the voyages of the Starship Enterprise.  Its continuing mission: to explore strange new worlds; to seek out new life and new civilizations; to boldly go where no one has gone before- Gene Roddenberry

Or, as in our case, perhaps we’re working on it…

This summer, I’m working with my children on “Summer Adventure Camp”- aka “Mom loves Singapore Math and Michael Clay Thompson’s work and I’m bound and determined that my children WILL get exposure, so I’m building themes around them”.  We’ve had a few bumps, primarily because of timing of other camps and my need to teach and find child care.  But we’ve made a little headway… The first week, since my mom was in town, we touched on geology.  We made “earths” of a chocolate chip inside of a marshmallow coated in chocolate (core, mantle and crust).  We “floated” graham crackers on peanut butter for the plates to crash and create earthquakes and mountains of graham cracker crumbs.  We made sedimentary rock layers of graham cracker crumbs, chocolate chips, marshmallows and sugar; smashed them and left them in the sun to make metamorphic rocks, and melted the whole thing together to make igneous rocks and to complete the rock cycles.  Geology was a very yummy unit!

This week, we’re moving onto “Spanish Explorers”.  We live close to St. Augustine, the oldest city in the country, so I thought that it would be a great field trip!  We started with the concept of “Exploration”; we looked at a globe about how and why Columbus crashed into the Americas; we talked about how the Native Americans did not have a concept for “owning” the land How can you own something you can’t take with you?; and we did a brief history of Columbus and Ponce de Leon.  We talked about how the Spanish explored up the coast and came up to Georgia, right where we are here. They had learned earlier in a visit we made to Fort Frederica that the very small, but decisive Battle of Bloody Marsh was fought right here on St. Simons Island where the British defeated the Spanish- driving the Spanish out of Georgia for good and settling the line between GA and Florida.  Incidentally, only two British soldiers died- one in the battle, and one of heatstroke. 

And so, in a fit of experiential education, we decided to be Spanish explorers in our own woods.  We talked about how they were loaded down with armor.  We talked about what they would have been looking for.  We dressed in long sleeves, hats and long pants.  Ray wore his raincoat, to be “Red and Gold” Spanish armor.  We brought paper and pencil to make maps.  We biked to the edge of a path that cuts through the woods between a church and the road, because we decided that our neighborhood probably didn’t look like it did when the Spanish where there so it wouldn’t be “cheating” to bike there.  There was great excitement, great planning and giddy expectation. 

The children strode boldly into the woods on the path, Ray running ahead, swinging wildly at tree branches in his way. 

“Stop!” I commanded. “Explorers did not have paths!  Explorers had to MAKE paths”.

The children stopped and looked at me with eyes agog.  “You mean, off the path?” they whispered and we stepped out into a woods suddenly grown deep and mysterious.  The sunlight slanted through the green and the mat of leaves underneath looked sinister with shadows.  Water dripped off of the leaves from a recent rain.  It felt like a primeval forest.  We bent to move past vines hanging off trees and avoided the deeper part of the thickets.  The matted leaves were so thick that there didn’t seem to be any solid earth under our feet.  Rotting trees lay all around us, going back to the swamp that we were right on the edge of.

“Look where you put your feet,” I warned.

“WHY?” they screeched.

“Because I don’t want you to step on any snakes,” I said, and just like that, terror struck my poor daughter.   She ran against my side, crying and panicking.  I put my arm around her and we walked together, through land untouched by human feet, or so it felt.  Ray was ahead, clearing a path, looking carefully as he jumped, picking up sticks and sticking them into rotting trees.  I convinced him not to turn anything over since we weren’t sure what creepy-crawlies might be lurking.  Emily’s shoes got muddy as she jumped across a creek. We looked at the ferns and the leaves of the trees.  The heat and humidity were all around us. A bird caw made us all jump.  Mapmaking got abandoned as the lack of a fixed point became a problem.   “Can you imagine trekking through this with armor and gear?” I asked.  I got a resounding “NO” from my not-quite-intrepid explorers.

We lasted 15 minutes before they turned back onto the road and back to “civilization”.  “I don’t want to be an explorer!” Emily said and my daughter vigorously nodded her head.  Ray looked disappointed and scratched his leg. 

“I don’t want to be an explorer!” Ray echoed 10 minutes later with the “itch” turned out to be a tick.  I frantically pulled off his clothes, and we scraped 6 more off of him.  We all raced to the bathrooms, throwing off clothes, and took showers, feeling the creepy-crawly sensation all over us.  No one else had a tick on them, but we’re all still anxiously checking every few minutes. 

As I stood in the shower, I reflected on two sad things:

  1. Exploring through the woods was one of my favorite things to do when I was a child.  I would spend hours in the forests around our house, playing house with carpets of pine needles and trying to catch sight of the fairies that I just knew lived down in the little dip filled with violets.  I was so sad that my children don’t get that experience of being in the wilderness… but then, my woods had no coral snakes hiding in the leaves.  My woods had no boggy patches filled with water moccasins.  My woods had ticks, but not nests of them.  My woods didn’t have the possibility of a hardy alligator hiding in it.  My mother instincts quite overpowered the sense of adventure today.
  2. This generation of children is having their “Adventuresomeness” taken out of them.  Because of standardized tests, because of the tremendous pressure of failure, because of the proliferation of choices provided by others and not having to create their own, children these days don’t know what to do when the greatness of choice and exploration provides itself.  They’re used to the road, the path, the “civilization” of it all.  Fear and discomfort and anxiety keeps us in the present, keeps us in the known.  I only hope that today opened up a little adventuresomeness in my children today.  Adventuresomeness that doesn’t have ticks.

A friend of mine from high school is part of the Space Exploration Falcon 9 liftoff that happened today. 

There are still explorers and there are still places to explore. I hope that my children are part of the adventure.

 But perhaps it’s a good thing that Ponce de Leon or Neil Armstrong didn’t have their mother along. 
 
 
 
 

 

May 31, 2010

I’m Not Crazy- I’m Just Out of Context

Filed under: Bipolar,Gifted — profmother @ 11:06 pm

I’m not crazy
I’m just a little unwell
I know right now you can’t tell
But stay awhile and maybe then you’ll see
A different side of me…

–Matchbox 20

A study from the Karolinska Institute in Sweden just found that people who were schizophrenic and people who were highly creative had very similar brain scans.  The portion of the brain responsible for filtering information, the thalamus, which also regulates dopamine, were similarly depressed.  This inability to regulate attention and “ideas” might account for the “out of the box” creative thinking, as well as the mania and hallucinations of bipolar disorder and schizophrenia.

The difference appears to be in how a person responds to these ideas.  If they are able to regulate their emotional reactions, the ideas are “creative”.  If they respond negatively and are disturbed, or appear to be disturbed, then they are diagnosed with a mental illnesses. One man’s craziness is another person’s creativity.

Certainly, we know that mental illness and creativity overlap, and the more self-expressive the art or ideas, the more they overlap.  While there are creative mathematicians, they operate within a framework of accepted rules.  Despite the iconic image of the “mad scientist”, there are more depressed writers than chemists. The context of the creativity defines the acceptable degree of craziness.

In my conversations with my brother, who had bipolar disorder, I would be struck at his insights, until after a while I realized just how far afield he had gone and that he was becoming agitated and losing contact with “reality”.  There are many famous examples of creativity and craziness living side by side- Salvador Dali and VanGogh, to name a few.  But the difference is that my brother didn’t “produce” anything that was deemed valuable, while Dali and VanGogh had products that others wanted.

In other words, it may not be the actual thoughts that are the problem, it may be the reaction to them, whether from the person themselves or others, that determines whether there is a “problem”, or there is “creativity”.

Perhaps a relationship can be found to other research just out from the University of Southern California that has found that the “click” of comprehension or the clarifying of a creative thought fires the same centers in your brain that opium fires.  That means that learning and creating can be as pleasurable as drugs.  You can see it in a classroom of children when they are learning at their ideal rate; when they are being challenged.  Pupils get extended- both within the eye and the students themselves.

I’ve certainly felt it- that moment of “wow, things make SENSE now!” and I can put things together in new and unusual ways because I’ve just figured out how they go together.  I feel it when I teach and when I write and when I learn math.  It’s the moment in bipolar disorder when the mania starts and the understanding begins to flow.  It also may mean that the clarifying of the thought, the “eureka” moment, the “by George, I’ve got it” might be the difference between craziness and creativity.

And perhaps the critical element just might be in the audience and the context.  Creativity was recently cited by a study of global CEOs as a key element in their company’s value.  They needed to think in new and innovative ways, and to be able to communicate that vision to others.  Creativity unchecked, with no product to focus on, with no “learning” to share, with no one to communicate, might just be called mental illness.

Craziness just might be a job requirement for many positions these days…

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