Teacher Professor

April 16, 2012

Happy Sensory Birthday

Filed under: Autism,Home Things,Twice-exceptional — Teacher Professor @ 6:35 am

Authors note: This was drafted on March 7- a month ago. But not posted… See “Why I don’t blog like I used to” for explanation… Ray spent the evening at his friend’s house, because Elizabeth had decreed this a “Girl Only” party. 

Elizabeth’s birthday party just so captured her essence…Her 11th birthday party just absolutely demonstrated HER-  her spectrum-ness, her abilities, and her humor.

There were 10 girls invited- all but Emily came.. Emily who has been a best friend for years.  Emily who has traveled with us, gone through drama together, and understood Elizabeth and her quirks.  Emily who has new friends now on a travel athletic team and is growing faster and faster ahead.  Emily who decided that she didn’t want to come because she didn’t like some of activities or the other girls.  There was grief that Emily didn’t come, but for the night, it was pushed to the background.  In protective Elizabeth fashion, when strong emotion threatens, she is able to put it aside and blank it out. Autism as emotional armor.  When there are no words and the grief is too big, Emily retreats into a happy, stimmy place.

The theme was a “Spa Party”- and there were enough happy, stimmy, sensory activities to drown out the sadness.  There were facials- homemade of course.  Oatmeal mixed with honey and smeared on faces to dry.  Elizabeth happily smeared hers on and lay down with a blissful smile.  The other girls were… not as excited, but interested in the novelty.  There were lots of little jewels and sticky things to glue onto glass jars and make “beauty organizers” while putting little things into rows and columns.  There was a soap-making station in which girls mixed and poured and added smelly things to make soap.  And there was a bow-making station where girls could make a bow and pin them in their hair- and redo it, over and over again.

I use the word “station” in the teacher-meaning of the word.  Elizabeth organized her party like a differentiated classroom- and I mean she did it all.  I made suggestions, but she came up with the process.

  • She put 9 girls into 3 groups- thinking about who got along with whom, who was more sensitive and who would encourage others.  She analyzed the dynamics and made placement decisions and provided each girl with a card as they came in to let them know their individual schedules.
  • She arranged the stations around the house so that there could be movement between stations and allow room for activities.
  • She had timers at each station so that girls would rotate through 4 stations in an hour.
  • She provided materials at each station that were selected for the girls in that group- Tracy got a red bow, Faith got a blue bow, etc.
  • She provided choices, but allocated out the supplies- each group got the same number of jewels to share among the three girls in that group.
  • She started with a whole group spa eating activity (yogurt and strawberries) as girls showed up, had the stations, pizza, a whole group movie- “13 going on 30” and and then games as girls were picked up.

James and I were used as monitors and supervisors, but she came up with the ideas and was clearly in charge of everything.  I have seen teachers with 10 years of experience with less organization.

Another Author’s note-  I fell more in love with my husband as I watched him working with 3 pre-teen girls at a time, calmly helping them pour smelly soap stuff and trying to figure out directions at the same time, and then moving them on to the next station when his timer went off.  The world of Girldom is not a comfortable one for him and he handled it like a pro. 

And as I worked , much as a paraprofessional might, handling the tasks of the facial station, I thought about her future- how clearly, teaching or wedding planning or something where she can move people around and engage in happy stimmy activities might be in her future.  I thought about how turning 11 was so much less scary for me than her turning 3.  I thought about how much things change- and how much they stay the same.

She’s 11- and she is finally, finally growing into herself where autism has become part of who she is- where autism that used to be a challenge to overcome has been hurtled and is now sometimes a strength- rather than interfering with who she is becoming.  I marvel at her journey she has accomplished- and where she is going.  I can look forward with hope and anticipation now, rather than with fear.

January 20, 2012

The Cure That Hurts

Filed under: Autism,Twice-exceptional — Teacher Professor @ 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. 

June 30, 2011

Expanding and Tethering

Filed under: Autism,Gifted,Home Things,Twice-exceptional — Teacher Professor @ 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!

January 13, 2011

Happy Blog-iversary to Me!

Filed under: Autism,Book- Parent's Guide,Gifted,Twice-exceptional — Teacher Professor @ 8:46 am

Today, the 13th of January is my one-year anniversary of my blog.  When I “jumped into the water” of blogging, I had no idea what awaited me- how many, many wonderful fellow bloggers I would meet and what an amazing community there is “out here”.

I learned about blogging when Mom-Not Otherwise Specified was a blog that I found and loved- I depended on- I listened to.  In the times of dark days, I read her blog, her words of wisdom and her feelings about what was happening to her and her son.  She wasn’t speaking to “me“, but her words spoke “to” me.  I read her blog for several years as part of my regular morning routine.  I certainly never posted- that would be breaking that “barrier” I had imposed.  After all, I could learn from her, but there wasn’t much she could learn from me.  Heck, I couldn’t even find my own words- we were too lost in the mists of identification, coping, struggling, finding a “new normal”.  Her words were a lifeline that I was not alone.  But I had no time for joining the conversation.

I learned more from Kristina Chew and Vicki Forman– writers who seemed to value- like me- a balanced, scientific view of autism; who wanted to know more.  Their words presented a strong counterpoint to so much of the hysteria that I read- hysteria that I was keeping at bay in my own life.

I started the blog for two reasons:

  1. to respond to questions that some folks had had about my book– I wanted to give the “rest of the story” as well as have a chance to elaborate on some pieces of the book that may not be interesting/pertinent to the broad readership, and
  2. to reach out to those who had been struggling like I had- to be that voice of integrated scholarship and mothering that I can provide.  I had discovered my “voice” when writing the book- and I wanted to keep talking; I wanted to keep listening- I wanted to keep the dialogue going. About education.  About parenting About twice-exceptional children.  About autism.  About giftedness.  About the intersection of all of those things.

But since I’ve been blogging, I’ve learned that I’m not just reaching out to those whom I wanted to help- people like me who were drowning in the Space Between, but that I’ve made new bloggie friends.  People whose blogs I read, who comment on mine and whose I comment on (See the list to the right).  Blogs that are compilations of some of my favorite posters.  There are even edited blogs.  I’ve learned that although I am a very small speck in a very large blogosphere-  there are corners where you can find each other, you can find friends. 

There is an incredibly rich blogging community out here- a community that I observed when I was on the sidelines, a community that, as a professor, I had no idea existed.  It is a community that is largely ignored by the professional world, but that impacts lives immediately.  When one person posts, others respond. When an issue arises, there are numerous perspectives on it.  I’ve added my blog as part of my professional curriculum vitae-it’s become that important to me. 

There are those who say that blogs are dying– being replaced by Twitter and Facebook.  However, I think that blogs are an in-between… in between the in-depth monologue of the book (even the e-book), and the quick, light, surface dialogue of Facebook and Twitter.  Blogs provide an opportunity for asynchronous conversation that can be thoughtful, funny and in-depth.  Not as in-depth and insightful, perhaps, as wine and a face-t0-face conversation, but those require being in the same space and time- not resources always available to everyone who want to join in the conversation. 

And, at the very least, after a year of blogging, my mother and friends have a better idea of what’s happening in our lives.  And what I’m thinking about- which is probably the most personal part of all.

So, after one year.. I like this place!  I look forward to new friends- reading new blogs, meeting new readers.  I hope to contribute to the blogosphere in my own way- that I have some insights that others might find interesting.  I want to learn more from others.  Heck, I even want to meet up for wine and some conversations with some of the folks I’ve met here.

I like this pool…  Thanks for having me!

January 5, 2011

She Didn’t Stand a Chance

Filed under: Autism,Gifted,Twice-exceptional — Teacher Professor @ 10:01 pm

In the dark days of Elizabeth’s identification, when I was searching the internet and Googling, Googling, Googling; when I was scaring myself with what her future might look like- I remember coming across some interesting characteristics- Aspects of myself.  Aspects of my husband.  Aspects of my family.

In the dark days of Elizabeth’s identification, when I was looking for a reason for… this whateveritiscalledcuz’autismdoesn’t soundquiterightanddoesn’tcaptureitall; when I was Googling, Googling, Googling, and scaring myself with the dangers of the world around me, I remember realizing some interesting things about genetics.  About myself.  About my husband.  About my family.

One day, when I was heaping guilt upon myself- was it the immunizations?  The tuna I ate?  The water I drank?  The food I warmed up in plastic containers? The  yogurt I didn’t drink that didn’t build up the right bacteria in her gut?- my mother, in her very gentle way, placed her hand on my shoulder, and said, very lovingly- “Honey, she didn’t stand a chance.  Between you and James and your families… this is what happens.  You now get to deal with it.”

I didn’t fully believe her until we had Ray… and Ray’s issues.  Now, I look at sweet, cooing, cuddly babies who go to sleep when they’re supposed to, and who cry for short periods of time and who can play games with you, and I marvel.  The running joke in our family is that I loved being pregnant- loved it.  I was one of those Madonna figures- glowing, full of health and aware of the miracle unfolding inside of me. (What did you do today, dear?  Oh, I grew a pair of ears today.  How about you?) I would probably have been a perfect surrogate mother- pregnancy and even birth were relatively uneventful things- as uneventful as a miracle can be.  But the babies.. oh, the babies.

James and I do not make happy babies together.  He and I made two very unhappy, fussy, sensitive babies who slept in short bursts only to wake up unhappy.  Ray would not allow me to put him down, while Elizabeth- very content with being put down on her back- would have hysterics if she were put down on her stomach.  It was a constant guessing game for their first three years- and one that we still play for chunks of time- are they cold?  Tired? Hungry? Has a cloud moved across the sun? Did someone move too fast? Change in transition? Is the dryer/vacuum cleaner/ radio on?  Pearl Jam is good/ Phish is bad?

Conversely, we also made two intensely curious children.  Even without the language to ask “why”, they have always wanted to know “why”.  I was explaining to Elizabeth at 10 months old that the bubbles she was so afraid of were created by soap lying on top of water- and she could calm down.  I would explain the concept of volume and the Doppler effect to my 3-year old son who was freaking out about the change in song, and he would calm down.  We explain about social interactions being a formula- not with numbers but with words (the answer to “How are you?” + a small smile – real eye contact = is “Good, how are you”, and not how you really feel)- and they understand how math relates to behavior.  We talk about analyzing what others are saying and how the teenagers might not like to hear a 7-year old call them “obstreperous” and to keep that word for other contexts- and they get it.  The intense “why” is as hard-wired as the fear and the emotional dysregulation.

And I can’t blame James- for this is what my mother dealt with when I was a baby.  I had heard stories, but it wasn’t until it was the fourth month in a row of no sleep, and colicky babies for two years in a row… that I understood.  When I was a baby, I rarely slept; I cried hysterically;  I hated having my hair brushed.  When I was a child, I read obsessively, pulled out the tags from my clothes, and cried frequently.  I’m an only child… and I think I can guess why.

According to James’ mother, he was a perfect child (of course he was!).  But I see pictures of a quiet, withdrawn little boy who was very, very thin, rarely ate, and rarely had expression on his face.

I look at our two families, with their laundry lists of labels… and I realize… my children didn’t stand a chance.

*******

This was all triggered today, when Diary of a Mom had a beautifully-written, hysterical, touching post– and it drove me crazy, because there are only 11 items on the list.  That lack of symmetry is something I immediately noticed.  I love her post- but I could never have never written it because I would have stopped at 10- or kept on going to 12.

I recognize that my daughter’s tantrums when things are out of order… comes naturally.

I recognize that my daughter’s lining things up according to her own pattern… comes naturally.

I recognize that my son’s intense hatred of getting his picture taken… comes naturally (When I’m prepared, I’m a bit of a ham, but I hate the surprise element- and there is that same brooding look in my husband’s childhood photos).

I recognize that my son’s intense relationship with music… comes naturally.

I realize that my children’s desperate need to know what comes next and to plan for it… comes naturally.

**********

I’m not saying that my husband and I have autism.  We’re  both bright people… with quirks.  Quirks that might have needed attention 40-45 years ago, but by the grace of God, a couple of amazing mothers, and the right contexts, became… manageable.  Quirks that we’ve learned to work with; to work around; to ignore.  Quirks that got strengthened when our genetic material got combined.  Quirks that got focused.  Some quirks that are just… us, and some quirks that became a problem.

Quirks, that when combined with language problems and blood chemistry issues and triggered by whatever is in our modern world, became autism and Tourette’s and giftedness and twice-exceptionality and all of those wonderful labels that define what services and doctors our children see, but do not quite define them.  Genetics plus environmental triggers- pretty much explains most of human development. The apples do not fall far from the trees, but they do form their own shapes.

I asked her, and Elizabeth can’t make a list of 11 things either….

October 5, 2010

Science Vocabulary in Action

Filed under: Autism,Twice-exceptional — Teacher Professor @ 9:49 am

Scene: This morning- 6:30am.  Early.  Earlier than ususal for a wake-up call because Daddy is out of town and Mother has to get to work early to teach an 8am class.  Elizabeth’s bedroom.  Bed all pulled to pieces, covers everywhere and slightly twirled.  Indicating that she was wrapping herself up in the covers like a mummy and spinning all over her bed as she slept.  (We don’t even bother with top sheets anymore.  It’s too hard to put back together.  Just a comforter or two.) Two pillows- one at the foot, one at the head of the bed.  No view of a child visible.

Mother enters, turns on light.  Looks towards bed.

Mother- slight note of alarm in voice: Elizabeth?  Are you there?  I can’t even see you…

Elizabeth- faintly, from under the covers: I’m camouflaging.

!!!

****

Yes, yes she is.  In so many ways.    Trying to fit into fourth grade, but still expressing her anxiety about it as she slept.  Words are easier to find when there is no pressure.  My son is the one who is normally master of the quip, the quick come-back as he tries to sleep in just a few more minutes.  But for her to find that word, her science vocabulary word, at a point where she could make a joke- I find hilarious in so many ways.

I’ve had a smile on my face all morning.  Both at the humor of my girl, and at how far she’s come.

August 29, 2010

Walking a Mile in Her Shoes- Right into a Tree

Filed under: Autism,Exceptionality issues,Twice-exceptional — Teacher Professor @ 10:55 am

Elizabeth and Ray both had friends over to spend the night this past Friday night.  I treat this as though this were ordinary, but inside I’m squealing….

We have a tradition of “Friday Night Pizza/Movie Night” and so we ordered Dominos and settled in with a rental.  Because of Vicki’s job with the movie theater, we’ve seen more than our fair share of recent movies, so I was hunting for something that wasn’t too scary, not too controversial, and something that would interest the kids.  I accidentally chose two movies, that, according to Ray and Bruce, were “too girly”- “Annie” and “The Miracle Worker”.  Elizabeth hadn’t seen the “Miracle Worker” about Helen Keller and Annie Sullivan, so that was the chosen one, and Elizabeth and Katie settled in with their popcorn and multitude of cushions while the Ray and Bruce were vaulting over the couches.  Vicki and I sat at the dining table behind them all to corral the boys and to talk over Kentucky slushes.

Within minutes, the boys were hooked, too… “You mean, she can’t see OR hear?… Tell her to STOP that!  Oh wait, how would you do that?”  Within a few minutes, they were grunting at each other in mimic, and we had a side conversation about “How would you communicate what you need when you can’t hear yourself or see anything?”  They looked thoughtful and watched Annie Sullivan spelling into Helen’s hand… problemsolving.  I could see Ray making “letters” in his hand, feeling the process.

I laughed hysterically- quietly- when Helen was brought back to her family after learning how to behave, and she started reverting back to her tantrumy, get-her-own-way behavior.  “She’s testing her,” remarked Ray, clearly understanding the motivations and repeating what I have told him through gritted teeth on a number of occasions.

They cheered- CHEERED!- when the “breakthrough” came about and Helen understood that “water” was the name for the liquid.  Ray vaulted back over the couch and ran around the house naming things, sharing in Helen’s jubilation and language breakthrough.  He and Bruce and I had a quick conversation about how language is about naming things and seeing how things relate.  I could see Ray pondering the role of language and what it would be to be language-less. For Ray, my child to whom language has come so easily and so fluently, this was a new concept for him.  He laughed and said “That was pretty cool that Annie could teach her to talk.”  Vicki and I smiled at him in shared teacher joy and I said “Yup, that’s why I’m a teacher, because that break through is amazing.”  He smiled at me, hugged me, and I could see some respect in his eyes.  It was a moment…

Throughout all of this, Elizabeth was quiet.  She and Katie laughed at the right spots and got quiet at the right spots, but throughout, didn’t say a whole lot.  She didn’t have any questions, and when I asked, she said “It was a good movie.”  She listened when Ray and I were talking, but didn’t engage.  I didn’t think much about it…

Until Saturday, later afternoon, when I was at my office writing on a grant due the next week.  I got a phone call from her, wailing and weeping…

She had taken out the movie on Saturday afternoon and shown it to Emily, who was not part of the sleepover.  James overheard her saying “You gotta see this!” and they watched it again.  Then, they went outside to play when it was over.

When they went outside, the two of them apparently had been talking about what it would be like to be blind and deaf.  Elizabeth closed her eyes, and put on a hat and played in the yard…. where she ran right into a tree- hard.  She got a bloody nose, a scrape on her chin and a scrape on her knee.  She looks like she got beaten up. Just a side note- Picture Day is this coming Wednesday- of course.  We may have documentation of this forever.

I had to laugh as I was patching her back together when I came home, and I asked her which tree jumped out in front of her.  In her very literal way, she said “No, it didn’t jump in front of me.  I just didn’t see it.  It would be hard to be blind and deaf!  I won’t do that again.”

I was struck at the difference between my two.  They were both intrigued by the movie- both intrigued at how someone dealt with such significant differences.  And yet, Ray processed it all through with his language.  He thought about it, pretended a little bit and saw through the implications.

And Elizabeth… Elizabeth had to experience it.   Elizabeth didn’t have the language to understand someone else’s perspective.  She couldn’t imagine what Helen felt, so she had to live it.  She’s not normally a daring kid- I have never had to worry about her taking dangerous risks- normally, she’s too afraid to try new things.  Today, she took a risk, she decided to try it, and got a bloody nose.

I can’t decide if this is a good thing or a bad thing.  I don’t want her hurting herself, but I do want her trying.  I want to see her experiencing.  She is so sensory-oriented that it isn’t real to her unless she touches it, sees it, or gets knocked down by it.

I told her that we would try “being” blind and deaf again- but with more care.  After all, life knocks you down and you gotta get back up.  It’s important to know what others feel- even if you run into a tree.

As if to emphasize this point, TED’s video for today is RSA Animate’s exploration of the need for empathy.  Check it out…

August 26, 2010

Twice-Exceptional and Overlapping Labels

Filed under: Autism,Gifted,Twice-exceptional — Teacher Professor @ 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 — Teacher Professor @ 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 — Teacher Professor @ 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!
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