Teacher Professor

March 29, 2011

The Professor Part of ProfessorMother…

Filed under: Autism,College information — Teacher Professor @ 8:41 am

In early March (It feels about 4 1/2 years ago, but really about 3 weeks at this point), I attended the Gatlinburg Conference– a conference that focuses on “Research and Theory in Intellectual and Developmental Delays”.   Despite its name, it was not held in Gatlinburg, TN, but this year was held in San Antonio, TX.  Apparently, there’s a wonderful history of how a bunch of people found common research interests one day while they were in Gatlinburg, and it’s been a tradition ever since.  There were people from around the world who research in the area of autism and IDD and other syndromes that I am ashamed to admit that I had never heard of.  As a newbie, I was often asked, “Is this your first Gatlinburg?”- and  I had to answer “Yes”- but it won’t be my last. 

At this conference were psychologists, psychiatrists, and neurologists.  I was one of the few teacher educators there- and I had a wonderful time wandering in and out of research topics and data that inform what I do and what I tell my students who are future teachers, but I can’t actually do myself.  There were genetic manipulation of mice to determine effects of medication on “autistic mice”, hospital interventions and large-scale statistical modeling that crunch numbers in way that I can only admire.  Throughout it all was a profound sense of respect- for children, for families. 

Throughout the month of April, as part of Autism Awareness Month, in addition to my Blue Light Bulb, I’ll be sharing tidbits of research that I’ve found- about kids, about interventions, about families. 

But to start it off- I wanted to share my research that I and Dr. Lynnette Henderson from the Vanderbilt Kennedy Center presented on IEPs. 

And I want to emphasize that this is the FIRST wave of research- we would LOVE for parents AND teachers to participate in the ongoing study… PLEASE click HERE and tell us what you think about the IEP process…


Previous research has found that parental satisfaction with both the process and the outcomes of the IEP is highly related to professional etiquette and the parents’ level of education (Miles-Bonart, 2002), as well as the quality of ongoing academic achievement data that has been shared previously with parents (Green & Shinn, 1994). 

Parents of children with physical or health impairments reported having significantly less satisfaction with their child’s IEPs than other areas of special education (Miles-Bonart, 2002), a finding consistent with reports that the more complicated a child’s educational needs, the less likely parents of children with autism were to report satisfaction with their child’s special education program (Bitterman et al, 2008).

Such satisfaction levels among parents of children with autism were also found to be inversely related to the amount of time that a child had been in special education (Spann, Kohler, & Soenksen, 2003).

As part of a larger survey examining parental satisfaction levels regarding the IEP, we sought to tease out factors that might explain parental satisfaction with their child’s IEP. Because of the high levels of correlation, we’ve chosen to look at the relationship of parental satisfaction to:

“To what extent do you feel decisions were made among the school personnel before the IEP meeting?”


Parents of student with ASD were asked to complete an online survey of their perceptions of the IEP meeting, and the planning process,  their preparations for an IEP meeting, and their general satisfaction with the planned IEP and the actual educational services provided.

Study data were collected and managed using REDCap electronic data capture tools hosted at Vanderbilt University. REDCap (Research Electronic Data Capture) is a secure, web-based application designed to support data capture for research studies, providing:

1)an intuitive interface for validated data entry;
2)audit trails for tracking data manipulation and export procedures;
3)automated export procedures for seamless data downloads to common statistical packages; and
4)procedures for importing data from external sources.


The 24 Caucasian parents who provided this survey data

  1. spoke English,
  2. were in their 30’s and
  3. had some college education

The importance of parental involvement has been recognized for 35 years since PL 94-142. IDEIA 2007 continues to legislate the collaborative intent of the Individualized Education Plan (IEP) and the importance of addressing parental and student goals and concerns during meetings.

Despite this emphasis, parent respondents in our sample felt that decisions were made among the school personnel before the IEP meeting more than expected (M= 74.71, 95% CI 63.26-86.16).

The extent to which parents perceived that decisions were made before the meeting was not related to the child’s social, communicative or behavioral characteristics, but was inversely related to the child’s age. Relevant qualitative comments from the survey included:

  • The ‘system’ makes the decisions and parents do not have an equal voice when there are 10 school personnel and a parent in the IEP.  They just increase their numbers if you increase yours.
  • In regards to the IEP process, placement was predetermined, there is nothing offered in (County schools) but a 12 hour a week special education preschool classroom, and every child is expected to fit into this program. A program is not designed for each child. Best practices are not even close to being met and when questioned administrators will remark about current research but are not able to state what research or provide a copy to support their view. They also could not provide me with any data on the efficacy of the programs offered for ASD kids or even agree to keep daily data on my child. No matter what I asked or offered the team of 9 employees present would stick together supporting their predetermined planned.
  • The younger the child, and the fewer IEPs the parents had participated in, the more parents perceived that decisions were made before the meeting.
  • A finding that does not support the study of Spann, Kohler, & Soenksen, 2003
  • Parents who had sought out advocacy training perceived themselves to be less excluded from the decision-making process.
  • Experience with IEPs may be the driver of these results, since other correlates included consulting the student, and the student attending the IEP meeting, which tend to happen with older students.
  • The perception that decisions are made without parental input tended to correlate with other aspects of parent empowerment  and satisfaction in the parent-school collaboration.
  • Not only does education of parents correlate with parental IEP satisfaction (Miles-Bonart, 2002), but so does education of the professionals.
  • Perhaps school personnel with a more thorough understanding of the needs of students with ASD may be more comfortable seeking information from parental input and observation and may be more convinced of the benefits of parental participation in the IEP.
  • School system personnel can improve parental satisfaction with the IEP and its effectiveness, as well as build long-term relationships by educating parents of young children and suggesting advocacy training during early IEP interactions, as well as communicating with parents of young children prior to the meeting

This study is limited in its generalization by the homogeneous preliminary sample. Data collection continues.


What was very amusing were the differences in the “So what?” implications that Lynnette and I reached.  Her “solution” was for school districts to encourage parents to seek out advocacy groups.  Me- knowing school systems- suggested that it might be wiser for schools to provide information up front and to provide additional time and information to parents of children who are newly diagnosed with ASD.  While parental satisfaction might be increased with an advocate present, I have a feeling that school satisfaction would not… but it’s just a hunch.

So… PLEASE if you’re a teacher, or a parent of a child with ASD- PLEASE go to the web site: http://tinyurl.com/mla3wm and tell us what you think!  Your responses are anonymous and no results can ever be traced back to you. 

March 28, 2011

Complaint of a Gifted Child

Filed under: Home Things,Schools — Teacher Professor @ 6:15 pm

Ray just posted his new blog… I warned him of the consequences, but he said, and I quote “Oh bring it on!”.  This, folks, is a twice-exceptional child…   Wanting challenge- but aware of what is hard for him.  Miss H- please be kind to his poor mom who has to help him with all of this…

March 24, 2011

Little Girl Lost

Filed under: Autism — Teacher Professor @ 11:01 am

I keep forgetting that Elizabeth has autism.  I mean, I know that she has autism, but generally, she copes with it well.  I have come to think of her autism as a chronic condition like mild diabetes- you learn to live around it.  We use lots of pictures in our communications; I explain in story format and use lots of scripting to help with social skills; chewing gum helps divert repetitive stimming behaviors and the sensory challenges- well, sleeping wrapped up like a mummy in a closet really isn’t the end of the world.  She does have autism, but it is soooo much less- so very much less of an issue that it was when she was a toddler and in preschool.  We’ve normalized to autism and it has normalized to us.  It took tears and time and therapy- but we’re in a good place. 

Only, like diabetes, every now and then her autism rears its ugly head and becomes a real problem.  Our autism- and everyone’s autism is different- seems to come and go.  Like a storm, it comes, dumps on us all, and then drifts away, leaving wreckage in its path.  Tiredness can trigger it.  Overstimulation can trigger it.  Only, sometimes they don’t- so there’s no real pattern to it at all.

Yesterday- yesterday was a storm of autism.  I’m not sure if there was a trigger.  I’m not sure if it was time for the dam to break or if our coming and going and my unusual spate of traveling set it off.  I’m not sure about much.  But by the time I was alerted to it, it was too late and we were spiraling down that path.

It would almost be easier- maybe- if I knew the path.  We well know the path with Ray.  The responses are well-established with Ray- no matter how erratic the pattern.  But with Elizabeth- we were in uncharted territory.

I first got an inkling when I got a knock on the door- and Faith- a little girl from around the corner was crying and said “I don’t think Elizabeth’s being a very good friend,” and proceeded to tell me what Elizabeth was doing.  Elizabeth had been riding bikes with Emily, Tracy and Faith, when she upset Faith by teasing Faith about a boy that Faith liked.  Faith got upset and yelled at her.  That was enough to put her over the edge.  The upshot was that no matter what her friends were saying to get her to communicate, she was spinning in circles, chanting another friend’s name- part of the name “Gret!  Gret!.. Gret!”  Then, she would dart over to them, pull their hair and then, as they were yelling at her, spin and chant “Gret!  Gret!”

Normally, when she is in Autism-Land, we can snap her out of it- isolating her and enforcing quiet.  Comforting her does not help – she just spins more.  Comfort helps later, when she’s processing.  But quiet and isolation is where she finds her center.  I was rather upset at this emergence of autism that has been so, so, so very dormant for so long, that I grabbed her and placed her in her room- meanwhile thinking of the social fall-out.  Emily and Tracy- who are fairly tolerant, have rarely seen this side of her.  Their eyes were enormous and I went back outside to calm them down and try to explain.

How do you explain autism, when I don’t want to isolate her by giving her a label that really is a very small part of who she is now?  Yes, Elizabeth has autism, but she’s also gifted; she’s also in 4th grade; and she’s lived all over the country- she’s so much more than one single label.  And so, I explain it using a concept of her brain.  I tell them that they know that in her brain when she’s tired or anxious, she can’t find the right words and she just reaches for a word that makes her feel better.  She wasn’t being a bad friend- she just could not find the words today to tell them how she felt.  Soon, she’ll be better.  They just need to give her space.  And they need to know that just as she loves them, they love her and you try to understand each other when you’re friends.  They nodded, looking solemn and sympathetic.

However, back inside, Elizabeth was packing her bags.  She emerged from her room, rolling suitcase in hand, and announced “I’m leaving!”.  Just then, the phone rang.  I informed Elizabeth that no, she wasn’t running away, she needed to go to her room and we would deal with this later, and I took the phone call- a friend of mine who rarely calls, and was calling to tell me of the death of a common friend.  A sad phone call. Elizabeth stalked back to her room.

During the brief “Oh no!  How?” conversation, Elizabeth stalked out of her room, rolling suitcase in hand and headed out the door announcing “I’m leaving!”  I recognized her words and her actions and the way she was holding her head- a combination of the running-away scene in “Ramona and Beezus” and our friend Vicki’s “running away from home” story.  And knowing how the scripts go, I let her go.  I watched her walk out the door with my stomach hurting from the intensity of it all.

Ray was hysterical.  At first, thinking she was dramatizing and playing along, he locked the door behind her- peeking out from the curtains to encourage the laugh.  Then, as she turned the corner, he spun around and said “She’s GONE?!  And you’re going to LET HER?!”

Do you know how hard, hard, hard it is to watch my lovely daughter, in “that” space where only a set of scripts are giving her any guidance, walk away with her suitcase in hand?  It’s a kick in the stomach and I can see the edges of panic.  I know that the script says that Ramona (and Vicki) would go to the edge of the woods and that she would wait and that she would turn around, having realized that maybe, maybe running away wasn’t the best thing to do.  But I didn’t remember the script of what Ramona’s mother said to her. I couldn’t remember what her mother did, other than let her go and then go get her and hug her.  Vicki just came back home- so I wasn’t even sure what script Elizabeth was playing out in her head.  And what if… what if she really did keep going?

And so, I calmed Ray down, told him I was going to get her, and by the way, I also had to let out Tom’s dog, a friend of ours who is in the hospital.  I got in the car, and drove around the corner- to see Elizabeth trudging back with her suitcase, limping along.  “Hey,” I said. “I’m going to go and let Kirby out for his evening break.  Wanna come along?”

Sure!” Elizabeth said sprightly, with no attitude, no remonstrations, no sulks, and no tears.  The script had been broken and we were back.

She was focused and present during the whole time we were at their house- we talked about Tom’s status, and how they were dealing with the recent emergency that we were trying to support them through.  We worried together and came back home to get food we had gotten them.

But as soon as we got home, the script kicked back in, and Elizabeth burrowed into my bed, wrapping the covers all around her.  She wouldn’t let me hold her, just kept spinning in the covers.  I asked her “Why run away?  Why not just hide in your room?  Hide in the back yard?  I won’t bother you- you can have all the time you need to be by yourself?  Or we can talk about it when you’re ready to talk about it.”

I didn’t want you to know where I was,” she said.  “I wanted to be lost.


My heart just broke. I still don’t know what I should have/ could have said to that.  I ended up telling her that when she’s lost, I am terribly, terribly worried, and that she does not want to ever hurt anyone that badly.  That we can talk about anything, that there is always a place for her.  I always love her.  And that she is not safe when no one knows where she is.  I flooded her with words, all while holding her tight.  And Ray was part of the discussion so that he knows that running away is not an option. 

I wanted to be lost“… those words echoed an photograph we have of her when she was a little bitty girl… when autism was crashing into our lives and she was pulling back.  There are images of her two-year old self where she is looking out at a world that looks confusing and scary- and I have always called the picture “Little Girl Lost“.  She started pulling away into her own space, into her own world.  I had just read “The Boy Who Loved Windows” and I spent an awful lot of time on the floor for the next two years- engaging her, engaging her, engaging her.  Bringing out her language- one slow word at a time.  Making her laugh- making our world a happy, fun, safe place for her to live.

Apparently, like the chronic condition that autism is, we’re going to have to convince her again that this world really is a place where she wants to be.

Little Girl Lost- We dressed her up here. She was cooperative- but retreating

A more typical pose- we call this one "Paparazzi". She loved the boa and the drama of the outfit


March 21, 2011

“0” Birthdays

Filed under: Home Things — Teacher Professor @ 9:02 am

My husband is 50 today.  50!  A few short weeks after my daughter turned 10. 10!

Elizabeth was two weeks old when James turned 40.  I was so fried from the demands of a newborn and the intensity of feeding, fussing, jaundice and no sleep, I stuck a pink bow on her head and called it “Happy birthday”.  I claimed that I gave him his first child for his 40th birthday- and really, there’s no better present than that!

We celebrate “0” birthdays- big.  When I turned 30, I was in Williamsburg, and had a huge party with all of my friends there from graduate school.  I danced in a dress from Mexico- all flounces and color.  Pictures show me with stars in my eyes, glowing with happiness.  James and I had met three months before, I was in love, and surrounded by new romance, friends, and sense of direction.  It was an amazing birthday.

When James turned 40, we were in Fort Myers, FL.  I gave him a daughter.  Pictures show us with circles of exhaustion under our eyes, I’m still in pajamas- the same ones I wore for a week straight, I think.  My mother was there and she was holding us together in those first days of new parenthood.  But we were alight with the joy- and the anxiety- of the future.  It was an amazing birthday.

When I turned 40, I celebrated by having most of my very close girlfriends meet me on the Outer Banks of North Carolina-including my mother and my daughter!- where we walked the beach, had massages and pedicures, watched mama foxes scout ahead for her kits, and talked until late into the night.  We talked of how our directions were changing, how the future was different than we expected, but how important friendship and love really were.  It was an amazing birthday.

And now… now Elizabeth and James have “0” birthdays in the same year.  And this year- full of anxiety and challenges-… these birthdays are promises.  Promises that I hope we can keep sooner, rather than later.  Promises of traveling- going to England and watching Manchester United play a game- a real one- at Old Trafford Stadium, rather than merely watching on TV.  Promises of “stopping by ” Paris- since we’re over there, anyways, so that Elizabeth can see the Eiffel Tower- the real one.  Promises that were so close to reality… but aren’t.. yet.

Instead, Elizabeth got a card with a picture of the Eiffel Tower, and James got a card with a picture of the very hotel we’re going to stay in Manchester.  Elizabeth invited 5 of her friends over for a manicure/pedicure/ sleepover night- which, while it wasn’t quite as challenging as last year, still had its challenges.  Challenge that are not new ones- ones that some down time, some quiet time can solve.  Really- not even worth talking about.  It’s been 10 years of learned lessons.  But there were pancakes and presents and lots of giggling and a shared joke of “single digit midget… OH, double digit midget!”  And Red Velvet Cake.

And James will enjoy dinner at home in Georgia with my Chinese Chicken after a long week of traveling- with his family and we will have balloons and singing and posters and pictures of Old Trafford Stadium- and Lemon Cake.  And promises of not now- but soon.  Perhaps in time for Ray’s “0” birthday next year.

No matter where we are, there are friends, and family and love surrounding us all.  And even though autism and Tourette’s are uninvited guests, this year, they are well-mannered, mostly staying in the backgrounds where we accommodate around them.

Amazing birthdays. (And look out Eiffel Tower- we’ll get there! And please forgive me a little bit of pouting)

March 19, 2011

Lost, But Making Good Time

Filed under: Home Things,Schools — Teacher Professor @ 10:44 am

We’re lost- but we’re making good time! Billy Crystal in City Slickers– originally by Yogi Berra

Do you see this photo?  The one lane, rutted dirt road that led away from the washed out bridge and then consequently led to a series of switch-back one-lane tractor tracks?  This road that led me round and round through Deliverance country- lined with Walmart mansions and trailers?  AT 5:00 in the morning? This is the road that my TomTom-GPS took me on from Fayetteville, AR to the Rogers XNA airport- which is, on the (visual) map, a few double-lane roads away.  28 miles away.  That took me 1.25 hour to traverse on tractor paths.  This is that road.

I was going home from a long three days of watching teachers try to include kids- kids who needed peers, who needed access to the general curriculum and kids who needed information to be presented in visual ways, or in smaller chunks, or in ways that kept their attention- kids who through no fault of their own needed something different and who needed grownups to teach them in different ways.  And watching teachers who could and did, who couldn’t and didn’t, and everything in between.

After swearing at the Tom-Tom, and jolts of anxiety waking me right up without coffee at 4:30am and praying, praying that the GPS signal did not fade out in the depths of the Ozark mountains, I wound up on a paved road, 1/2 mile from the airport- successful in my path. I was shaking, traumatized, and resolved that I would never again depend on my GPS, but use my own sense of visual awareness to consult a hard copy map.  (A promise quickly broken, btw, as I crossed the state of Georgia looking for the Duluth High School where the state Chess Championship was held- next post!)

As I sat waiting for my flight, I thought about the possible metaphors for my trip- the parental search for treatment for autism- going from one thing to another, going to places you had never dreamed you would find yourself, trusting- and losing trust- in yourself and your sense of direction.  A sense of palpable relief when you find you’ve made forward movement.

I thought about how teachers are in search of strategies to help children, but are lost in a confusing mix of “this is how it’s always been done”, relationships between teachers, confusing directives from administrators, and not seeing themselves and their classrooms on the path, and losing their way.

And of course, I thought of my children as they grow up, and how they will follow certain paths that don’t look like the beaten paths; at how many washed out bridges we’ve found and will find, and how many switching tractor paths they are going to go down as they navigate schools, and relationships and love and…

And as I say there in the airport, waiting for my plane, I finally realized that it didn’t really matter which metaphor I picked.  In the end, we were on our way home.

March 17, 2011

I Don’t Know How She Does It

Filed under: Home Things — Teacher Professor @ 7:26 pm

Things fall apart; the centre cannot hold- W.B Yeats- 1919

I just finished reading “I Don’t Know How She Does It” by Allison Pearson and wow… just wow.  It takes place in London and is the story of a working mother with a high-powered job as a financial money manager.  Other than some minor differences (you know, like the issues of flying across the Atlantic on a moment’s notice and discussing how to pick a good nanny), the story was written to aggravate every bone of guilt I have.

Kate is balancing the needs of two children.  She feels guilt at how much she resents her children from taking her away from doing a job she loves- and she resents her job from taking her away from her children.  She goes on vacation and tries to bury herself in the role of perfect mother and wife.  She goes to a board meeting and tries to bury herself in the world of work.  She notes that women are not allowed to be late because of children’s issues- but men are applauded for parenting.  In an excerpt… How do you say you have to leave early because the baby is sick without saying a) baby and b) leave?” “When a man excuses himself from a meeting to attend his son’s game, he is patted on the back and when a woman needs to leave early she is not ‘committed enough’?”

Gender inequities aside, the tension between work and her children is not what you would expect.  She writes in an email,”What kind of mother is afraid of her own children?” She ends up not sending the email because, “There’s only so much you can confess, even to your dearest friend. Even to yourself.”

And lest you think that I read the book while lolling about, waiting for the children to come home, I read the book in an airport- traveling to San Antonio for a conference, and to visit my dying grandmother for probably the last time- multi-tasking, even in grief.  I read because I was not going to pay for Internet in an airport.  I read it when I knew that my children, while being taken care of by James, would be challenged.  That Ray would not be doing his homework; that Elizabeth’s 4th grade girl dramas would be misunderstood by a busy Daddy; that James would be too busy being one parent that the other role would be missing even more because of its absence.

These past weeks have challenged me: too many observations, things to grade, chapters to write, conference paper to write, homework to help with, laundry to do, pounds to work off- my life is so far off balance, out of normal, that I can’t even see the pivot point.  I vaguely remember writing- I vaguely remember laughing- I vaguely remember… me.

For the reality is that my mothering role is the linchpin that holds my family together- and, as I’ve learned this past month- me.  Without the schedule, the routine, the comfort of tucking them in, listening to their day, and fussing at them for homework- including James in those routines, I lose touch with myself.

It isn’t as though I’ve lost my sense of humor, or my desire to dance, or even my love of all things chocolate, but I’ve lost my sense of timing- the sense of reflection- the sense of planning.  I’ve lost my writing.

Anxiety has been the driver this past month.  The sense of moving from moment to moment and being surprised when I got there.  As I overheard someone say the other day “I don’t know where I am.  I’m whereever my calendar tells me I am.”  While I am not planless, as in the days of diagnosis and treatment, I do find that I am moving from moment to moment just as I moved from therapist’s appointment to therapist’s appointment.

I finished the book while waiting in an another airport to go on a consulting gig- a gig that I needed to do to pay for the new car, the birthday party, the life that we have that is so finely balanced that more than two events in a row throws the whole thing off kilter.

At the end of the book, Kate quits her job and moves to the country.  She points how, when people say “I don’t know how she does it,” there is an implied perception that judgement that something is missing, something is slipping.  Moving to the country is, unfortunately, is not an option we have, and so I wait for the end of March- the end of this slipping, the end of this calendar-driven chaos.  I wait for the center to form again.

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