Professor Mother Blog

January 20, 2012

The Cure That Hurts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

January 19, 2012

Cut from the Team

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

August 14, 2011

Nearing Construction…

Filed under: Autism — profmother @ 10:29 am

I haven’t been around these parts recently…. 

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

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

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

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

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

June 30, 2011

Expanding and Tethering

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

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

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

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

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

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

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

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

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

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

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

**********

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

****

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

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

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

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

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

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

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

April 12, 2011

Happy Dads- Happier Moms

Filed under: Autism — profmother @ 8:21 am

Jones, L., Totsika, V., Hastings, R., Petalas, M., Dowey, A & Nash, S. (2011). Psychological well-being of couples with a child with an autism spectrum disorder. Presentation at the Gatlinburg Conference on Research and Theory in Intellectual and Developmental Disabilities, San Antonio, TX. March 2-4.

As promised, I said that I would share some of the results of the sessions that I attended at the Gatinburg Conference during the month of April- for Autism Awareness Month.

This group is from Wales- and apparently, Wales is a rockin’ place for autism research!  They looked at 160 couples who had a child with ASD.  Average age of parents were in their mid-40′s and the average age of the child was 10.  These are not newly-diagnosed parents- these were parents who had been in the “system” for a while.

I’m sure that it will surprise no one to learn that the the mother’s anxiety and depression was directly related to the child’s level of behavioral problems, level of symptoms, and pro-social behavior.  This is what I call “duh” research- but it has to be done in order to “prove” to funding agencies that the reason mothers are stressed out of their minds is because their child is struggling.  Sad that it has to be “proved”, but there you are. Good to know that research backs you up, hmmm?

But the really interesting thing about this presentation was the finding that dads were much more likely to have positive perceptions of their children with autism than the mothers.  The researchers suggested several reasons for this, including:

  • Dads tend to be less focused on the day-to-day situations
  • Dads tend to be less involved in the organization of a child’s life

And as a result, dads can take a “bigger picture” approach to their child’s issues.

And here’s another interesting finding: The more positive a dad was, the more positive the mom was- independent of the level of the autism. 

The biggest caveat the researchers stated is that these are the dads who have stuck around.  They also found that the longer a child had been diagnosed with autism, the happier the marriage was- but they also noted that that’s because they’re measuring marriages that lasted.  The unhappy marriages that had autism added to the mix broke up, and thus weren’t in the “happiness” measure later.  They very explicitly said that they did not recommend autism as a form of improving your marriage happiness level- there were wry chuckles throughout the audience.

So much of this research falls under “duh” research- but it was interesting to realize how much of my ability to balance my life and hold up under “those” times was dependent on my husband’s ability to make those inane cheerful comments- and to remind me of the good things of the children. While I tend to obsess about details, he looks at things from a broader perspective. 

Drives me crazy- but apparently, it makes me happier, too.  Thank you, honey.

April 1, 2011

April’s Blue Light Special

Filed under: Autism — profmother @ 9:12 am

Not KMart… Autism Awareness Month…http://www.lightitupblue.org/

We turn on our lights tonight.  I’m wearing blue.  Jess, from Diary of a Mom says , “While awareness is not the end-goal, it is the only means by which we will achieve it.”  You can read her impassioned letter to President Obama here.  Here are some really poignant excerpts:

“On April 2nd of this year, the world will join together in observation of the Fourth Annual World Autism Awareness Day. As you know, this day exists because it has to. Because our children’s ranks are now growing in undeniably epidemic proportions. Because 1 in 110 children are now on the autism spectrum. 1 in 110. Please take a moment to let the enormity of that number sink in. The numbers aren’t getting any smaller. And someday mothers like me – mothers of 1 in every 110 children – will no longer be here to take care of our precious babies…

We need a lot more than blue bulbs. We need research and a renewed and reinvigorated commitment to real scientific inquiry and critical thinking. We need the money that you promised to fully fund IDEA. We need sweeping legislative change. We need a federal mandate on insurance reform. We need passage of the ABLE Accounts Act and a reauthorization of the Combating Autism Act. We need affordable and appropriate housing for our children as they transition into adulthood. We need the money that you promised to allocate to autism services, research and treatment. And far more.“

In the 1970s, the Autism Society named April National Autism Awareness Month, and in 2007, the United Nations General Assembly declared April 2nd  World Autism Awareness Day (WAAD).There are tremendous things going on. 

  • On our local area, A&P Equipment Services in Jacksonville is offering Blue Doughnuts and Coffee.
  • Waycross Middle School is asking everyone to dress in blue on April 9th
  • In farther afield activities, the Empire State Building and Rockefeller Center are going blue today
  • The Sydney Opera House is going blue
  • The Thinking Person’s Guide to Autism is running a series of “This is My Autism” stories every day this month.
  • ….
  • Heck, even the Lebanese Autism Society is hosting a conference this month.  In the middle of war and social upheaval in the region, they note the seriousness and the importance of autism to the future of their children. 

I keep thinking of Jess’s words:

“While awareness is not the end-goal, it is the only means by which we will achieve it.” 

Please spread the awareness…

March 29, 2011

The Professor Part of ProfessorMother…

Filed under: Autism,College information — profmother @ 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…

Introduction:

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?”

Methods

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.

Sample

The 24 Caucasian parents who provided this survey data

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

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.
Discussion
  • 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 24, 2011

Little Girl Lost

Filed under: Autism — profmother @ 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

 

February 17, 2011

Can’t Get No Satisfaction- IEP version

Filed under: Autism,Schools — profmother @ 12:41 pm

A friend of mine from Vanderbilt’s Kenndy Autism Center and I are involved in some VERY interesting research- looking at parents’ and teachers’ satisfaction of how that IEP process works.  We all have our stories- heck, we all have our nightmares.  We go into an IEP like we’re going into a battle.  Sometimes it works.  Sometimes, it doesn’t.  But IEPs are stressful for everyone involved. 

But there’s little to no research out there about what makes a “good” IEP experience- and what makes a “bad” IEP experience for families and teachers of kids with autism.  Almost none.  So… that’s where we come in.

What I am asking my readers to do- teachers, parents- anyone who has ever sat in on an IEP of a child with autism- is to fill out a survey that we’re doing.  You might need to copy and paste the URL of http://tinyurl.com/mla3wm into your browser. AND please, please forward this on to anyone you know- anyone else who has sat down at that IEP table- on either side, and share your story with us.  The survey itself should take no more than 10 minutes.  It will help us communicate to schools, advocates, and parents how to makes this process better. 

There will be some questions about your zip code- and if you’re not in TN or GA, you will get a message that says “Routing problem“, and then continue to offer questions.  If you have TN or GA zip codes, you will be asked about specific TN and GA advocacy groups.  If you’re not in TN or GA, please keep on,  but indicate if you DO use an advocacy group.

All information is anonymous- there is no place to put your name or any identifying information- it’s just an online survey with no way to track back to you or your child at all.  So- go ahead.  Be honest.

I can’t emphasize this enough- We really, really want to hear from you.

IEP Survey for Parents & Professionals of Students with Autism Spectrum Disorders

What contributes to satisfaction with the IEP as written and implemented?

Is it…

1) Preparation for the IEP meeting?

2) Processes used for planning and conducting the IEP meeting?

3) Perceptions of the IEP meeting?

Please tell us!

Complete the survey at http://tinyurl.com/mla3wm
 

If you wish to take the survey on paper, call or email us with your address.

Lynnette Henderson, PhD               615-936-0448 or 866-936-8852
lynnette.henderson@vanderbilt.edu

Claire E. Hughes, PhD                 (912) 279-5848

cehughes@ccga.edu

February 15, 2011

Hand-icapped

Filed under: Autism,Home Things — profmother @ 1:37 pm

My first mistake was cooking dinner. 

That’s the joke I now give when people ask, with slightly averted eyes at the black, Frankenstein-like stitches sticking out of my finger.  Five of ‘em.  On my left pointer finger. 

It was last Monday- and I was bound and determined to cut the overly not-quite-ripe-enough spaghetti squash for the dish that we had had last month and wonder of all wonders- Ray actually loved.  I’m trying to really focus on making sure that our family eats healthy “stuff” after a free-for-all during the holidays.  So, I’m trying to cut this obnoxious squash with a very good knife- a Christmas present, in fact.  One of those enormous cleavers with lots of serrations.  Perfect for those hard jobs.  Only, because I’m frustrated and I was fussing at the children to do some task, I ended up banging the squash up and down on the counter.  When the knife flew out of the squash.  And glanced my finger on its way down onto the cutting board. 

Rats.  I saw the cut and sighed.  I stopped nagging the children and went to the bathroom where I put a bandaid on it.  Just a little line.  Not really a big deal.  On my left hand- not my writing hand.  And I went back to the kitchen to finish cutting the squash.  Which I did and put it in the oven to roast. 

It was then that I noticed that maybe my finger was hurting a little bit and I looked down to see my finger dripping on the floor.  Large drips.  Back to the bathroom to take the bandaid off to check this out.

And soon, my bathroom looked like a murder scene.  I’m not crazy about blood anyways, and this was… gruesome.  I called for the children.  Something about my voice got them off the couch and they came into the bathroom, where I was holding a gauze pad over my finger.  I was not hysterical.  I was not scared.  Just calm and clear.  “Children, I need your help RIGHT NOW!”. 

And this is where I learned that despite her growth and her progress, I cannot yet count on Elizabeth in a crisis.  She turned pale, turned around immediately and disappeared as far away from me as she could in the house- back in the back corner- where she waited it out. 

Ray, to his credit, stood there and asked for directions with an attitude that only a pre-teen can do.  “Yea.  What?”  He cut surgical tape in pieces for me- throwing away one that was minisculely too short to his eyes, and watched while I wound it around my finger.  I complimented him on his level-headedness.  ”Is that all?” he growled, and went back to his computer game. 

I looked at my gauze-wrapped finger again, and saw that the blood on the pad that I was applying pressure on so firmly was becoming soaked again.  I called my mother- because somehow Mother always knows how bad the hurt is even from a distance.  And so I called James and asked him to come home and take me to Urgent Care.  I turned off the oven.  At Urgent Care, I got lectured on the proper use of knives and that yes, it did need stitches because it was on the knuckle and it was deep, and I began to realize how very, very lucky I was not to lose the finger.  Or cut a nerve.  It hurt, and it needed stitches and it was large and ungainly, but it was still there.

Only, I couldn’t type very well.  I type- a lot.  I type my lesson plans.  I type my lectures onto Power Point slides.  I type on my book and I type to look up recipes.  I type to stay on Facebook and I type to stay in touch with my children’s teachers.  I could sortof type 9-fingered, but it was slow and it was awkward and you make a lot of typos typing 9-fingered.  A lot of typos.  And so, I’ve been hampered all week with my lack of communication.  I’ve let the blog slide and haven’t been on Facebook for a while.  I never realized before how my typing allows me to communicate- to plan- to think- to organize my thoughts.  I’ve been disjointed all week.  I’ve felt isolated. 

Tomorrow I get my stitches out.  Today, I took off the bandages and can move my finger freely and, other than a little pulling, with little pain.  And today, I can type again.  With full appreciation of how important even a finger is to keeping connected with the world.  And I have a far greater appreciation of my own fingers and how difficult it is for others with much, much greater communication issues. 

Elizabeth, with her own communication issues, who was so panicked that she couldn’t help me, has now decided that she’s afraid of knives- to the point of shrinking away from that part of the counter where they are kept and staying away from the dishwasher where they are washed.  This weekend, she moved her chair away from the knife we were using to cut the pizza (even healthy eating needs a break).  She has informed me that she will be having a private chef when she’s a grownup, so that she doesn’t have to work with knives.  She’s creating a phobia right before my eyes. 

I plan to start her rehabilitiation- right after mine.  I think that once my stitches are out and my finger less Frankenstein-y-looking, she’ll be better and I can start to work with her.    A little fear and healthy respect- respect that I regained- is a good thing.  Too much is disabling.  I plan on offering her a little steak in a few weeks- her favorite meal- and do a hand-over-hand therapy session.  Applied Behavior Analysis at its best…

And for the record, we ate the spaghetti squash dish the next day and it was delicious.

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