Professor Mother Blog

April 27, 2012

Negative Review

Filed under: Autism,Book- Parent's Guide — profmother @ 5:41 pm

I don’t obsessively check the stats over at Amazon on my book, Children with High Functioning Autism: A Parents’ Guide  (I used to when it first came out- and oh, let’s say for a while longer), but I’ve moved on… I hope it sells well and I’m planning the next one.  But every now and then I have to refer to it and link to it.  And today, I found this… the first negative comment.  Ever. 

This book is fun to read for first coming parents, but not for parents who already try many therapies for their children. Half of this book says how smart her daughter is-everything is above average, no developmental delay, and gifted. Half of this book says so many superficial information without conclusion.
I bought this book because I wanted to know how to educate my son in the public school, not Montessori or private school. No informative at all.

I’m ashamed to admit that my first reaction was defensive- What does she mean- “no(t?) informative at all”?  Did she READ the section on how to have a good IEP?  Did she READ the part about trying the “gold standards” of ABA and speech therapy first and then, if there is left over money and time, trying other things?  Did she READ the part about how my daughter’s language and social skills were delayed?   

Until I realized, her review wasn’t about the book at all.  Her review was her frustration…

  • Her frustration that having tried it all, everything, followed all the books, there are still no good answers.
  • Her frustration that autism is so highly individual- that one person’s story doesn’t capture HER autism, her reality, her needs.  One person’s story can never capture that. 
  • Her frustration at a school system that is probably unprepared, undertrained and even, at time, oppositional.  But oppositional and unprepared in their own way that one book cannot answer how to deal with HER teachers, HER IEP needs, and HER school system. 
  • Her frustration at how the needs of her child continue and morph, and what were answers before are no longer sufficient. 
  • Her frustration at this amorphous thing we call “autism” that has no absolutes and no recipes to follow and no clear sense of direction.

Every mother of a child with autism realizes, after a while, that they are walking their own road.  There may be others, and books, and communities who walk alongside with you for a while and then diverge, but in the end, it is your own path.  There is support, there is love and there is help.  But it is your path.  And while you are not alone in your fights, your battles are as highly individual as you and your child and your family and your school are. 

I am truly sorry my book was not the help she was needing at that moment.  I don’t know her, but if she read this blog (although probably not, given  her reaction to the book!) Ms. Lee, somewhere out there, there are many people and many books who can help.  Truly help.  But you have to remember that the most important resource you have is you.  YOU know your child.  YOU know your school and YOU know yourself.  No one knows your story better than you. And while you may not find THE answer, there are lots of resources to help you find ideas- ideas to help you moving forward and to know that you are not alone. 

And did you READ the Resource Guide at the back?   

A quick list of some AMAZING Resources:

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

Author’s note: Personally, I MUCH prefer reading these comments:  :) But I want to emphasize to everyone to just keep reading and reaching out…

This book is great. I felt it was written for me. I feel the same way she does and I highly recommend this book for all those moms who feel they are alone. I have learned so much.

Very informative and eye opening book. It has helped me not feel so alone in this world & gave me some more insight on my son who has high functioning autism.

April 16, 2012

Happy Sensory Birthday

Filed under: Autism,Home Things,Twice-exceptional — profmother @ 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 autism, 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.

April 12, 2012

Underneath the Water- Or Why I Don’t Blog Like I Used To

Filed under: ADHD,Autism,Home Things,Tourette's Syndrome,Uncategorized — profmother @ 11:39 am

Ray’s guidance counselor described it perfectly the other day as we were determining the need for a 504 Plan for him.  ”If you’re working this hard to keep everything ok, perhaps we should document it.”

There’s a phrase that goes something like this “Be like the duck- Calm on the surface and paddling like hell underneath“.  Yes.  And oh yes.

Here’s the thing- things ARE “ok”.  Ray is getting Bs in school,he’s got a few really good friends, and life is not a series of dramatic challenges.  And we’re working really, really, really hard to manage the environment so that he’s doing all right.  When I describe how things are, I get a lot of “Oh, that’s him being 9!… Sounds like he’s being a boy!… Ease up on him, Mom!…”

I have come to realize that his anxiety disorder has created one in me.  Every time we leave the house- to go to the movies, to go to eat, to go to the beach, it’s resistance.  He doesn’t want to leave the house.  Ever.  If we force him, however, he goes.  He doesn’t throw a screaming, hysterical fit.  What he does do is get mean and ugly and “irritable”.  But he goes.  He either relaxes and we have a good time or he doesn’t, and manages to ruin it with his “hmphing”s and growlings and nasty comments.  Until the next time we leave the house again and it never gets easier.  Never.  My husband and I have discussions “Is this worth the fight we’re going to have?”  Every single time, it’s a fight.  And the simplest of errands becomes a battle of wills.

We pick our battles carefully, because it’s important to be consistent.  It’s important to win the important ones, “Yes, you have to go to your cousin’s wedding.. yes, you have to eat three pieces of spinach” and give choices in the unimportant ones, “Do you want to go see ‘The Return of the Titans’?… Do you want spaghetti or tacos tonight?”.  And then there are the “Is this worth the scene it’s going to cause?” issues.  Should we force him to do a sport?  Should we ignore the incessant dribbling basketball in the house?  Should we provide incentives for him to sleep in his room when he wants to sleep in the living room or at the door to our room?  Should we …?  Every thing we do, we have to plan out with the forethought of a general- “What choices can we provide?  Is this worth the battle it’s going to be?  What is causing this resistance and how do we work with this?”  We have to steel ourselves to being stronger and more positive than he is going to be.  Every time.  Except when he’s not.  And we’re tired.  We’re so tired.

The thing that gets me is that these issues are not unique to Ray.  I know 9-year boys.  I taught 9 and 10-year old boys for years.  They are contrary, wonderful, on-the-brink-of-teenagers-but still rational and snuggly.  It’s not the types of challenges- it’s the intensity of challenge that he poses.  I often feel like a whiny, paranoid parent, because these are not unusual issues.  I constantly have to judge- “Is this MY problem or Ray’s problem?”

But then there are the “Things are just not right” moments.  Today, as I took him to the doctor for a bronchitis diagnosis, and I watched him with his arms wrapped completely around himself, rocking with anxiety, avoiding eye contact, and growling at me when the doctor or I tried to talk to him, my heart broke a little bit, but I feel validated that “No, it’s not just me”.  There’s a strong-willed child, and then, there’s… this.  When things are not “right”, he retreats into his own area of misery, rocking and growling and losing his language.  And getting things right is constant juggling, balancing, paddling like hell.

I haven’t been blogging about this because I’ve been very carefully constructing his environment and planning the battles.  He’s hanging in there.  He’s getting Bs because he gets 100s when things are well-balanced, or he gets 20s when something is off.  He has a few friends and their families tell me how sweet and nice he is.  He’s polite.  Teachers tell me they don’t see any real behavior problems other than he’s a little active.  He’s not aggressive and has never hurt himself, anyone or anything.  But I haven’t been able to blog because it feels like it would be a continual litany of “This is so hard… this is so hard… this is so hard…” and I can’t go there.  I can’t let myself sink into the morass of sadness and frustration and depression that lurks- under the surface of “Everything’s ok”.

But I’m tired after this year of keeping things as even as possible, as managed as possible and as positive as I can be.

To hear the guidance counselor support the work that we’ve been doing felt good.  I cried when I heard someone recognize that although things look calm on the surface, we’re paddling like hell underneath.

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. 

Next Page »

Theme: Rubric. Blog at WordPress.com.

Follow

Get every new post delivered to your Inbox.

Join 32 other followers