Negative Review

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:

• Autism Speaks- www.autismspeaks.org
• Book- Thinking Person’s Guide to Autism
• Autism Society www.autism-society.org
• Families for Early Autism Treatments www.feat.org
• International Society for Autism Research http://www.autism-insar.org/
• Treatment and Education of Autistic and related Communication-handicapped Children (TEACCH) www.teacch.com
• National Association for Gifted Children www.nagc.org
• Council for Exceptional Children  www.cec.sped.org
• University of California- Davis Medical Investigation of Neurodevelopmenal Disorders (UC-Davis MIND) Institute  http://www.ucdmc.ucdavis.edu/MINDInstitute/
• And if you happen to be in Southeast Georgia, The Triumph Foundation http://www.thetriumphfoundation.com/ 

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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.

Happy Blog-iversary to Me!

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

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

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

I started the blog for two reasons:

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

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

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

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

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

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

I like this pool…  Thanks for having me!

The Space Between

You cannot quit me so quickly
Is no hope in you for me
No corner you could squeeze me
But I got all the time for you, love- Dave Matthews- “The Space Between”

In London, while you’re waiting for the “Tube” (aka the subway, the metro, the large underground train), there is a wonderfully recorded British female voice intoning “Mind the Gap”…. (series of incomprehensible directions)… “Mind the Gap”…   They’re warning you to pay attention to the space between the train car and the platform.  It’s a narrow gap and there are bright yellow lines attracting your attention to it.  I made the mistake of looking down the gap one time when I was getting on the car, and was struck at how dark and deep that hole is.

A girlfriend of mine is approaching that gap.  She’s not in England- she’s in danger of losing her job.  She’s casting about, worrying, wondering.  She sees the line of where her present life might end, and isn’t quite clear about what comes next.  She sees the end, but not the next shore.

I’ve been there; you’ve been there- we’ve all been there. And that gap is terrifying.

That space between this- the known- and that- the unknown.  The space between what was, and what will be.  The space between when you don’t know how deep it is, how dark it is, or how long it lasts.  When was what- even if you complained, even if you whined every now and then, represents familiarity and comfort and stability.  Where you knew what you dreamed about and what you sought to be.  But the gap- that space is one of unknown dreams and unknown directions and unknown challenges and unknown possibilities.  It means living in the moment because the past is too painful to think about, and the future is vague- where you define what is essential to you- your life, your family. 

There are names for this space between.  Depression.  Grief.  Transition. Coping.  Learning.

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We’ve all been in that Gap, that space between- it’s part of growing up.  For me, there have been job losses, sweetheart losses, parental losses.  There have been family shifts that were in that place.  Certainly, the space between is not limited to autism parents.  But if you’ve been there- that unique space defined by the label “autism” and its other hobgoblins-  it indelibly changes you.

In my last post, Elizabeth asked “So, now what?” and her comment brought back to me one of the most powerful “spaces between” that I have ever encountered.  That place where we had a label; we had a name for IT- the whateveritwasthatwascausingproblems- but that was it.  We had a word to Google and we had a word to describe IT.  But then… what then?  We were in that space between- between what “is” and what “was”- vague worry and new realities.  Between not knowing that there were choices, and making decisions.

And while I was in that gap, I was silent.  I was screaming on the inside, but it was everything I could do to talk to my husband and my mother.  I alternated crying with reading.  I had no words when I was in the gap. There were days I could barely get out of bed, and days that I couldn’t go to sleep.  The space between is a place that is dark and muffled and you feel like you’re drowning in a ocean of blackness.  I would swing wildly between throwing my energies into action and complete hibernation.

Therapy helps.  Jess, in a wonderful post, reminds us all how sharing the burden can help- that when you are least capable of asking for help is the very moment that you must ask for it.

Research helps, too- sometimes.  Googling the word “autism” gives you 10 million hits- 10 million stories, bits of information, truths, a few lies, products, lots of studies and even more speculations.  Nowhere in those web pages did I see something that said “This is what it is for you.  This is what it is for Elizabeth.  This is what you should think, feel, and DO.  This what you can expect and this is what you should dream.  And this is what you can no longer plan on.  This is what your new normal is.”

For that, I learned to read blog posts by mothers going through it; I learned to read books by mothers who had gone through it, and I learned to read blogs by people with autism and Aspergers.  They couldn’t tell me about MY family, or my normal, but I could see their “normal”.  I could see how the science of research turned into the art of living.  I could see how they had made it through the ocean of their between-ness onto their own more stable shore.  

For now- because one of the things you learn about this shore on the other side of the space between is that it changes, it shifts, and the presence of the space lurks.  A major moment like a milestone or a holiday can put you back there; or a minor moment like a glance from a stranger. 

Having reached our own shore, our own place of understanding what this the whateveritwasthatwascausingproblems/ butisnowpartofourlivesandwhosheis, I appreciated the ones who had gone before.  People like Mom-NOS, Susan Senator, and Patricia Stacey.  I felt that support as a hand reaching out to me to pull me out of the gap.  I was deeply grateful.  And now, I feel the support of other mommy bloggers who are still going through it with me- not pulling me out, but helping me navigate through it.  And I am deeply grateful.

For that reason, I want to reach a hand back to those who are in their own gaps- the space between identification and a new normal.  The place of “Now, what?”  I wrote my book as a way of helping others- just as I was helped.  I blog to reach others who are Googling.  I know what a community can mean to those who are drowning.

To those folks- and to any others like my girlfriend, I want to say “You are not alone”.

If you are hurt and angry and frightened- you are not alone.

If you are depressed and tired and worried- you are not alone.

If you are struggling with autism, read my book “Children with High Functioning Autism“, read “The Boy Who Loved Windows“, read The Autism Mom’s Survival Guide, read Gravity Pulls You In, read Diary of a Mom, read Elvis Sightings, read Unother One, read Autism Mommy Therapist, read Big Daddy Autism read Ballastexistenz.  You are not alone.

Mind the Gap, but know that in the space between, you are not alone.

So Many Stories

I had a book signing in Jacksonville yesterday at Barnes and Noble from 1:00-3:00 where I was at the front of the store as people came in.  It was a lovely day- had I been home, we would have been outside on my bike, or at the beach.  I got a People magazine to read in case I got bored.  Not a chance.  Being at the front means that people stop and talk to you- particularly when they saw the title of the book “Children with High Functioning Autism”.  Seeing the word “autism” makes people stop- and they start to talk.  I talked with-

• The mother and teenage son who had a neighbor with Aspergers who went to the Youth Group with the son.  Their frustration with the neighbor child.  The worry that their son would start to hate Youth Group because of this child.  Their realization that the child was “different” but believing that the boy was using it as an excuse to misbehave and get attention.  My attempts to convince them that, no, he wasn’t doing it in intentionally, but that he wanted attention- and bad attention is better than no attention.  If they really wanted to change the dynamics, they needed to notice when he was doing the right thing.  They wandered off, not convinced.  Believing that he was different, but that he could change- with God’s help.  That maybe they could understand it out of him.  That they could make him well.

• The teacher who taught his first year in an upper middle-class school to “get his chops” and then transferred to a school for kids with attention disorders, but a lot of the children also had autism.  He now teaches in an inner-city school, where children go undiagnosed, and disabilities are the least of the children’s issues.  How he will probably be leaving teaching because of the pressure to connect pay to school performance.  How he loves kids who are different, but can’t perform miracles. How he’s tired of the system that asks him to make kids who are ignored and abused and who don’t have their existence noticed, much less their disabilities.  Much less their abilities.

• The grandfather who spoke broken English who stood in front of my table with tears in his eyes.  “Do you think that a DVD about telescopes will be too much?  He’s 13.  He loves science.  We don’t know what to do.  This he loves.”  I said “Yes- buy the DVD.”  Barnes and Noble thanked me, I’m sure.

• The young man with Aspergers who has a degree in film who was there with his mother.  Who discussed his favorite movies with the teacher who was still there.  Who loved college because he didn’t have to pretend to party, but could study all the time.  Who was really cute, but had never had a date.  Who was bussing at a restaurant because he couldn’t find a job.  Whose mother had another son who was also bipolar and who was also at home, but had dropped out of college.  Who didn’t have a passion that drove him.

• The little 5-year old girl who, with her mother whispering to her, asked me “How did you write a book?”  I had a lovely conversation with her about  how I started with an idea and just sat down and did it, how it took a lot of fixing to become a real book, how my daughter wanted pictures and color, too, but it was all words and I was sorry there weren’t any more pictures for her.  How the PhD after my name meant that I went to school for 22 years and how I loved teaching teachers.  Her mother told me that she wanted her daughter to meet a “real author, particularly a woman”.

• The grandmother of a 13 year old boy who poops in the bathtub.  She is frustrated and angry and grossed out.  Her grandson lives on the computer and hates school.  Her husband tells her that the child should be the one to clean up the messes, not her.  I suggested that she set up a positive reinforcement system.  That she talk to others.  That she find a support group.  That she reads- books other than mine, which is really more for parents of younger children.  That she knows that she is not alone.

• And one aunt of a child who has just been diagnosed with autism at age 4 and whose sister, the child’s mother, is grieving.  She bought a book.

It was quite the two hours.  Overall, I sold three books that I wrote, but I am so much richer and full of stories.

Interview with the Author

Prufrock Press, publisher of “Children with High Functioning Autism”, has just released their interview with me… it’s a bit odd to read about myself in the third person, but I hope that you enjoy it!  A shout out to Lacey, and her colleague Jenny, who are the world’s greatest editors/marketers/interviewers/promoters/supporters… name the job, they do it!

In other, terribly tacky and self-promoting news, I will be in:

• Jacksonville St. Johns’ Barnes and Noble this Saturday, the 10th from 2:00-4:00
• Nashville at the Council for Exceptional Children from Wednesday the 21st-23rd, and
• Dallas, the next Saturday the 24th at the Preston Royal Barnes and Noble from 2:00-4:00.

It will be quite the week, but I’m looking forward to seeing old and meeting new friends!

Book Signing with Friends

I just have to share how much FUN the book signing was in Louisville!  A bunch of my old students, who are now grown-up teachers, came and brought some other teacher friends of theirs.  I felt a little like a rock star, a little like an old lady teacher and a lot like someone who knows why I went into education- teachers make the nicest friends!

I also met a couple who were grandparents of a child with autism and they were full of questions- really interesting questions.  I was amused when I realized that the man and I had taught together at Bellarmine University! I was touched when I realized they were “professor-grandparents”- interpreting with a similar process that I used when I was going through the diagnosis and treatment with Elizabeth, but the emotions and passion of grandparents.  It was nice to recognize each other- and not just through work.  We recognized the “oughtism” that happens when you realize something and think “I’m a teacher.  I OUGHT to have known/been able to find/realized/learned… ____”.  They are very different- teaching and parenting- and grandparenting.  We’re all searching- and all finding our own way.  I realized early on that being a professor of teachers didn’t “help” me at all as a parent (although, interestingly enough, being a parent DOES help me in teaching)- but it did help me interpret the language of what I found out.  It was nice to meet another searcher who also understood the language, but not the path.

And best of all, the Summit Barnes and Noble was doing a fundraiser that night for a preschool that specialized in serving children with autism.  It was the night of April 1- the Light it Up Blue night when the tower in Miami, Toronto’s CN Tower and the Empire State Building were all lit up in blue.  I wore my blue shirt and skirt and celebrated the fight for awareness with my friends.

Quite a moment of awareness….

Signing in San Antonio

Well, I did my first ever book signing this past Friday in San Antonio… and it was a- well, different experience.

When I present at a conference, there are rows of chairs all facing me.  For about a half hour or an hour, I talk.  I generally have a power point with “talking points” and some visuals, some points of humor and a conclusion.  People come to hear me because they want to learn something that I have researched or have thought through, and it will help them in their own research or their own teaching processes.  This… wasn’t that.

When I teach, students are in small groups and I am at the front of the room or walking around, facilitating their learning, setting up activities for them to come up with their own answers, their own meanings, their own way of doing things.  I am a ringmaster, with the students actively contributing, but I direct them, coordinate the timing of things, and ask for responses to questions I have planned ahead.  I am trying to take them somewhere, to master a set of objectives.  This… wasn’t that.

When I talk with fellow parents, we sit in a circle or across a coffee table from each other.  Everyone is equal and the conversation flows.  One person asks for opinions, for information and we poll the group to get the best responses, to explore the wide experiences that everyone in the group has.  We talk about our day, our concerns, our hopes and share moments.  This… wasn’t that.

What is was… was a strange amalgam of all of these.  The chairs were in rows facing me, but I was not there to lecture.  I had passages from the book highlighted, but no power point.  I was extremely happy and honored there was ANYONE there!  Most of the people there were my family, who are interested in what I have to say, but only vague interest in the topic.  My editors were there- who knew the book better than I know it myself.  And some parents were there.  I talked with these fellow parents, found out why they were there, why they came out on a Friday night.  I asked questions, and I facilitated responses.  I shared what I knew and I heard from the other parents of experiences that are not my own.  I made recommendations of other books besides my own.  I talked about the book, some, but I talked about the experiences of parenting a child on the spectrum.  I formed a small support group.

And I learned.  I learned about one dad, who is struggling with his 8-year old son with Aspergers and his worries that the support system came too late, and how the pain of the diagnosis is harder on him than on his son.  I learned about one mom whose son has name-the-label and her struggles with the school system and medical professionals to think of him as one child, not many labels.  I learned of one mother who has multiple family members with autism and is struggling to raise her children.  I tried to facilitate, to share, and because it was my job being there at Barnes and Noble, to discuss my own book.  However, I found other books that they needed to read as well, more resources that they needed to tap.  “Calvin and Hobbes” came up more than once- as analogy, as a book to read, as a support for their own child.

I left exhausted.  I know the role of professor- I love presenting and teaching and writing.  I know the role of parent- I love sharing and commiserating and dialoguing.  I’m not sure of my role of “author/book signer”.  I found myself craving the familiar, the routine: the language I use when I’m a professor and the language I use as a parent.

Afterwards, everyone clapped.  One parent left, book in hand, but no signature.  Did she buy?  I have no idea.  I misspelled the name of the dad who handed me a book he had bought, in ink.  I wrote “oops” next to the misspelling.  I felt terrible.  I signed books that my family bought out of family pride and one book for an aunt-in-law who could not be there , but has a son with high-functioning autism- ready for college.  They have already lived the diagnosis/fighting with the school/treatment routes.  My book comes too late for them.  I signed more books for the bookstore to keep as “Autographed by author”.

Next time, I’ll stand in front of the table, rather than sit behind it.  I’ll learn about more parents.  I’ll share some information/facts/suggestions in my professor role.  I’ll share with fellow parents.

My mother asked me if I had “fun”.  I’m not sure… but I know that I’ll learn even more… the next time.

Louisville, April 1st.  Barnes and Noble at the Summit.  Hope to see you there!

Table of Contents

Just an overview of what is in the book…   Throughout it, there is a metaphor of finding your way- because really, isn’t that what parenting really is?  For more of a glimpse of what is really IN the book, please go to Amazon.com and read Chapter 1!

Table of Contents

Introduction- Mapmaker

Chapter 1- Starting the Journey: From the Beginning and Even Before

Chapter 2- The Landscape and its Signage

Chapter 3-  I Don’t Think We’re in Kansas Anymore, Toto: Diagnosis

Chapter 4- Down the Rabbit Hole: Treatments

Chapter 5- Education: Joining the Highway

Chapter 6- Are We There Yet?

Chapter 7- Siblings, Spouses and Other Passengers

Appendix: Travel Agents and Fellow Mapmakers

Really Real

I’m standing here looking at the book- the REAL book, with real pages, a real cover… and my name on the bottom.  It’s more than a bit surreal.

People ask me “How long did it take to write?”

My answer: “9 years and counting”.  For this book is a snapshot of our lives so far- the fear, the joy, the challenges- and the learning.  I am lucky enough to have a job where writing is considered part of what I do- and normally, I write to other professors or to teachers.  But this is to fellow parents, and it’s exciting and scary and thrilling- all at the same time.

Like any author, I’m rather attached to the book.  I’m nervous about people not liking it- those are MY thoughts, my experiences and my hopes that are out there now for public.  As a rather shy person, it’s a bit challenging to put yourself “out there”.  Criticize me professionally or intellectually, and I will happily engage in debate.  But attack my family and I will fight back.

And that is the most terrifying of all- this is my family I’m putting out there.  Names are changed; some experiences are glossed over; and permission was granted- but how much “informed consent” can there be from a seven- and eight-year old?   Ray and Elizabeth love the idea of a book- but they have different views of what “happened”.  Elizabeth has already corrected me- “Mommy, I LOVE Hannah Montana”.  And I do NOT want them to think that THEY made me cry- but to know that it was the autism and Tourette’s that made me cry.  It was my own feelings of inadequacy that made me cry.  I love being a mother and I love being a wife.  These things do not make me cry.

But I also love being a teacher.  And part of being a teacher is constantly looking for opportunities to share with others so that they can learn.  I know how hard it was for me- and how much research and how much reading I did when we were going through diagnosis and treatment and learning family strategies.  Part of being a teacher is watching what you do and planning ways to share that with others so that they can learn also.  I didn’t want another parent to do this work again, without having a resource.  And so, I sat down to write and to share and to reflect.  It helped me to write.  It helped me to think about what we had learned.  It helped me work through what had helped and what I had needed.  I hope that it helps others.

And here it is- solid and real.  I hope that others can learn from our experiences.  I hope that my professional knowledge can be shared with other mothers so that they have an “insider” helping them.  I hope that it makes a difference.

Book Tour Update

I will be at the Preston Royal Barnes and Noble in Dallas, Texas on Saturday, April 25th from 2:00-4:00pm signing copies of “Children with HFA”.  Would love to see all my Dallas friends there!