Teacher Professor

April 27, 2012

Negative Review

Filed under: Autism,Book- Parent's Guide — Teacher Professor @ 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:

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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.

April 16, 2012

Happy Sensory Birthday

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

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

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

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

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

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

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

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

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

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

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

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 — Teacher Professor @ 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.

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