Sunday, July 18, 2010

RIP Mark Haskell


RIP Mark Haskell

Mark died yesterday afternoon when his plane crashed on takeoff. He was a wonderful family man, I had the privilege of caring for Alison's pregnancies and delivering two of his three children. He and his wife and family live just down the road from me. We see each other all the time around town and walking and playing with the kids. He and his wife, Alison, became one of my favorite patients, we just really connected. He loved to fly, he was a part of the Brunswick Naval Air Station Airshows with his YAK-52 named "Lizzy-Lou" for his daughter. He will be sorely missed.

Here is an article from yesterday, and another from today.

Monday, June 21, 2010

Gorski under Attack

I received the following message from Liz Ditz. I read the AoA article this morning and thought there might be trouble when someone listed emails and addresses from Dr. Gorski's boss and board members. Please send a message of support to Dr. Gorski's Board of Directors to counteract the smear campaign from AoA.

From: Liz Ditz
To: Storkdok
Subject: Gorski under attack
Date: Mon, Jun 21, 2010 2:44 pm
I had an email conversation with Gorski this morning. This is not fun for him as the AoA minions have emailed the entire list below with criticism of Gorski and alleged COIs.

Gorski said it wouldn't hurt if people who support and admire his work would send emails of support. It's better if the email of support only references the SBM article.

This is the science-based medicine article

http://www.sciencebasedmedicine.org/?p=5627




The age of autism article

http://www.ageofautism/ DOT com/2010/06/david-gorskis-
financial-pharma-ties-what-he-didnt-tell-you.html

The contact info that age of autism commenter "make autism stop" published

http://www.ageofautism/ DOT com/2010/06/david-gorskis-financial-pharma-ties-what-he-didnt-tell-you.html?cid=6a00d8357f3f2969e2013484b00ab0970c#comment-6a00d8357f3f2969e2013484b00ab0970c

Wayne State University Board of Directors:
Phone:
(313) 577-2034


Mailing Address:
656 West Kirby
Room 4231 FAB
Detroit, MI 48202

Board Members:

Tina Lynn Abbott bj4325@wayne.edu
Richard Howard Bernstein cu3121@wayne.edu
Eugene Driker as1223@wayne.edu
Diane Lynne Dunaskiss ag1268@wayne.edu
Deborah I. Dingell cz6530@wayne.edu
Paul E. Massaron aj0252@wayne.edu
"Gary S. Pollard" ec3616@wayne.edu
Annetta Thelma Miller ai2291@wayne.edu and annetta@wayne.edu 313-577-2034

Wayne State Office of the Secretary:
Julie H. Miller, Secretary to the Board of Governors and Secretary of the University julie.h.miller@wayne.edu
Teresa M. Boczar, Executive Secretary
teresa.m.boczar@wayne.edu and
ab8086@wayne.edu
Debra L. Harris, Lead Secretary debra.harris@wayne.edu


kim's comment (an AoA minion, edited email by me)

http://www.ageofautism/ DOT com/2010/06/david-gorskis-financial-pharma-ties-what-he-didnt-tell-you.html?cid=6a00d8357f3f2969e20133f188083f970b#comment-6a00d8357f3f2969e20133f188083f970b


Use sos's links to email the board of the school ASAP. from their website:
The Wayne State University Board of Governors and 2 of its standing committees will meet on Wednesday, June 23, 2010 in Rooms BC at McGregor Memorial Conference Center, 495 W. Ferry Mall, Detroit, Michigan 48202. The Standing Committees will begin at 10:00 a.m., and the Board meeting at 3:00 p.m.




--
Liz Ditz

check my personal blog: http://lizditz.typepad.com/
check my blog on academic remediation: http://lizditz.typepad.com/academic_remediation/
editor, The Thinking Person's Guide to Autism http://thinkingautismguide.blogspot.com/

Addendum:

Here is my message to the Board of Directors:

From: storkdok@aol.com
To: bj4325@wayne.edu; cu3121@wayne.edu; as1223@wayne.edu; ag1268@wayne.edu; cz6530@wayne.edu; aj0252@wayne.edu; ec3616@wayne.edu; annetta@wayne.edu; julie.h.miller@wayne.edu; teresa.m.boczar@wayne.edu; ab8086@wayne.edu; debra.harris@wayne.edu
Subject: Dr. David Gorski
Date: Mon, Jun 21, 2010 4:59 pm


To the Board of Directors at Wayne State University:

I wanted to write in support of Dr. Gorski and the research he is undertaking. In a recent blog he described the research he is doing with Riluzole and breast cancer. He described the history of Riluzole and it's use in ALS, how it was developed and then
Drs. Goydos and Chen discovered that it inhibited melanoma, continued research with melanoma and now have evidence of it's potential beneficial use for metastatic melanoma patients. He described how this medication could potentially be beneficial in the treatment of breast cancer.

Dr. Gorski has the ability to explain very difficult scientific and biologic concepts in ways that a layman (and even an OB/GYN!) can understand. He also is dedicated to the pursuit of excellence in science and in turn, science-based medicine, and has been very educational, as well as entertaining, on his blog. I have been following Dr. Gorski's blogging for a few years now, and have appreciated his skepticism and ability to verbalize what is pseudoscience, or quackery, and how to recognize it and effectively counteract it. As the mother of a child with autism, I discovered a whole world of non-evidence based pseudoscientific practices that are being used on children with autism. As a physician, I have appreciated his clear analysis of the specifics of autism quackery.

I am saddened that today I have learned that there is an attempt by the adherents of autism quackery to smear Dr. Gorski with supposed "Conflict of Interest" with a pharmaceutical company. Unfortunately, these are the same people who have attempted to smear, and have actually threatened, Dr. Paul Offit and other physicians and scientists who support science-based medicine and speak out about vaccinations not causing autism.

Because of this, I wanted to let you know I lend my support to Dr. Gorski and his research, medical practice, and blogging endeavors, and am very thankful for his efforts to educate and promote science-based practices.

Thank you for your time.

Yours Sincerely,
Storkdok, M.D.

Monday, June 14, 2010

A Totally Late Valentine's Day post

I know, I know, this is totally late. Life's been busy, but I just have to share the Valentine's Day card my son gave me. We went to Target and I told him he could pick out a card for me and for Dad, and for the grandparents. He very seriously started reading the cards and went through many cards before he found the right ones. Here is the one he gave me:

Mom

Long before
I could have known,
you knew
what I was capable of.

And so
you taught me
to dream
without limits.

You knew
the challenges
a lifetime could hold.
And so
you created
a safe place
for me to land.

You knew
what a difference
believing in someone
could make.
And so
you loved me
unconditionally.

And I can't
imagine
who I'd be today
without
your love.

Thank you, Mom.

Happy Valentine's Day

Love,
A

Now hand me the hanky, it makes me tear up every time I read it. What an amazing kid I have. I'm keeping this card out to reread whenever I doubt myself or am feeling overwhelmed.

Sniff.

Saturday, March 27, 2010

Smockity Frocks has sincerely apologized, and I accept her apology.

One of my more Smockity memories goes like this...I remember one day when my oldest son was just entering kindergarten, and my youngest was a very busy toddler. We went to Sabbath school and my older son, who is autistic, was moved into the kindergarten class. The expectations were a lot more, like sitting in his chair and following directions and listening, no talking unless asked. It was a complete disaster, he wandered around the room humming and flapping, but he was listening. I tried to get him to sit down but it was difficult with my toddler, who was also all over the place, and I had no one to help me (dh was working in the hospital). I have to say, the class was terribly boring. What kid wants to sit at a table and listen to a lesson being read from a study guide? Finally, the woman who was in charge said in a disgusted tone, "Can't you control your child? What is the matter with him?" (as if she didn't know, everyone knew he was autistic, it was a very small church). I was so frustrated and tired and her remark was so thoughtless, I replied, "He's autistic. What do you expect, robots? When something is this boring, it isn't going to engage him." And I took the boys and left.

As soon as we got into the hallway, they both collapsed to the ground in double meltdowns. I sat on the floor and tried to calm them, but it didn't work. I looked up and saw a group of 5 moms that I knew, I had even delivered two of their babies. They all gave me the "look". No one offered to help me get the kids out to the car. I couldn't carry both of them and I couldn't leave either of them to take one out to the car and come back for the other one. I had to wait until one kid could walk and slung the other one over my shoulder and ran to the car. We never went back to that church again.

So when Smockity Frocks wrote her piece and had it pointed out that the 4 year old girl in the library was probably autistic, and was unrepentant (until now), I'll admit it triggered emotions from long ago...anger, and even more so pain and sorrow.

This morning a friend told me that Smockity Frocks has apologized. This is what she said:

An Apology

by Smockity Frocks on March 30, 2010

From the very beginning, I have always wanted this blog to be a blessing, something to help others, and never to hurt. I wanted to make people laugh, even in the midst of parenting trials.

It has become evident that I have not achieved that goal. I have unintentionally caused hurt and pain and for that I am truly sorry.

When I described a situation I observed recently, I was seeing in my mind and describing on my blog behavior that I have witnessed dozens of times in my own seven children and hundreds of students during my eight years as a school teacher. The behavior I described was nothing more to me than childishness and impatience, but I can see now that the words I used were viewed as symptoms of autism and many people were offended.

The most grievous part, for me, is that this has brought dishonor to the name of Christ, and that is wholly the opposite of my life’s mission.

It is my sincere hope that this apology will bring healing and peace.

Given the nature of many of the emails I have received, please understand why I feel it is necessary to close the comments on this post.

I prefer not to hold onto the anger, because it only hurts me. I don't want to become bitter. I feel like we accomplished what we wanted to, making Smockity and others aware of more than a statistic, they realize our kids are everywhere, even in the library, and they will be more charitable towards our kids and any kid, even those who aren't autistic.

I think anger can be a good motivator, and I feel channeling it to make a difference in our kids lives, and the lives of autistic adults hopefully, is what my goal is. Who knows how many people who never commented, or those first 23 commenters on her blog alone, will now maybe not even just cut our kids some slack, but could possibly do something in the future for our kids?

If we hang onto the anger and continue to point a finger, it could backfire and cause resentment amongst those parents. They will effectively close their minds and not even try to think or help anyone with autism, or could even hold a grudge. That is what happens when people are told, "no matter what you say, you are an asshole, and I'm not giving you a second chance."

People make mistakes. If they try to understand a different point of view, and sincerely say they are sorry and have learned from their mistakes, I will forgive them. I have made and still make a lot of mistakes, and I hope people will forgive me when I say I'm sorry and am sincere about it, and change my thinking.


Smockity Frocks has apologized very sincerely. I accept her apology and wish her the best of luck in life. I believe she has learned from us and will not be judging a child's behavior nor mocking a child again. I think this is a very good start to "Autism Awareness Month". I know that I am grateful for having "met" a lot of special needs parents through the blogs and on Facebook in the last week. Even though many of us have are in different countries or have different point of views, we have found common ground in our children, and wish to make society better and more tolerant of those who are different...and maybe even, hopefully, embrace our children to celebrate in their uniqueness.


For me, this is what "Autism Awareness Month" is all about.


I would like to give a shout out for a blog called "Respect For Infinite Diversity". It is a wonderful blog by two new and dear friends:

A Call to Action

Where are the organizations that help individuals?

Where are the organizations that provide mentoring or someone to listen when you need an ear?

Where are the organizations that will help individuals find the help they need?

Help us become that place.

It's a start. A new beginning. A chance to make a difference.

Thursday, March 25, 2010

So this is what those Moms are thinking when they give me and my son "that look"

This morning I was cruising around the blogosphere, and I came across a post on Temple Grandin and her comments about manners. The reason I was looking specifically for Temple's comments on manners was that my son has had two incidents this week where he became emotionally dysregulated and had outbursts. These are generally far and few between now that he is older, and he is learning and using techniques from Michelle Garcia Winner's Social Thinking Superflex program, which my son's classroom teacher and speech therapist have introduced to his regular third grade classroom in a weekly session, with posters and regulatory strategies for many of the Unthinkables. I am of the firm belief that my children need to be taught manners. Of course, teaching manners is different for a child on the spectrum. I also would not allow my child to annoy or disturb other people in public. While I try to anticipate some of the triggers that might lead to a meltdown and prevent them, I was not always successful. No one can be 100 percent successful, but we all try. It was harder when he was younger and didn't have the ability to verbalize the overstimulation from noises or people. I have been very lucky to have met a lot of very compassionate people who did not judge us when he would suddenly meltdown. But there were always those people, for some reason it is the mothers, who gave us "the look". You know the one I'm talking about. It sends the message "why can't you control your child?" I always wondered what they were actually thinking. And now I know.

In the comments to the Temple Grandin post there was a comment from Smockity Frocks,
I just wrote what I meant to be a humorous post about an encounter I had at the library with a little girl and her over indulgent grandmother trying to pressure one of my girls to give over the computer.

I ended up with 3 different commenters defending the pair because of the girl's "signs of autism".

http://www.smockityfrocks.com/2010/02/in-which-...

I don't know what the girl's condition was, but I DO know that Grandmother could have done more to redirect her very annoying behavior.
This, of course, piqued my interest. So I clicked on the link to find a post entitled:

In Which Smockity Considers Jabbing a Ball Point Pen Into Her Eye

After reading the post, I realized, this is what those moms' "look" means. The judgmentalness and lack of compassion, mocking tone of and contempt for this little 4 year old girl who was obviously on the autistic spectrum by the excellent description of her hand flapping, inappropriate social behavior, her perseveration on waiting patiently and reminding herself, and her Grandmother's very obvious behavioral approach that was appropriate for her emotional age, well, it smacked me in the face. The Brits call it "gob smacked". And that was just the post. I tried to excuse this woman's behavior as ignorance. But then I read the comments.

That's when my blood boiled. After the first 22 comments that are basically high fiving her, someone very nicely brought up that the little girl probably had autism. And so did the next commenter. Her reply again highlights her judgmentalness and lack of empathy yet again. Upon reading comment 25 with her excellent approach and explanation of autism and this child, I thought, yeah, maybe she'll get it. Then she said,

I still don’t understand why the grandmother never once offered to distract her by reading an actual BOOK to her while they waited. It really did seem to me that the goal was to get rid of my daughter so her precious could have her way.
What? did she really just say that after a great explanation of how hard it is for a very young child with autism to wait patiently? What a...

I read on. I got to DeputyHeadmistress. She's the one with the original blog about manners, btw. She states that the Grandmother lied and tried to manipulate Smockity's girls. What. A. Crock. There is nothing that would indicate this in the original post. This woman says she is the mother of a special needs child. That is when she shares her post on Temple Grandin's manners discussion, which is taken completely out of context. Great manners there, DeputyHeadmistress. And Smockity agreed with her. The commenters continue, with an excellent explanation at 29, then a few agreeing with the OP, and finally I got to Jennifer at 35. I could have kissed her when she spoke of the judgmentalness of the OP! The best part of her comment was,
I don’t think you were really demonstrating patience. You might have been on the outside. But inside you were very frustrated. Nothing wrong with that. But I found it interesting that you were boasting of your patience and receiving lots of praise for it. Sounds a little like the same scenario as the lollipop sweetums waiting for the computer. Ironic huh?
YES! SCORES! And how does Smockity answer her? Is she introspective? Does she step back and take a serious look at her behavior? No, she answers by saying,

How supportive and encouraging of you to stop by and chastise me for my boastfulness. I guess that bit about mothers “working together and supporting and encouraging one another” doesn’t apply to you.

First of all, I “assumed” it was a grandmother because the girl called her by the name “Grandma”, but maybe part of her “disability” is calling people by inappropriate names and I am just too dumb and judgmental to know that.

And no, if the girl had been 2 and a half, I wouldn’t have expected less of her or her grandmother. I have reared six 2 and a half year olds so far and I do not allow them to get their own way because I feel they are more precious or special than others.

Lastly, I wonder if you realize the irony in calling me out for being judgmental. Pot? Meet Kettle. I don’t think you are being very patient with me. How do you know whether or not I have a disability that prevents me from tolerating bratty behavior?

GOB SMACKED!

Smockity, you are devoid of compassion or empathy. You are one of the most sanctimonious judgmental mothers I have had the displeasure of meeting by reading your blog. Would it have been so hard to have said to the Grandmother, "My daughters just started using the computer and will be using it for a while." instead of sitting there, giving the Grandma and little girl "the look". We know it when we see it.

And all this while reading a Bible. How appropriate.

And that's why I posted your blog on Facebook at 10:38 a.m. And I am so happy to say I am Blogger Zero, and your post, Smockity Frocks, has gone viral, all over Facebook and Twitter and the blogosphere.

May I help you with your ball point pen?


Here is a compilation of posts on Smockity Frocks.

Thursday, March 18, 2010

Friends?

My son has been saying he wants to have friends, he wants to have them over for a playdate, and he wants a sleepover party for his birthday. I've talked with him about making and keeping friends and that we are working towards that goal by using the Social Thinking Superflex curriculum at home and at school.

Today a boy who had been in his first martial arts class moved up to A's class, and they said hello. A then said it was nice to see him again! After martial arts finished, they all came into the lobby, and A pulled out his iPod and started playing flick fishing, and instantly this boy and one other new boy to the class came over and sat down. A showed them how to play the game and he let them try it! He told them how to do things and they all 3 crowded around to watch the others play. I have never seen this before, it is new. There was give and take in the conversation and he participated in it!

When I talked to A about it on the way home, I told him that is how boys play with each other! He wants to have this little boy come for a playdate! Maybe he could bond over games or Wii!? He wants a friend very badly. I see him gaining skills for play now with his younger brother. They have been playing with shared imagination for months now. I see his skills grow and mature as he learns how to have a conversation and share ideas while they play! Their latest ideas have been playing pirates and chasing aliens. We've apparently got a lot of pirates and aliens in our house!

Update on the Anxiety and OCD symptoms

Well, my son has stopped washing his hands so compulsively, they have healed up! He has been on a low dose of fluoxetine prescribed by our developmental pediatrician, and for a week now, he has not subjected anyone to an inquisition coming out of the bathroom about whether they washed their hands or not. No side effects, either. He is much more relaxed!

The other problem behavior was nose picking compulsively until he bled. It interrupted school work and at home because he had to wash his hands and it would happen dozens of time throughout the day. At school they tried to get him to use a kooshball instead and to remind him not to pick, but it didn't work. This weekend I asked about 50 questions to try to figure out why he was picking his nose when he knows there are germs and he has the germ phobia. I finally figured out his nose was dry and itchy. I started having him put Vaseline in his nostrils in the morning and at night, and it has stopped!

Yay! I'm looking forward to this spring and summer, I'm hoping the bug phobia will be more under control so he will enjoy playing outside!