G’s Place

I have been neglecting this blog, blame it on midterms.

But I wanted to post this story about how Autism Speaks lobbied back-room deal that made a bill to ensure insurance companies covered treatments for autistic kids pretty much useless. The autism community rallied around the PA House Speaker, the one who introduced the bill (who has a nephew with autism btw).  Apparenty Autism Speaks was playing political games to get a national insurance policy in place (would that too be watered down? Is this what happened in FLA - where autism services are horrendous?)

Wow. Autism Speaks has an “Autism Votes” initiative. They are a very powerful lobbying agency.  And they think people like my daughter need to be cured. Very Very Scary.

An autistic person on aspieweb.com created a t-shirt that says: “Autism Speaks” can go away - I have autism I can speak for myself.

Autism Speaks contacted Zazzle.com (the online store aspieweb was using to sell the shirts) and had them pull the shirts for copyright infringement.

So, have they actually copyrighted the term “Autism Speaks”? Or are they just bullying the autistic folk who are sending out a negative message about the charity?

I’ve been thinking about the teacher who let the class vote on whether a disruptive classmate should be allowed to return to class. I don’t have anything from my daughter’s younger years to compare this to. Except RAA Middle School in Tallahassee Florida.

This school had a dress code, just like the elementary school where the kid got voted out of class. This school also had an insane principle. She was cruel to my daughter in many ways. Brianna was never disruptive, she is in fact very shy. (I know, hard to believe a child with my genes could be shy, but it’s true). She always was concerned with following the rules to the letter - she still gets very upset if she is breaking a rule of any sort.

Well, RAA’s dress code required the students to wear a belt. Brianna had at least two detentions for not wearing a belt. For the second offense, she realized she had forgotten it and went to the office to tell them. She started crying, and the principal later told her - oh I remember you - you are the little girl who cries.  The dress code also required that all shirts be tucked in. I can’t remember if she had problems with that - it seems like she did.

The worst violence inflicted on my daughter by that woman was when Brianna was tested for disabilities. She had a 25 point split between her non-verbal and verbal IQ scores. They decided that even with this clear indicator of a disability, she did not qualify for services. I asked what would happen to her if she failed - as she was doing great on all of her tests, she was having trouble keeping up with assignments. Obviously she was learning, what would holding her back do for her? I will never forget that evil woman’s face as she told me: “She will learn to be obedient and follow the rules.  That is what she will learn”.

Thank goodness her pediatrician saw things differently - he took the test scores and sent her someplace that diagnosed her with sensory integration disorder. And thank goodness I am stubborn as hell. I knew that principal was wrong. I knew I had to figure out how to help my daughter.

Which leads me to this:

The environment in which the teacher who allowed the class to vote that child out of the classroom may not be an environment which allows her to understand differences. The school has a dress code - that is an indicator of control. Most of the public schools who have instituted dress codes are in lower socio-economic backgrounds. Thanks to Jeb Bush and One Florida, Florida schools must attain a certain grade or they lose funding. Many of the Florida schools have used the dress code as means of instilling discipline -control - in their students. Even though studies have proven that the uniforms don’t really change things.

For students with sensory difficulties, being required to wear clothing that is uncomfortable or to keep the clothing tucked in can be a nightmare. The sensory difficulties can induce a fright or flight response. I wonder if that is at the root of this kid’s outbursts - maybe just having an accommodation for the sensory issues induced by the uniform would help.

To someone who has never had to deal with a child with sensory issues, the meltdowns do look like behavioral issues. Think of this teacher for a sec, if the sensory issues are at the root of the problem here. She probably has no idea of sensory issues, she just knows she has to make the little boy act a certain way. How will she ever learn if the entire autism community comes down on her? What she did was awful, but we have a responsibility to turn it into a teaching moment.  She can’t hate kids and be a kindergarten teacher - I just don’t think it’s possible.

But she could have misinterpreted what was happening with this little boy. This little boy’s parents are also new to what his issues are. Those of us who have been down that road with our kids, or those of you with the same issues, please try and show some patience. Let’s try to make something good come from this very horrible situation.

If anyone from Morningside Elementary reads this, this article would be a good place to start. Actually, maybe admitting that what you did was wrong would be the first place to start. Then working to educate yourselves and the parents of the little boy about how to help him succeed in school should be your goal.

Dear Mrs. Cully,

My name is Gina Minks. I am a Florida native, although I now reside in New England. I am a product of Florida public schools in Okaloosa county. My Undergrad degree in Information Studies in from Florida State University, and I am currently pursuing a Master’s Degree in Instructional Systems from the Educational Psychology and Learning Systems Department at FSU. Currently I work as a Senior Technical Education Specialist at a global information company.

However, my most important role is as the mother of two children. My children also started their educational careers in the public school systems of Florida. One of those children was diagnosed as having Asperger’s Syndrome four years ago, right before she headed off to college.

I am writing to express my shock concerning a story that is circulating about one of your kindergarten teachers,  Wendy Portillo. From what I can gather from the stories, she used a student’s constant trips to the office as a way to enhance a classroom lesson on tallying. She had the boy stand at the front of the class, and had each student vote on whether the child should be allowed to return to class. Once the class voted him off for being annoying and disgusting, she had the boy figure out where he should spend the rest of his day, since “no one in the office liked him either” and he could not go home since his mom was at work.

As an educator,  I cannot fathom ever treating a student in this fashion. In fact, I would lose my job if I were to try this sort of instructional method with an adult. Apparently the boy’s behavior was disruptive enough to merit you recommending that he be tested for an ASD. I applaud you for sending this boy to testing so early, I would have given anything if my daughter had been diagnosed at that age.

Unfortunately, my daughter had to endure 12 years of taunting and teasing before we figured out why she was different. That bullying never came at the hands of the teachers, however. The teachers my daughter had always tried different ways to reach my daughter, and were receptive to trying different methods I found as we narrowed in on the cause for her different ways of behaving and thinking.

As a parent, I am just floored and speechless over the methods of this teacher. I cannot imagine what I would have done if either of my children had been treated in that manner, or if they had been instructed to participate in this type of group project. I fear your staff member has not only made an irreparable mark on the student who was “voted off the classroom”, but also has made lasting marks on the peers of this boy.

Please act immediately to repair the damage that has been done. I can’t imagine that a woman who teaches five-year-olds could have initiated this activity because she hates children. I believe she probably thought at the time that this was a good learning lesson. As a mom, I strongly suggest that your team gets training on what autism is, how it presents in children, the different ways that girls present, and what are the best ways of engaging these children in the classroom. The methods this teacher used had the opposite effect of what I believe the teacher was intending.

Please do the right thing by this boy and all of the other different minded children in your school. Please make sure your teachers understand that this sort of lesson is completely inappropriate for any child. Please use this as a teaching moment for the children in that class, so that they can learn about bullying and the effects it has on other people.

Sincerely,

Gina Minks
http://www.ginaminks.com

Bev at Asperger’s Square 8 posted this story about a 5-year-old (that would make him a kindergartener I think..) who was voted out of the class by his peers.

Seems he got sent to the office for being disruptive. Once the boy came back to cliass the teacher, Wendy Portillo, asked the other students if they were ready for him to return. She had the little boy stand in the front of the class, and one by one the other kids told him what they thought of him. They called him “disgusting” and annoying”. Then they voted whether or not he should get to stay in class. They voted him off the classroom, and the boy spent the rest of the day in the nurse’s office.

She claims she did this because the class was learning about tallying (WORST.SCAFFOLDING.EVER!!).

Oh, did I tell you that the boy is being evaluated for an autism spectrum disorder? The same one my daughter has?

The Autistic Self Advocacy Network has the list of who (and how) you can contact to voice your shock and disgust about this issue. Details here. I’ll write one and post it later. I am too upset and angry to do anything respectful at the moment.

If Alex’s family happens to read this: I am a Florida native (now living in New England). I know how bad the schools are for kids on the spectrum, but we didn’t experience anything horrible until middle school. Please love your baby and let him know he IS special, and no one is ever allowed to tell him any differently.

MEH!!!!!!!!!!!!!!!!!!

This story is via Asperger Square 8

So, some guy in Canada decides to “run for autism”. He invites some autistic folks, who politely decline. Mostly because the guy publicly spoke about how autism is a terrible burden and we must find a cure!!

The autistic folks explained they couldn’t support his run because of those statements, and what response do they get?

“Haha oh sh*t” (sent from a Blackberry).

That kids needs to learn how to use email. He obviously meant to forward that message, not reply to it. But it shows how much he knows about autism, and also how much he really cares about this cause.

This seems to be the kid’s media contact:

Alex Bittner at: alex.bittner@runthedream.ca, 888-507-5885 ext. 4

Here is the main website: Run the Dream

Here is his blog 

There is a facebook group

So I am watching Vh1’s Rock the 80s hour - a commercial comes on about VH1’s autism campaign.  People need to really start thinking CRITICALLY about what these cure autism campaigns are telling you:

•  All of a sudden all of these kids are being diagnosed
•  No one knows where it comes from
•  THERE IS NO CURE

So, does that mean perhaps in previous generations, autistic kids were misdiagnosed with something else? Do the kids grow out of it? Is it possible autism is genetic? Is it possible there is no cure because it’s a different way of being?

The site is actually better than the commercial - which is very horrible. We need to stop thinking in terms of a cure, and start thinking in terms of education about differences. We need the full spectrum of people in order to have a fully functioning society.

A study found that having a schizophrenic parent or a mother with psychiatric problems roughly doubled a child’s risk of being autistic.

OK, so is it possible that the adults who had these problems and then had autistic kids were just misdiagnosed as well? Maybe this just proves autism is genetic.

The article I linked to specifically says: “The association between a child’s autism and mental illness in the parent was strongest with schizophrenia”.

For the record, my ex-husband was diagnosed with schizophrenia.

Bev over at Asperger Square 8 has had a couple of thought-provoking posts on the topic of what is “awareness“.

I thought I relate an awareness story (it beats writing my paper).

Brianna and I were in ToysRUs, who have a program going on right now with Autism Speaks. So there are posters up all over the store, with puzzle pieces missing. Brianna say this one:

….and gave it a new caption. It was something like “Doh! The puzzle is why can’t you people figure this out? I’m fine - it’s the rest of you that don’t understand!”

Anyways, maybe Brianna will comment and tell me how I got that wrong.

Bria picked it out. It’s called “Aspergers and Girls“. It’s actually pretty interesting - it would have been nicer to have read it five years ago.

I wonder - are they planning to make one called “Asperger’s and Women”?

There is a good chapter called “The Launch: Negotiating the Transition from High School to the Great Beyond”. It talks alot about how parents have to shift from totally supporting the aspie young woman to being a partner with her. This is a hard, hard thing to learn. Bri and I are getting there.