Preparing for the AANE panel tomorrow

Tomorrow I am speaking at AANE’s panel about college students with Asperger’s. I am one of the parent representatives on the panel.

I am working out what I am going to say (I have eight minutes).

Here’s the key points I want to make:

• Find a social skill coach. Someone who does not work for the University. This person should take your place as your child’s advocate. It should be someone you can work with, but someone who will be your child’s confidant (in other words, sometimes they may not tell you everything!)
• Realize that some of the feelings you have when your child goes away are normal “empty nest” feelings.  Now, these feelings may be amplified because all of a sudden you are forced to be out of the loop. I think it’s important to let go, but it’s important to realize there aren’t books or articles or anything to help us (parents with kids on the spectrum) figure out if it’s really time to let go.
• Take everything the college tells you with a grain of salt. They are so scared of “helicopter parents“. To an administrator who doesn’t understand Asperger’s Syndrome, we may seem like parents who are too interfering.  If you encounter college officials like this, make sure you have the social coach. Let the social coach deal with the college. It will be better for your child if they learn how to rely on someone else.
  Also, call every day if you need to. We were told at orientation not to do that, but my daughter called every day at 9PM. It helped her settle down. I also would go and see her, and stay overnight with her, at least once a month. We stayed in a hotel, out of the dorm, and gave her a chance to settle down a bit. She found coming home a little too much of a schedule and environment change.

I don’t know what else to say tomorrow. Hopefully it will go over well. My daughter will be there to keep me honest.

Online Sources to learn about Asperger’s Syndrome

Someone on Twitter asked me for links about Asperger’s Syndrome. I thought I would compile something quick.

• The best resource I use is the Asperger’s Association of New England. They have resources for children, teenagers, college kids, and adults. They also have resources for people in an aspie’s life. If you are in New England, you should really consider joining. It’s pretty inexpensive.
• I like reading Asperger Square Eight. It’s a blog by a woman with Asperger’s. I take what I read from her and see if my daughter sees things the same way.
• I’m in a Facebook group called When Days When an Asperger’s Kid is not fun.  Our kids are amazing, and when you finally get to the place where you can see how they come at the world differently it changes everything. You can advocate for them, you can help them learn to advocate, you can communicate with them and it helps  with the family situation. But they are still kids, and they will make you crazy. On top of that, family and others won’t always understand why you have changed things to accommodate your child. That can drive you crazy too.
• My daughter wasn’t diagnosed with Asperger’s Syndrome until the summer between her senior year and college. One resource I used while she was in school was the NonVerbal Learning Disorder site. The have articles on advocacy (or how to become a partner with school staff and still fight for your child’s rights, and definitions on the assessments used (there are general articles that help you understand the terminology).

Those are the resources that come to the top of my head. Maybe I should add intuition. You know what your child is capable of. Don’t let people discount that information.

Anyone have any other resources to add?

Early Social Networking Communities for Kids

This tweet  and subsequent twitter conversation made me think about a story of my son and the early days of social networking sites for kids.

This story happened when my son was about 8 or 9, and now he’s  19. His sister, who is 2 and a half years older than him, used to frequent a site named girlz dot com (which is now a porn site!!). She and her cousins (I think, it may have been her step-sisters) would monopolize the computer with the girly website.

Kenny, the only boy relative at the time, hated the girly website. He proclaimed that it was not fair that there was a girlz dot com, and when it was finally his turn to play on the computer, he said loudly that he was going to boyz dot com. Boyz dot com has ALWAYS been a porn site. And the site was a pretty typical 90′s porn site, lots of rapid fire pop-ups with some very graphic stuff.

So Kenny loads up the site, and the girls are all right there, and they all start screaming when the porn site starts spewing its stuff all over the screen. Kenny was in a panic trying to close down windows. I think we turned off the monitor and sent everyone away.

It was actually pretty funny.

A new house rule was born that day: if you have never visited a URL, you must google it first to determine the content of the site.

Google Searches on Asperger’s Syndrome

As the start of school gets closer, there are more and more searches such as “best school in Florida for Asperger’s”. There seems to be a real need for that sort of information.

Well if you are in Tallahassee, and your kid is going to middle school, stay away from RAA whatever you do! That is where the evil principal is.  I would imagine school is still what you make it, and as a parent you’ll have to do alot of educating of school staff.

The other thing I think is needed is some sort of information for parents on how mentor their children to advocate for themselves, and then to let go. How to let your kids fail a little so they will be more prepared for life. It’s hard if you have someone you need to protect from so many things, to think about little your kids fly a little. I never saw guides on how to know when to do it, how to know how much to let them go, etc.

That is a hard thing for a parent to learn in any situation, but when you have been the advocate for so long it’s really hard to know how and when to step back. I’m still learning that lesson.

very busy

Too busy to blog. I’ve been keeping up over at Adventures in Corporate Education, and I never stop twittering anymore.

So what’s up?

• Grad school summer semester’s almost over (I should finishing some of that work right now..)
• Work – finishing a big project (coming to ATL in August), and working on social media as a process on the side
• Kids – Bri is looking for a job, Kenny is just all over the place this summer (in Philly this weekend for a conference)
• Fall Semester – getting myself and Kenny all set for the new semester
• home- well the house is falling to pieces. And I haven’t been able to put anything up, hopefully I will at least get some pickles done before I go to GA.
• Planning to go see Stacey in NYC in Aug
• I think I need to plan a mini-vaca!!

What’s up with y’all?

The state of PA tells Autism Speaks to shut up

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.

Strawberries from my garden!

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Originally uploaded by gminks

Look at all the strawberries! It’s hard to tell from the pick, but that is about 2 quarts. There are tons still on the vines too. Are they called vines?

Anyway- cool!

Has Autism Speaks copywrited the term “Autism Speaks”?

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?

This one is for Boomer….

more cat pictures

School Uniforms, Sensory Integration, and Voting Kids out of Class

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.