janjt's Blog

Well, a few weeks later, and what a difference...yes, our economy is still in the tank, but I know that I feel a whole lot better about American politics now that Obama has won the election. I do think there is hope again...

Palin, I think, will fall into oblivion, unless the Republican party wants to resurrect her, which would be a mistake. Even her voice grates on me, let alone what she stands for.

I did a crazy thing today, and actually applied for a non-career job for the Obama-Biden Transition Team -- I have no idea if anything will come of it, and I certainly don't have the time, but if there is some small way I can help to get this country back on its feet, I'll do it...

If you are interested in helping out, the website is www.change.gov.

Arigatou, Sakabatou-san!

Cool vids!

Jan,

I'm sorry - what is CBT?

Diane

-diaaneus

Hey Diane -- CBT stands for Cognitive Behavioral Therapy -- it's a psychological theory used to develop interventions -- basically, a form of cognitive retraining -- being aware of what is happening in your body and mind before you 'act out' and retraining to be able to choose a different reaction. It works well with anxiety, depression, OCD, and some disruptive manifestations of ASDs.

Hey Diane -

If the parents at Stanbridge need some ideas, I'd be glad to help. Just getting the kids together is a great thing! An activity, a couple of parents who agree on what to do and not to do, and you're off, really.

The San Jose Asperger's group at Meetup.com does events for the Tweens, but haven't been to any of them yet. You may want to check that out, too!

Thanks for stopping in, Erin! I plan to send out a few blasts this week, so keep checking back...should be lots of info here soon!

Hey folks -

If you haven't already taken my survey on this subject, please do so -- it runs until December 1st, 2008, and is open to anyone touched by ASDs. Thanks!

http://www.surveymonkey.com/s.aspx?sm=3LaSY_2bjlUTajFxzYJCgwqw_3d_3d

Well, I attended this Plenary Session at Stanford, and participated in the conference the following day. Wow. What a powerful program Stanford University has put together here, hosted by the School of Education.

I have agreed to lead Mountain View High School's Challenge Success program in response to this conference, working with the principal and other administrators, teachers, counselors, students, the PTSA and other parents.

This work has great significance for neurodiverse youth -- many whom are caught in the dilemma of staying out of mainstream classes and in SPED because the 'normal' classes are often too distracting and chaotic, and the AP and Honors classes are simply too much to handle. I heard this time and time again at this conference and it is clearly time to do something to change this.

Wishe me luck! :)

Okay, I guess since I have spent so many hours getting this site up and running, I'm entitled to do a little plug for my book, lol!

If you haven't checked it out (and if I do say so myself), it's a great resource for parents who have a child between the ages of 4 and 14 with Asperger's Syndrome or a related difference such as NLD.

You can purchase it at Amazon, and yes, I'm working on the companion book for High School! :)

I love this movie -- so much in fact that I lend it out to families with older Aspies and ask that they watch it together and then come back in and talk about it. We don't take enough time, in my opinion, to consider what ASD is like in adulthood. Our focus has been primarily on early intervention, and while that undoubtedly will help upcoming generations of people with ASD, it has left the adult population wondering 'what about me?'

If you are an NT, and have ever wondered what life is like as an adult with ASD, spend a few hours on www.wrongplanet.net. I think it will open your eyes a bit...it makes me realize just how much work we have to do as practitioners, if nothing else as liaisons between the NT and neurodiverse worlds.

There has been a lot of talk in the community about what interventions work, both for children and adults, in managing the effects of ASDs and AD/HD.

I have referred a few of my clients to a great neurofeeback worker, and they have had good results. Has anyone else had any experience here? What was it?

I have TRIED to refer a few clients to CBT -- but have not found any who really understand ASD, and so it hasn't been a good fit. But, I believe that if I found a good practitioner, this could be a useful tool. Anyone have feedback here? Referrals?

I would love to hear other's input here as to what interventions have worked for others...

Hi folks -

If any of you work with ASD adults, please make sure that they are aware that AASCEND is hosting an all-day job fair at San Francisco State on Oct. 25. You can get more details at: www.aascend.net.

See you there!

I have to admit that I'm a bit out of touch with today's IEPs -- my son has been on a 504 since junior high, and so I haven't had to deal with what was (for us) a draconian process. And so I wonder -- have IEPs and how they are executed changed over the last few years?

As a point of reference -- when I first met with our IEP team in 1996, the director of special ed sat across a conference table -- with 7 other school officials -- and explained to me, calmly, that Asperger's Syndrome was simply "the diagnosis du jour" and that IEPs were for "children in wheelchairs". Thus began my struggle with the public school system, their efforts to minimize the issues my son faced, their refusal (illegal as it was) to evaluate him for OT, and their attempt on two different occasions to DQ (disqualify) him and remove him from an IEP.

Please tell me things have changed!

Well, it's that time of year again...time to talk politics. Most of you who know me also know my politically left leanings, but it's not every election that we have someone with direct experience with disability running for office.

And indeed, Governor Palin has briefly mentioned this as part of her platform -- that she now 'knows what it's like' and will fight the good fight on behalf of all of us moms around the country.

Without getting into political rhetoric over her previous record with regards to disability funding, I will ask if Sarah Palin can ever know disability as many of us have known it.

For one, she has resources that most of us do not have:
- She has money. While not the only thing families need to help their children, having enough cash to secure good services is a blessing most of us do not have. We make decisions about whether to send one child to an enrichment camp or whether to go on a family vacation, because we cannot do both. I doubt that the Palin's will have this problem.

- She has connections. Really, can you imagine a Special Ed director denying services to her daughter? No. Nuff said.

- She has an extended family nearby. Some of us are lucky enough to have family who can help out, but many of us scramble to find respite care. Others of us simply put our lives on hold while we raise our children -- because, unlike what Ms. Palin states -- we really cannot have it all. At least, not all at once.

Another issue which has been brought up in other forums is the fact that she really does not know -- YET -- what it is like to raise a child with a disability. When she made this statement, her Down Syndrome son was four months old. To parents of older children, her comments were both insulting and humiliating. She doesn't know yet -- she doesn't understand the struggles at a visceral level.

That, indeed, will come later.

If she and McCain win, will it make a difference? It's difficult to tell at this point. I do know that in ten years from now, she will have a vastly different concept of what it is to raise one of these special children. And I wish her all my patience, love, and support, even if I'm not voting for her.

If you haven't heard about Marshall University's program for high-functioning ASD college-bound students (and even if you have), keep reading!

I spoke with Marc Ellison recently, who is the Director of the West Virginia Autism Training Center. Located at Marshall University in Huntington, West Virginia, the program is a 'natural offshoot' of Marshall's HELP program (a program started in 1981 for LD and AD/HD students).

ATC's program is straight-forward. Based on intake interviews with the student and his/her family, a program is developed that best meets his/her needs -- including social functioning, executive functioning, academic work, and so on. Long-term and short-term goals are put into place, and then the ATC team works the program with the student.

Depending on his/her needs, this may mean a quick checkin meeting once or twice a day, or this may mean ongoing meetings and instruction throughout the day -- each plan is highly individualized for that student's needs. Areas of instruction include academic, social, and independent living skills. The ATC team puts an emphasis on relationship building among its members -- now numbering 20 students.

There are no age restrictions to applying for ATC, and current students range from right of out high school to those returning to school a bit later, and accepts transfer students from other colleges and universities.

One of the greatest things about Marshall's program is that the professors are (for the most part) actively engaged with accommodations, which is a nice contrast from many universities which claim to welcome neurodiverse students, only to force these students to deal with uncaring or downright hostile professors. This is in large part due to the fact that the HELP program has been around for so long -- professors at Marshall have long been working with LD and AD/HD students, and so working with ASD students is a natural extension.

Each professor is given a one-page information sheet at the beginning of each term with information about an ASD student's preferred learning style and specific issues s/he might face. Additionally, the ATC staff meets with each professor once a week to go over how the ASD student is doing in class. This direct communication and feedback loop with the professors is an excellent way to keep kids from falling through the cracks midway through the term, and indeed is an excellent model for other schools to use.

Although ATC does have a manned hotline for students 24/7, the program is not a residential program, and therefore students must be fairly high-functioning and be able to navigate dorm life.

Overall, I was quite impressed with what I learned from Marc. He'll be sending me some materials that I'm happy to share, or you can contact the ATC directly at:

http://www.marshall.edu/coe/atc/modelcollege.htm

This month's American Psychologist (September 2008) had an excellent article by John Mayer, Peter Salovay, and David Caruso on Emotional Intelligence -- not the EI that has been subverted by pop psychology, but the real deal -- quantifying and qualifying social intelligence as an ACTUAL intelligence, not personality traits such as gregariousness, or emotional states such as happiness, self-esteem, and so forth.

The article is in part a response to the confusion in the field caused by the popular (but misguided) book "Emotional Intelligence: Why It Can Matter More than IQ", by Daniel Goleman. Goleman (and others who followed him) muddied the clinical waters by skewing the original research done by Mayer, Salovay, and Caruso in the 90s. The original work posits that emotional intelligence -- the ability to correctly read and respond to social cues -- is in fact a type of cognitive intelligence -- NOT just some fuzzy, nice-to-have adaptive behaviors.

The conceptualization of social relatedness as a true component of intelligence is key -- it helps enormously to clearly define what is a disability, which in turn will help those with ASD conditions to secure appropriate services.

Mayer et al make a very good case for the fact that social relatedness (or the lack thereof) is a TRAIT -- that is, a relatively unmutable part of who we are, probably in large part defined genetically, much as hair and eye color.

What Goleman et al have done with their work (interesting as it may be) is confuse these TRAITS with STATES -- states being transient emotional responses to environment -- happiness, feelings of self-esteem, being magnanimous, etc. The danger here is that we can't build a case for disability based on a client's being unhappy. We CAN build a case for disability based on a deficit in social cognition, when severe enough.

Further, focusing on social issues as traits rather than states brings into sharper focus the work we need to do -- continue to socialize the idea that social relatedness is not a choice that can be overcome by cajoling our clients/students, or forcing them to be something they are not -- it is, biochemically -- who they are, and they deserve our respect and kindness as they are.

Stanford will host its annual SOS Plenary Session, open to all secondary and post-secondary parents and educators in the Bay Area. Visit http://www.stanford.edu/dept/SUSE/sosconference/ for more information and to RSVP.

Career Opportunities for Students with Disabilities hosts its annual conference in the San Francisco area this year, in Burlingame on October 27 and 28. Visit http://www.cosdonline.org/conferences/index.shtml for more information.

The Morgan Center is hosting their annual conference in San Jose, CA September 26 and 27. Visit http://www.morgancenter.org/conference.html for details.

Please come join us at EvoLibri Consulting for our monthly series on topics relating to transitioning teens to college and beyond! All info nights are held at EvoLibri Consulting, 719 Colorado Ave., in Palo Alto and start at 7:00 pm. Cost is $15 per person, or $25 per couple. Pre-registration by using the contact form at www.evolibri.com/contact.

October 7, 2008 -- Transitioning Teens to Independence

November 4, 2008 -- Counseling Alternatives for ND Youth

December 2, 2008 -- The Case for Case Management

February 2, 2009 -- Post-Secondary Educational Choices for Neurodiverse Teens

March 3, 2009 -- Selecting a Field of Study for College-Bound Neurodiverse Teens

April 7, 2009 -- Volunteering, Informational Interviewing, and Networking for Neurodiverse Teens

May 5, 2009 -- Career Assessment for Neurodiverse Teens

June 2, 2009 -- College Selection for Neurodiverse Teens

Come join us for pizza, games, and an occasional outing -- once a month in Palo Alto! For more information and to sign up for upcoming Club Neuro events, please visit http://aspergers.meetup.com/390/.

Hope to see you there!!