Community Outreach/Alternate Programs at Tamalpais District

| September 30, 2013

Owen2As we try to spread awareness and acceptance I find that it is much harder to garner support for adults.  I do not really understand but seems that perhaps people believe when supporting younger kids there is hope for further growth and success but when reach adulthood then support just means some form of hand out or charity. So our mission becomes to educate the community that our young adolescents have much to contribute and that support for them also means further growth and success.

We must also empower our young adolescents to be able to self advocate and be comfortable sharing who they are and perhaps some of their own struggles.   Struggles lead to strength of character and are part of any person so we need to reinforce that it is really okay to experience this.  

the girlsI am not sure this message is really getting out there. Folks are listening but no one is engaging.   We need to reach outside our safe community and engage others who truly would benefit from hiring our adolescents.  I need everyone reading this to think of people that own a company or have the ability to hire on some of these adults. There are agencies out there that will partner with these employers. I am challenging you to think of one person or one company where you have a contact. You and others will feel so empowered to have helped.  I have helped two agencies make contact with 2 law firms who have successfully placed two adults and I cannot express how much value these very special adults are bringing to these employers.

I have been very frustrated by the news and media acknowledging that there are very few services and resources available for adults.  I read an article describing this as an impending community care crisis commenting on the fact that all the kids (1 in 88) diagnosed with autism will someday be adults with autism and  if there are limited resources today this will only worsen.  We must change this.

We must engage our community. We are at the fore front of this huge bubble of kids being diagnosed and we absolutely need to be reaching out to others and make change.

If you are willing to accept my challenge then please contact me as I am trying to put together shared resources on employment options. 

I just got selected to be on an Alternative Programming Advisory Committee at Tamalpais Union High School District.  The purpose of this committee is to develop measurable criteria by which alternative programs could be evaluated.  I have always known that there were a number of alternative programs available but did not understand all the options available to our students.  There is a program through adult education that assist students who may want to get a GED rather than a diploma. This may be for a student who struggles to attend class and may be overwhelmed in a high school setting. I am asking a lot of questions and will share with you all the programs that are available in this district. I will also learn about other programs in other districts as we investigate ways to measure. I will include this in future posts.

 

I think too much about what I am going to write which is why takes me so long to post.  Please let me know any topics that may interest you and I will do my best to access resources and obtain information.

Autistry Newsletter – October 1, 2013

| September 30, 2013

Steven and Dr. Brian Kennedy

Steven and Dr. Brian Kennedy

So much news…where to begin? Let’s start with a party!

Last week we held a very special event at Autistry – The Scientists and Artists Party!

It began as a simple thank you party to Brian Kennedy, CEO of the Buck Institute as several of our Autistry students had internships at the Buck this summer. And we also wanted to thank Ken Pontac, local screenwriter and animation director, for his many visits to Autistry to speak about working in the world of comics, cartoons, and animated features.

Angelique Benicio and Ken Pontac

Angelique Benicio and Ken Pontac

So we combined the two parties into an amazing celebration of creativity. The over 120 guests enjoyed presentations by Janet and Dan about the history of Autistry and their exciting plans for the future, a great introduction to the research being done at the Buck on the impact of aging on disease, and a lively talk and fabulous karaoke performance by Ken.

Salmah Nakuda, Maureen Block, and Jill Robinson with the Red Ryder Racer

Salmah Nakuda, Maureen Block, and Jill Robinson of the Ryder Foundation with the Red Ryder Racer

Several other scientists were in the crowd including Gordon Lithgow (Buck Institute), Robert Hendren (UCSF), Barbara Kalmanson, and Mark Eastham.

Local artists included Angelique Benicio, Archie Held, Rufus Stechman, and Jennifer Fearon.

Jen Hirt of Sugar Pie Bakery created an awesome Scientists and Artists cake – gluten free/dairy free and absolutely delicious.

Autistry student projects were on display and the students themselves were on hand to discuss their work. Several of the students went on stage to sing their favorite Karaoke songs. Dan gave a preview of the racetrack that will be featured at the Autistry Faire.

More photos from the evening can be found on the Autistry Flickr account (and we post lots of photos on our Autistry Facebook Page). It was a wonderful, magical evening and all agreed that we must have more parties.

Video from a test flight over the party with our quadcopter with attached GoPro camera.

Tin Man with Autistry Hearty by William Brent

Tin Man with Autistry Heart by William Brent


A story with heart:
Several months ago William Brent, an artist friend of Ken Pontac’s had heart surgery. Ken asked us to send uplifting, humorous, artistic messages to lighten Bill’s spirit. So Jack drew a mechanical heart with a cheery message. Alex sketched the tin man with a note saying “Just ask the wizard!” And, Amelia and Dan created a heart of gears out of wood on the ShopBot. Bill is recovering well from his surgery and last week he sent us a beautiful painting of himself as the tin man with his Autistry heart! This has been an amazingly creative communication between folks who speak from the heart.

 

AutistryFaireFlyer2013It’s almost Faire time! Autistry students and staff are gearing up for our annual fundraiser – the Autistry Faire: Cardboard Carnival. This year the faire is bigger and better than ever. A 40-foot long racetrack is under construction and we are building custom designed radio-controlled cars to race on it. There will be dancing in the street to live music from Beso Negro and Marble Party. And in keeping with our Car and Cardboard theme a wonderful twist on the haunted house – The Little Auto Shop of Horrors! Courtenay returns to create fabulous facial art and we will have lots of games of skill and chance. There will be great food, wine and beer and a wonderful Autistry Bazaar filled with cool crafts and vintage items for sale. Oh, and belly dancers - Raks Rosa returns! Tickets to the Faire are on sale now.

Also this month: the Oak Hill School “We Are Family” Wellness Day, Sunday, October 13th at the Bay Club in Corte Madera. The Autistry Studios workshop program will be represented and this is an event for the whole family and features:

OHevent_logoAbram Rosenblatt, PhD, UCSF Professor, will preview the UCSF-Oak Hill Autism Outcomes Study.
Barbara Kalmanson, PhD, founding clinical director of Oak Hill School, will discuss teaching skills for independent, healthy living for children and adolescents.
Clifford Saron, PhD, researcher at the Center for Mind and Brain at UC Davis, will address the issue of sensory processing and how neurologically different children experience their world. Dr. Saron will also describe his related research on meditation practice with children on the autism spectrum and their mothers. For more information visit the Oak Hill page.

Giants support Autism, and my experience with GGRC

| September 2, 2013

Will Clark of the SF Giants

Will Clark of the SF Giants

Although I had hoped to write a weekly blog I find that things just seem to always be busy. So looks to be an every other week blog. I did have a great day at a corporate event last week. I found out that Will Clarke’s son was autistic and so when he tossed me the ball at the end of batting practice I yelled out can you sign this ball for my son who has autism. He immediately came over and talked to me for about 10 minutes. Connor now has a personalized ball. Just makes you realize that there are a lot of folks out there supporting autism. Will Clark attends the annual Giants event in support of Autism. I have never attended but think I will next year.
Ian and Connor building the racetrack

Ian and Connor building the racetrack


I also was able to have Connor continue to work at Autistry Studios two days a week and incorporate this as part of his transitional program at IVC.  I was very grateful that the district was flexible about transport and willing to work with me. This also gives a lot of credibility to the employment program at Autistry with Marin County Office of Education. I hope that this allows future partnerships between the schools and Autistry.

GGRC

GGRC

This week I want to write about Golden Gate Regional Center services.  My son’s IPP (Individual Program Plan) was just last week. Although I ended up conducting this over the phone I decided that future meetings will be with Connor and I will fade to the background.  GGRC will be most critical for my son when he is living on his own and he needs to understand the process and that he has another layer of support.

Connor was denied GGRC three times. The first time was when he was 3, then again when he was 8 and then just before his 18th birthday. The last time I did appeal and requested an informal meeting. I had to then be strategic as I prepared for this meeting as I was worried about the financial cost of hiring an attorney if we had to go to a hearing.  I got a new neuropsyche report and I also met with an attorney from Disability Rights of California. This attorney at no cost took me through the Lanterman Act and also met with Connor.  She fully supported that Connor should qualify for GGRC and we made sure that we had the paperwork in order and could address all the reasons why he was entitled to GGRC. 

At the informal meeting the doctor who had actually previously denied Connor services when he was younger did explain his reasoning although truthfully I was not interested in retrospect but moving forward. Needless to say after an hour meeting the group from GGRC only took 10 minutes to agree that Connor was eligible for services.  Some of the reports that I had submitted with my last request did discuss inaccurately some prior employment that Connor had secured. My advice therefore is to be sure that the reports you submit are entirely accurate and to ensure that they address abilities/disability within the Lanterman Act. Also if you believe that your adolescent will likely need support into adulthood push for these services. Find the right neuropsyche who understands the requirements and is willing to participate in informal hearings.

I do not know where an agency like GGRC will be in the next 10 years but right now it is a huge comfort to know that after Connor is finished with MCOE he will be monitored by another agency.