Janet Miller | September 30, 2013

As 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.  

I 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.

Category: Commentary, Transitions | Comments Off on Community Outreach/Alternate Programs at Tamalpais District
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Janet Miller | September 2, 2013

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.

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.

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 18^th 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.

 

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Janet Miller | August 18, 2013

As I continue this blog I am going to refer to our kids as adolescents. As my son continues to remind me: they clearly are not kids anymore.

Several people have recently contacted me to talk about the lack of job training skills that our adolescents may be receiving as right now their full time job may just be to attend school. Also, not many schools integrate internships into the curriculum or as part of the IEP. Truthfully though this should really be part of any transition IEP.  We need to create opportunities for our adolescents and we should find a way to get the schools to incorporate this into any IEP.  You, however, must take initiative to discover these opportunities.  An internship may be more appropriate than homework.  A parent recently shared with me that the homework she has for her daughter is specific to life skills. This will ensure that there is continuity with these skills at home and provide better generalization. These skills may be cooking a meal or preparing lunch.  If you have an adolescent who is strong academically but lacks basic hygiene or other skills that will allow them to be independent and also keep a job then you may want to consider how to balance this.

Consider transportation needs if your adolescent will not drive. Our son took the bus on his own last week and walked to his job. We had to be very strategic as for the past year as he has been very resistant to doing this on his own. He practiced many times and we are having someone shadow him. He had to be the one to tell us he was ready which I believe to all be part of his own growth. As I often share with others we just cannot get caught up with the time it may take to gain a particular skill as many of our adolescents can take a long time to get there but when they get there they generally retain what they learned. We also worry about how others will react to him in public when he starts talking to himself or pacing or even just looking up all the time. He is very comfortable sharing with others that he has autism and we have talked to him about what he would do if someone reacted to his behavior. He has some responses but most importantly he has a cell phone so he can call us or anyone else that he knows can help him. Some day he will be on his own and we have to face these issues now so he knows how to manage them. Very overwhelming as a parent. I am most motivated by the fact that I want his younger brother to have his own life and choices as he will likely be C guardian some day when we are no longer here. If C is able to live independently and work with support of GGRC this will not fall on my younger son.

We have identified 3 skills that we want my son to gain over the next 6-12 months. We are not specifically including this in his IEP as we are focused on helping him gain this outside of his transition program. We are just not sure that they have the resources for this and we are making this choice. He does get a lot out of his transition program but not necessarily all that we believe he will need to get to the point of living and working on his own. This is why he is also involved with Autistry.  We do have to make tough choices about finances as we do have a younger son who will be going to college in a couple years.

Next week I will talk about GGRC. Summer is just about over and here we go into another school year.

Category: Transitions | Comments Off on High School Support/Life Skills
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Janet Miller | July 21, 2013

Everything I write about is my opinion and based on lots of interaction with other parents/specialists.  I have been very active in this community and wanted to share with others what I have learned as many parents have reached out to me for advice. Again you need to thoughtfully consider what I outline as you know your son/daughter.  I am strongly urging you to start your own transition and consider this as you read what I write. Transition is as much for the parent as for the your adolescent.

I wanted to respond to a few questions I received following my last blog. Districts can put pressure on families sometimes to select a track:  diploma or services.  I have a friend who was asked to make this decision in middle school.  Sometimes you know but many times there is still so much growth going on that you want to be sure you do not box your child so that there are not options when you get to high school. If the student can handle the academics then you should work towards a diploma at least the first year of high school as will be an indication of what they can handle.  You can clearly also word this in an IEP under comments.  If you are considering a diploma you should also transition your son/ daughter to some type of regular high school if you really are preparing them for college or even independent employment. This is more real world and will force them to integrate into situations that will prepare them post high school.  This may not always be the case but something you should seriously evaluate. This all goes to what you are considering post high school.  This may not be until the junior year when you have a better sense of what type of learning and social environment they can tolerate.  If they still need a lot of support in later high school years then services may be more appropriate.

This leads me to the topic I want to talk about today.  As parents we want to protect and shield our kids from disappointment. Truthfully though we all face disappointment and so better to expose our kids to this when we can be around to help them navigate and also just appreciate that all part of life.  This is particularly true as we want to transition them to more independence.   We have to let them do things that we may not know whether they can manage but know that a critical skill that may be needed for independence.   We can also be strategic with how we introduce them to new skills and situations. More often than not we do not want to do this as we do not want them to fail. Failure is only negative if there is no learning going on and if there is no understanding of how to move forward. What I am speaking to is true for all kids not just those with special needs. As parents though we just tend to shield and protect our kids with special needs more.

My son wants to do more on his own. He is doing things and not always successfully.  He now phones in his medication refill to the pharmacy. The first couple times we did together.  He then did on his own and pressed the wrong numbers. He got frustrated but he also learned that not a big deal and is now doing correctly. When attempting to take a bus to Autistry he was tasked with figuring out the schedule and route. He got confused and did not understand that there was a to and from route. He showed up at the wrong time and again got a little frustrated but worked through this and the next day got the right location and departure time.  He also learned a lot about bus schedules. These may not seem significant risks but they were situations he needed to manage on his own and was not successful at first. When my son worked for me several summers ago I gained a lot of insight.  His first day of work I had a meeting. I was worried as he was on his own but created very structured schedule and told him to ask my assistant if he had any questions.  I did not want to go to my meeting as my son had never been left alone in a work situation. My meeting ended up being 2 hours long and when I got back to his desk he had not only completed the work I had given him but had sought out my assistant when he needed help, identified a few problems that had never been brought to my attention and even had limited his break to 15 minutes on the computer accessing the internet.  He was successful but it took everything in me to walk away and go to my meeting.

As we move our kids toward employment there will be skills that will be a challenge and we need to be sure that if they are not always successful initially at a task that they are able to manage their frustrations and approach in a different way.

C and I are through 3 weeks of the employment program at Autistry.  They had to understand how to complete a W9, importance of personal identification for employment. They both need to complete timecards to record hours and then deposit their paycheck into checking account. Both C& I are learning team work and together successfully built a trailer which will be needed to transport wood for a shed that they are just starting to put together.  They are focused and respectful to each other and Dan. They are learning how to take direction and constructive feedback from their boss Dan. These are skills many young college graduates struggle with, taking direction and being open to feedback for improvement.

 

Category: Transitions | 1 Comment »
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Janet Miller | July 10, 2013

I appreciate the feedback from my first blog. I really hope that others will post comments so that this can be interactive. Please share your experiences as we can all learn from each other. Ask questions too. This is probably the most difficult transition as there are a lot of decisions and choices but resources and options can be more limited. There continues to be a lot of focus on early intervention and while I have read a lot of articles about the need for services and support as our kids’ transition out of high school, I have not found many practical options.  Janet and Dan are truly visionary and in my experience parents are the ones that have to create the opportunities.

I did touch briefly on the topic of diploma vs. certificate of completion and services. A diploma just terminates the school district’s responsibility but there are many students who get a diploma and then can access Golden Gate Regional Center Services if they have qualified or perhaps another agency depending on diagnosis.  I believe the most important factor in this decision is really about goals and expectations post high school.  The transition IEP and planning should really start at age 16 if not sooner. Very important that you have an awareness of not just cognitive functioning but level of independence. I really encourage you to also seek out employment opportunities or non paid internships while your adolescent is in high school so you can evaluate level of independence and what type of support if any will be needed.   Determine your son/daughter’s interest and seek out an opportunity. I found an internship for my son at a local record/CD store as he knows a lot about music. The owner was a friend of a friend and at first was not sure but now 2 years later really appreciates our son.  C also worked for my company which although was not optimal was a great way for me to assess his skills and determine structure for him to be successful.  C worked very hard and was a lot more independent then I thought he would be and got along with everyone.  My staff asked for him to come back the next summer. I chose instead to have him participate in Autistry Employment Program which is much better for C to gain his own independence.  He and Ian have completed building a trailer and are now working on a shed commissioned by a customer.  I will share more in my next blog on the critical employment skills being developed there.

The most important take away for you when evaluating a diploma is really just to be sure you have an appropriate plan after high school.  If they are no longer eligible for services after high school can they attend a community college or any university on their own? Or can you afford to privately pay for some of the programs that are out there to help our kids’ transition? Golden Gate Regional Services will assist with some of these programs if the school district is no longer providing services.

I have talked to too many parents who are not looking beyond graduation from high school as working so hard to help son/daughter earn the diploma.  I am really encouraging you to have a balanced look at your son/daughter’s overall skill and what will be needed post high school to continue to develop and be successful.   A diploma is great and a worthy goal if it makes sense for the student.  Be sure you are working with your school district on an appropriate transition IEP. You need to be strategic with your future planning.

 

Category: Transitions | 3 Comments »
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Janet Miller | June 30, 2013

I am asked frequently about my choices and decisions about my son ( referred to as C in this blog) who is now approaching 20.  I do not want this blog to be about him but more about what I have learned that might help others as they start to think about post high school options.  I will speak about C  in this first blog but will then transition to just general topics on transition.

Another goal of this blog is to follow C’s development and growth as a participant in Autistry Model Employment Program. Focus will not so much be on C but more specific to the goals of the program and the important skills that are developed.

I always believed that a diploma was the most important goal for him. He was on that track until at 17 I realized that he would be better served with school services until he reaches 21. I truly believed that a diploma would give him more credibility and recognition and provide more options. In reality C will always need support.  A diploma would not give him access to what he really would need to become independent. While we can get focused on cognitive abilities there are many things to truly consider when evaluating options post high school. Pushing further academics was also creating a lot of anxiety which interfered with overall growth for C.  There is a lot to  consider as well with services such as supplemental social security, golden gate regional center and how to ensure that our kids get the right support to move toward independence

Although C is 20 I am not so focused on his chronological age as he is still developing and may reach milestones at different times. Our goal is to work toward employment and Independent living. He changes every year and I have always tried to emphasize this to other families when considering options for their own kids.  Unfortunately we are forced to make many decisions when they reach 18 because that is the legal age that they are considered adults.

Conservatorship, partial conservatorship are definitely things to start considering long before our kids turn 18.  C is very self aware of what he can and cannot do and knows that he needs assistance.  You need to determine whether or not your son or daughter’s decision making at 18 is safe and whether they will involve you or be susceptible to others. I can offer more on this topic at a later date.

Transitions are as much about the family as about the child. As parents we need to work on fostering independence.  This does mean taking safe risks . For C this is allowing him to walk home from local venues, riding the bus  and purchasing items at a store on his own.  He is also letting us know that he “knows what he is doing” and we are working on listening and allowing him to make these decisions. For so long he did what we all asked him to do as we structured his day and had him learn what we knew was important for him. Now we are allowing him to tell us more about who he wants to be  which means not always wanting to please us or others when given a choice.

So this is my first entry on this blog.  I will post weekly and each blog will cover a different topic.

Autistry Model Employment Program has started and is going really well.  The 2 employees are really understanding collaboration and how important it is to work as a team.

Category: Commentary, Jobs & Employment, Transitions | 1 Comment »
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Dan Swearingen | February 17, 2013

You read that right. Chitty Chitty Bang Bang.

Here’s why Chitty Chitty Bang Bang (hereafter CCBB) is the first Bond film.

1. Ian Fleming, author of the James Bond books, wrote the book “Chitty-Chitty-Bang-Bang: The Magical Car” published in 1964.

2. The film CCBB was produced by Albert R. Broccoli, one of the producers of all the Bond films.

3. As in most Bond films, in CCBB the first love interest of the main character dies. Caractacus Pott’s wife dies previous to this story.

4. In Bond films the woman of the hour has a suggestive name. In CCBB Caractacus Pott’s female counterpart is Truly Scrumptious.

5. James Bond and Caractacus Pott both held the rank of Commander in the Royal Navy.

6. Bond movies often feature a car with gadgets and special features. CCBB: the car has a few tricks.

7. Bond films usually have a megalomaniac villain. In CCBB we have Baron Bomburst played by actor Gert Fröbe who previously appeared in the Bond movie Goldfinger as the titular villain Auric Goldfinger.

8. In Bond movies the above mentioned villain usually has an awesome lair with huge interior space.  In CCBB we have Baron Bomburst’s castle set in the closest thing in existence to a Disney Princess castle – Neuschwanstein Castle.

having got this bit of movie trivia off my chest I leave you with the main song of the movie (Bond movies always have catchy title songs!)

 

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Janet Lawson, MFT | August 19, 2012

Autistry Studios is featured in this week’s edition of the Pacific Sun (Aug. 17, 2012). Jordan Rosenfeld writes about the effect of changes to the DSM (Diagnostic and Statistical Manual of Mental Disorders) that will place Asperger’s into the more general category of Autism Spectrum Disorder. No one is certain exactly how this new categorization will impact funding. Currently most regional centers do not financially support individuals with Asperger’s.

All the more reason for us to concentrate on creating employment opportunities for teens and adults with ASD!

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Dan Swearingen | January 2, 2012

Many years ago Jeff Atwood (Coding Horror) graciously invited me to share in his Five Things You Didn’t Know About [Jeff Atwood] (and [his] office) post. I’m reposting it on this blog since Autistry is very much my life now.

I too have been humbled and impressed by the other people’s stories in the Five Things meme so here are mine:

1. I am baffled by other people’s fascination with professional sports.

I can identify with playing a sport – I just cannot understand the motivation behind the activity and entire economies driven by watching, talking, and writing about sports. That a city cares whether or not it has a football team and whether they have a nice stadium when at the same time its schools suck makes no sense to me. That a soccer fan needs to throw a beer bottle at someone who does not like their team makes no sense to me.

2. My family set me up to meet a girl they thought I’d like – and it worked.

I met my wife Janet at a family Thanksgiving dinner after months of my family telling me “oh, we want you to meet this girl we think you’ll like.” We’ve been together since that day in 1987.

3. I am an Astrophysicist by education.

My career in software was a profitable side-effect. In school I was interested in everything and focusing on one thing to get a degree was a challenge. Science seemed to be a recurring interest and my employer at the time (Hewlett-Packard) would pay tuition in that area so I chose to major in physics. After my BS I changed schools to work on a Masters. I was at Cal. State Northridge and they had a world class solar observatory and the astronomers were nice to work with so my M.S. in Physics was based on research into the solar magnetic field structure’s relationship with gas brightness and velocity. For my Ph.D. I wanted to work on something other than solar astronomy so amongst the multitude of choices I had (I think it was two) I joined the astronomy department at Indiana University, Bloomington. I was there five and a half years and finished my coursework, my Physics and Astronomy Ph.D. qualifying exams, and made good progress on my dissertation research. However, family and financial pressures precluded my staying the extra one or two years it would have taken to complete my Ph.D so I left IU with a “thank you for playing” Masters in Astronomy. In the mean time I had picked up good programming skills that people were very interested in paying me for.

4. I am an artist by inclination.

My family is populated mainly by performing artists and musicians. Throughout my life I have built things with my hands and the design and construction of structures of fantasy remains my hobby. I’ve focused on model railroading but I also draw and build other 3D art forms. The artist in me determines whether I’m interested in a project: if there’s room for creativity I’m interested. If you just need me to turn the crank, I’d rather be digging ditches.

5. I’m a recovering Aspie (link)

This might be something you already know. In which case my not realizing you know is a demonstration that I have Asperger’s Syndrome. That’s an Aspie joke.

I was not diagnosed until I was in my 30s. I had always known I had to work especially hard at things that appear easy to people around me and all my life I have been known as “really smart – but weird.” It has been really helpful to have a diagnosis. It hasn’t changed anything I do but it has helped me feel vastly better about the coping mechanisms I employ. I still have most of the traditional problems Asperger’s deal with. Let’s face it, most good software developers are what we call “on the spectrum” so I’ve always fit in really well in good development organizations. However, unenlightened employers almost invariably feel I’m stubborn and arrogant when I’m actually very shy and I strive very hard to be a nice person. As far as being stubborn, I like to think I mitigate it by usually being right (although I now know it usually doesn’t matter that you’re right, I’m still naïve enough to be surprised). Fortunately, I’ve had enough really good employment experiences over the years to be comfortable with what part is me and what part is them.

In my fourth grade class we had a two day workshop put on by representatives from NASA. The Space Race was big in American life at that point. The activity was a simulated mission to Mars with the class divided into mission control and crews of two ships traveling together. On the morning of the first day we were informed that one of the ships had crashed on the surface of Mars and was unable to make the return flight. I was in charge of life support on one of the ships. In a few minutes I provided a solution with charts and resource burn-down graphs. By doing that I effectively ruined the next day and a half of the activity for the whole class.

Soon, after days of tests and interviews I spent less and less time in my regular class and starting in 5th grade was moved to a special class with a only six students (2 each in 4th, 5th, and 6th grades) and told I could study whatever I wanted. I studied the history of transportation, astronomy, puppet theater, building geometric shapes out of manila folders, whatever my interests wandered to. As a class we regularly left school and took a bus downtown to get books out of the San Francisco main branch library as needed since we exhausted the resources of the school library after a couple weeks.

For the next three years I was in the San Francisco schools I never sat in a regular classroom and had the most fun I ever had in school (until graduate school). Every now and then someone would stop by with a textbook and say something like “Dan, you really need to learn some math. Work these chapters, please?” A few days later I’d hand in the work and could go back to following my interests.

When I was middle-school age I moved away from San Francisco. High school and college were much harder. Many teachers mistook my shyness (silence) and inability to flow with the program as stupidity. They would put me in remedial reading one week and only to return me to “A track” (college prep) the next after demonstrating reading over 1200 words per minute (as high as their machine could go). I graduated high school with a D-plus GPA but nearly maxed out my SATs. Only in graduate school and when working on a Ph.D. in astrophysics was I having fun in school again.

I’m a former United States Marine. That probably should make six things you didn’t know about me. I put it here in the Asperger’s portion because many of my most effective coping mechanisms were learned during training in the Corps and I’ll always be grateful for that. I also learned how to get shoes REALLY shiny.

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Janet Lawson, MFT | December 11, 2011

Help us meet the $10,000 challenge from the Miranda Lux Foundation. This is a great time to support Autistry Studios – your donation will count twice! And it will help us continue to provide unique programs for our teens and adults with ASD and other learning challenges.

Donations can be made online on our Donate page or sent to our office at:

Autistry Studios
137 Granada Drive
Corte Madera, CA 94925

Donations are tax deductible to the extent your tax situation allows.

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