Autism History.. the notes

My Notes from the Conference (Unedited Version) I took for Families who couldn't afford to attend because of finances, transportation, or work...

(AILB Stars is my Facebook Page rating system: Autism in Long Beach  5 Stars being the best)

8am-8:45 Registration and Breakfast

I drank lots and lots of Coffee!! They really did a great job on food and drinks!



8:45 Speaker:

Stephen Shore, Ed.D

Stephen Shore is an amazing man and speaker. He is an Adult on the Spectrum, an Educator, and an Author. He gives Music lessons to Kids on the Spectrum. He Co-wrote Understanding Autism for Dummies with Linda Rastelli and Temple Grandin wrote the forward. He's written Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome and Ask and Tell: Self-Advocacy and Disclosure for People on the Autism Spectrum both with a forward by Temple Grandin. He just released a DVD with Daniel Gottlieb, Ph.D., Robert Naseef, Ph.D. called Living Along the Autism Spectrum - What Does It Mean to Have Autism or Asperger Syndrome? He was non-verbal until age Four.



His Lecture was about Self Advocacy. Finding your Ability within the Disability. He stated he was Interdependent not Independent. Interdependent Living includes maintaing Residency, Employment, Relationships (including sexual), continuing Education, and Interacting with your Community.



He asked the Audience... what is the first thing the Doctor tells you after your child’s diagnosis? He answered his own question by saying: the first thing the Doctors tell you is what your kid WONT do. He further states that is exactly the point where Self Advocacy teaching should begin. He said you should start transitioning your child at preschool age. He states Self-advocacy involves knowing when and how to approach others in order to negotiate desired goals, and in order to build better mutual understanding fulfillment and productivity. He speaks about making our children aware of their Sensory Issues and how to deal with them properly. He said when he walks into a room he does a Sensory Scan. He looks at the lighting.. does the position or type of lighting affect him? He said he had a problem with the "down" type lighting. The kind that looks like an upside down coffee cup that floods the light on you. He stated most people with Sensory Issues do. He states these kind of issues will involve a certain amount of Disclosure. We can teach our children early about Disclosure. When, where, and just how much do they need to tell people about their Diagnosis. For example, with the lighting issue you can go to the person running class or in charge and disclose only what is necessary for you to get through that situation. You should explain your needs. Such as can you change the lighting, I have sensitive eyes. Asking for a change in lighting=Advocacy and explaining you have sensitive Eyes=Disclosure. Scanning your environment is very important step in Sensory Self Advocacy.



He spoke more about Sensory. He stated that, for him, Shaving felt like a Power sander across his Skin. He stated a good way to prepare yourself for Interdependent Living is to know your own Sensory Preferences. What types of sounds, tastes, smells, touches, and things do you like that will make your life Easier? What will make it Harder?



He spoke a great deal about Disclosure. Successful self-advocacy often involves an amount of disclosure about oneself that carries some degree of risk, in order to reach a subsequent goal of better mutual understanding.



Handout


Steps to Disclosure


1. Make others aware of your strengths and challenges through verbal, pictorial, and other communication


2. "Rack up" strengths and challenges


3.Non-judgmentally compare characteristic with others and potential role models.


4. Present the label summarizing a condition rather then a name for a set of deficits.


5. Making ones needs known in a way that others can understand and provide support.






There are Six Six Stages To Self Advocacy


1. Planning and Modeling


After involvement with the planning for their own self-advocacy, the person observes the partner engage in the act of advocating.


2. Facilitation and Confidence Building.


Facilitator serves as a guide for the self-advocacy process and remains ready to step in as needed.


3. Partnering and Letter Writing.


equal sharing of advocacy responsibilities. Advocate takes the lead as facilitator offers strong guidance, moral support while the person does most of the advocating. Letter Writing.


4.Moral Support


Partner continues to assist with the preparation. The advocate does most of the talking with the partner nearby to assist if needed.


5. Taking the Lead


The advocate leads the entire process with assistance from the facilitator but only under the self-advocate's direction.


6. Independent Self-Advocacy


The advocate undertakes all preparation, presentation, and evaluation in a completely independent matter




He spoke about keeping a Goal Chart for our kids. Also encouraging them to continue to become Interdependent. Listing Current Goals and Goals for the Future.



He stated it was very important for us to validate our Children, even when the Behavior isn't good. I cant read my writing so I am going on memory here.... If your child hurts another child ask them what happens. When they say so and so made fun of me you validate first... I would be upset if someone made fun of me..... Then help the child find a better way of dealing with the situation.



He spoke about teaching our kids and adults proper Social Behavior. Such as when Men are in the Bathroom what to do and don't do. Do: Look straight ahead, use urinal furthest from persons using urinal, and don't look at people in the eye or look down Audience Giggled. He stated Appropriate Social Behavior must be taught, it will not come any other way



Stephen Shore was really funny. He had a great dry sense of humor that I enjoyed. He stated after the Lecture all his books were free he only charged for the Signature. That made me laugh.



Pros: Brilliant, Funny, Loveable, Interesting, Amazing

Cons: The handouts were a bit confusing to me. I wasn’t sure if I was suppose to copy the steps and charts to use later or if it was just an example



All in all i give him..

5 AILB Stars! *****



BREAK



10ish: Presentation of The Baron Inspiration Award

Actress and Activist Julia Ormond was chosen to prestent Eustacia Cutler with this award. Julia Ormond played Eustacia Cutler in the HBO Movie Temple Grandin.

I am going to tell this part of the Conference in my own words as I witnessed the Event. First row from Steps away....



I signed in and registered at the door and kept one eye peeled to an open table at the front, I wanted that seat front and center. I quickly signed and navigated to the front and slid in my seat. I kept my eyes peeled on the doors hoping to catch a glimpse of Eustacia Cutler walking in. I wanted to see her mannerisms and feel out her vibes. I was praying she was everything I imagined her to be and not just some holier than though Lecturer. I wanted to hear her speak to us and not to the press... I wasn’t let down! But I didn't see her. In my excitement to see Ms. Cutler I forgot all about Julia Ormond. The cool thing is after hearing Ms. Ormond speak, she would have wanted it that way. So I see this lady across the way in a black suit holding a totally out of place bag. Me being the observer I am was wondering why the heck was this elegant woman holding a multi-colored purple bag that looks like it belonged on Haight Street in San Francisco. I mean sure I loved the bag but then again I am a little fashion challenged. So next to her is this young good looking guy. About my height (5'8") and clean as a whistle. You know those guys that just look like they jumped out of GQ magazine. I couldn't get this couple out of my mind. It was all so mismatched. Then I saw her! Eustacia Cutler seems to just appear. She was leaning casually against the wall and I forgot all about the elegant lady, the funky bag, and the GQ guy.






Someone announces Julia Ormand to give the Baron Award and sure enough the Elegant Lady comes to the microphone to give her speech and she has the funky bag....






The media has it word for word but this is what stuck out to me...






She states... Eustacia Cutler wanted to be an actress but made sacrifices for her Child... she says a few other things about what a great sacrifices parents make and so on, and she says on that day we lost a great Actress.. Then Elaine yelled out And we Gained Temple Grandin (I so wanted to run over and high five them both, and it took every fiber of my being not to)... and then...... she unzips the funky Haight Street Bag.... and pulls out her EMMY!!! She gives it to Eustacia and the crowd roars, standing ovation for what seemed like hours, and not a dry eye in the house!!!... And I was steps away.. Front row.





***** 5AILB STARS, 2 HIGH FIVES, AND A LIFETIME OF MEMORIES


Following the Historical Emmy Moment...
Eustacia Cutler
Speaker

Eustacia Cutler is a Harvard Graduate and a Mother to Four Children. One of the children is Temple Grandin. Eustacia Cutler wrote A Thorn in my Pocket where she speaks of Raising Temple over 50 years ago in a conservative world. Ms. Cutler is an Advocate and Travels to speak about her experience. She has also done Webinars and Video Conferences. She has been a band singer at the Pierre Hotel, New York City, performed and written for theater and cabaret, and written documentaries on disabilities for major television networks.



Her Lecture... phenomenal. My notes won’t be long. I was so captivated and one point I stopped writing all together. Sorry AILB Family if you were there you would understand. So my notes will be short and choppy.



Her Doctor was Dr. Bettleheim....

this is his bio....

he created the term "Refrigerator Mom's"..

he gave Ms. Cutler a rough time....

Bruno Bettelheim

Unfortunately, understandings of autism took a turn for the worse under the leadership of Bruno Bettelheim. Dr. Bettelheim an Austrian-born art historian eventually became the director of the Orthogenic School, a home for disturbed children associated with the University of Chicago. Richard Pollack’s 1997 biography of Bettelheim, The Creation of Dr. B, seriously calls into question Bettelheim’s credibility. It was Bettelheim’s theory that children became autistic because of cold and emotionally distant mothers, women he referred to as “refrigerator mothers”. Rather than seeing autism as the neurological condition it is, Bettelheim blamed emotionally distant mothers as the cause of autism, a stigma that hasn’t totally disappeared. We have heard many parents blame themselves for doing or not doing something at some critical stage in their own child’s development. Fortunately, the effect of Bettelheim’s parent blaming encountered a serious setback beginning in the mid 1960’s. ~Best Behavior Consulting



Temple didn't talk until she was 3 1/2

Temple Grandins father contributed to her Autism by taking it personally. Bettelheim encouraged Mr. Grandin's behavior with his remarks about Ms. Cutler being a "Refrigerator Mom". Ms. Cutler found another doctor. I am sorry I can't read my writing and tell you his name. He was a great Doctor though, and even went on to say he would testify for her "sanity" in the divorce proceedings.



Ms. Cutler stated Men take Autism harder than women.



Intrigued, I stopped note taking, I will try to remember not to do that in the future.



Q & A was opened....



Question:

(my question): Today we as mothers are being confused with all the infighting within the Autism Community. What do you think about the Infighting within our Community?

Eustacia Cutler: Good Luck!!! In New York we are still trying to deal with Traffic Light Issues!

Audience Laughs... Ms. Cutler was very funny with a great sense of humor.



Question:

(Audience Member): What about you’re other Children

Eustacia Cutler: That is one area I wish I could "do over". She stated she wished she "did better by them". She stated she wished she could have given more attention to the other Siblings. By not doing so she left them open to be manipulated by others. She stated her best advice was that all mothers dealing with Special Needs Children pursue Counseling for the Siblings.



Ms. Cutler stated Temple had some strange behavior and would even look comatose at times. She had the doctor test her for Epilepsy to see if she was having Mini-Mal's.



Pro: I still have Goosebumps

Con: It would have been awesome to have her go to another area with the moms in the audience instead of sitting at the end during the final Q&A



***** 5 AILB Stars



12ish: Lunch

So good! Thank you Vista Del Mar. And I am sorry to the caterer that looked like she was going to cry when she dropped a tray of sandwiches… you still rocked it.



12:30 Children’s Performance

The Vista Inspire Program Miracle Theater Kids Performed

They sang several songs.. my favorite was One Planet. The hook was "Listen up Wake up We are one World". So amazing. These Teens really enjoyed performing. Wyatt (one of the stars from Autism: The Musical) was jumping up and down and giving it his all! I also enjoyed the song with the lyrics "I'm a Miracle, Your a Miracle, We are all Miracles!".



After the Children performed Elaine Hall Moderated "The Children’s Panel".

I cannot tell you all the children’s names... this is my first attempt at note taking during a conference, I apologize, I can't read my chicken scratch.



Neil, Elaine Hall's son types while Elaine reads.



Ido is 14 and he types while another woman reads. I loved that part. It really showed me that just because someone is non-verbal does not mean they don't understand. The whole thing should be made into an HBO Special so others can feel the emotions I did. Ido typed/said this: talking is nearly impossible for me, thinking is not. I will not give up and I will fight to help people find their voices.



When asked by an Audience member what do we do to connect with our children, Wyatt, whom is verbal, says:

Do what the kids do.

if your kid spins..

you Spin...

then they can be

a Spiritual person

like the Dalai Lama.

Audience erupts into Applause and laughter



When asked what do you see yourself doing in the future when you are an adult, a cute adorable teen says:

Having a family and successful career that pays the bills.

(Crowd Laughs and Cheers!)

Ido: I hope Autism is cured but if its not I will work in the Autism Field.

another sweet young teenage girl stated...

Elaine sees herself as a Teacher and so do I.



Elaine Hall


(taken off the Miracle Project website)


Elaine Hall, “CoachE!”


The New York Times references Elaine Hall, “CoachE” as the “Child Whisperer,” based on the extraordinary and compelling theater arts program, The Miracle Project which she innovated for children of all abilities. She is the subject of the two time Emmy Award winning HBO documentary Autism: The Musical and has appeared on CNN, CBS News, Oprah Radio and featured in The LA Times, New York Times and Wall Street Journal.


Elaine is also a professional Film and TV Acting Coach. Writer/Director Doug Atchison,(Akeelah and the Bee) says that Elaine must have a “been granted a magical visa into the world of children.”


When traditional therapies did not work for her son, Neal, adopted as a toddler from a Russian Orphanage and diagnosed with autism at age three, Elaine sought out creative people (actors, musicians, writers) to join his isolated autistic world. These methods evolved into the creation of The Miracle Project which has garnered worldwide attention.


Elaine is a keynote speaker and presents workshops throughout the United States and Canada. She has written and directed over 30 children’s plays. Elaine has been honored by Autism Society of Los Angeles, Autism Speaks, Areva Martin’s Special Needs Network, Holly Robinson Peete’s HollyRod Foundation among others. Hall serves on the L.A. Senate Select Task Force on Autism, and spoke at the United Nations. She created and directs an arts enrichment program and a Bar/Bat Mitzvah program for children with autism at Vista Del Mar, in Los Angeles. She lives in Santa Monica, CA, with the two loves of her life, her teenage son, Neal her husband Jeff, a Play Therapist. She is the author of, Now I See the Moon: a mother, a son, a miracle. (HarperCollins).


www.themiracleproject.com



Another Audience Member asked What do you like to do?

Tristan likes to play with friends, sing.

states: Dreams really do come true.

Neil says: I like to go to the Park

Ido: I like Hiking



Pro: That was the coolest thing ever. I have never been to a conference where the kids are speaking and we can do a Q & A with them. You could tell each Child wanted to be there. The parents were not the focus the kids were. I don't even know who in the Audience were their Parents. Elaine Hall was only present because she was a huge part of the conference.

Con: Absolutely None!



***** 5 AILB Stars



1pm: Breakout Session

There are three sessions we were able to choose to attend

1. Top 10 Tips for Creating The Team for Your Child

2. Personalized Lifetime Support: Transitioning Teens to Adults

3. Therapeuric Approaches for Families with Kids in the Spectrum



I chose the first one.



The Panel consisted of the following persons:

Edie Bartnof, M.A.

Carol Ackerman, M.A., CCC-SLP

Larry Daniels, Parent

Cheryl Feldmann, Ph.D.

Kathy Khorramian, M.A.

Marianne McKim, OTR

Susan Schmidt-Lackner, M.D.



I really enjoyed the fact they had a parent on the panel. He was an awesome man. Very caring and intune to his childs needs. I also found it interesting and comforting that they chose a father. So many times we hear horror stories of us Mothers being left behind to pick up the pieces.



handout (Vista School)


Top 10 Tips For Creating The Team For Your Child


1. Notebook should be kept to include assessments, notifications, Individualized Education Program (IEP) and any relevant documents for the educational process of your child.






2. Parents should think of themselves as the captains of the Educational Treatment Team.






3. It is imperative that parents/guardians become aware, and clear, of their educational and legal rights.






4. Parents should be familiar and understand procedural rights and safeguards for the IEP process.






5. Make sure that the different agencies and professionals have permission to communicate with one another.






6. School that child is attending should have access to all assessments completed by professionals within the agency as well as any additional outside assessments/reports






7. It is okay to think "outside of the box" when it comes to your child and family.






8. Attend support groups through a variety of agencies such as child's school, Protection and Advocacy, Regional Center, conferences, Department of Mental Health.






9. Collaborate with your treatment team. This includes the School program (teacher, language and speech pathologist, occupational therapist, counselor, clinician, physical therapist, adaptive physical education, nurse, behaviorist), non-public agencies, medical provider, Regional Center, Department of Mental Health.






10. Engage with your child and enjoy every moment



Pro: I really enjoyed how the panel reacted with each other and if I lived nearby my son would definitely attend Vista School.

Con: The panel spoke about a hypothetical situation with a boy who acts out. It was interesting but I would have preferred a few more scenarios. I also got lost a bit trying to figure out if the kid was really made up or a true kid and I began focusing on that and missing a lot of the message.



*** 3 AILB Stars

I had to leave at Q & A at the end. It took me a total of 6 hours round trip by train and bus to attend to represent our Autism in Long Beach Families... these notes are for all of you who couldn't attend. The working parents, the financially struggling, the lack of childcare, and the family I've grown to know and love... enjoy!



THANK YOU VISTA DEL MAR, ELAINE HALL AND THE MIRACLE PROJECT, AND THE BARONS.. THIS WAS THE BEST CONFERENCE EVER!






OVERALL: *****5 AILB STARS

Stephen Shore, Ed.D

Eustacia Cutler

(Temple Grandin's Mother)

Jane AILB (Autism In Long Beach)