Autistry Newsletter – October 24, 2014
Posted By Janet Lawson, MFT on October 24, 2014
This has been a whirlwind few months of events, activities, and amazing projects. We host our annual fundraising event in October because the spring is so filled with nonprofit events and because we love the feel of fall – warm yet hinting at cool weather to come, leaves turning and plants slowly settling in for a long nap. The perfect time to gather together and strengthen community bonds. And that is what we we have been busy doing!
Mini Maker Faire: On Sept 13th Autistry hosted the Creation Station at the Greenbrae Mini-Maker Faire. It was a huge hit! Amelia, with help from members of the Autistry Support Network, created unique costumes, role-play weapons, creatures, and jewelry for children of all ages. The Autistry team worked with cardboard, hot glue, glitter and all sorts of other wonderful stuff to help make real the fantastical ideas that the children and adults brought to them. At the end of the day we realized that the Creation Station is a actually mini-Autistry! We have been asked to return next year and we most certainly will. We can also take the Creation Station to other events.
This Faire brought to you by: At the VIP Social Saturday October 18th for our major sponsors we turned the messy warehouse into an elegant fairy-lit dream world – complete with cardboard racetrack, white linen tablecloths and professional flower arrangements (thank you Mindy!). Our sponsors, Nissan Infiniti Marin, The Waite Family, Marin Sanitary Service, Presence Product Group, and the Murphy Family enjoyed racing the specially crafted remote control cars around the track. An exquisite array of hors d’oeuvres provided by Whole Foods of San Rafael followed by scrumptious lemon squares from Mariposa Baking Company fueled the race car drivers. Sara’s secret recipe sangria kept their spirits up.
2014 Autistry Eco-Tech Faire: we used our powers for good! Our eco-friendly themed faire was a huge success. Not only did we raise a healthy amount for the Autistry Opportunity Fund we all had a great time. The racetrack was the big draw as kids large and small powered around the domes and flew through the straight away.
This year we added the Obstacle Course where the low speed crawlers climbed over piles of debris in their attempt to reach the domes.
Amelia’s Rainwater Reclamation Garden Shed was on display. With donations from The Urban Farmer Amelia created a shed perfect for these current drought conditions. The Faire Food was also special – DeeDee Vierra of Renewable Energy Products brought down one of her Louisiana Pellet Grills and grilled chicken, sausages, and portobello mushrooms so tender that even the paper knives cut right through! Sara Gardner added her culinary touch with yummy salads! And, we have to send a huge thank you to Brook Leone and her sister Jordan for painting so many awesome faces. Lions and kitties and sharks, oh my!
Coming up next: The Scientists & Artists…Party #3! Join us for science, art, and fun on Saturday, November 8th. 7pm at Autistry Studios. This is our biannual celebration of creativity. Party #3 presenters include Rachel Brem, PhD, Buck Institute on Aging • Ken Pontac, screenwriter and animation director • Cliff Saron, PhD, UC Davis Center for Mind and Brain and the MIND Institute • Artist and costume designer Angelique Benicio • PLUS a demo of martial arts from Al Loren and his students; and a human-sized Jenga game. And, yes, there will be karaoke!
Ian is bravely trying out a college class at College of Marin. While it is not a community college in San Francisco complete with dorms, (one of Ian’s current dreams), it is a huge step towards the independent adult life that he is trying to build for himself and that his parents are working to support with all of their hearts. In true Dan and Janet fashion, when they looked at the current programs to support students with disabilities at the local community college and found them lacking, they set out to build something better. 
Thus I am attending the class with Ian, not only to support him as a student, but to investigate the nature of supporting ASD (Autism Spectrum Disorder) individuals at the college level. In addition to thinking about balancing Ian’s needs with those of his teacher and classmates, I am going to be doing my best to think about how this support could be scaled up to meet the needs of other ASD students.
One of the joys and challenges of working with ASD individuals is the incredible diversity of their skills, talents and needs. During our first day of class, I noticed that Ian’s tendency is to tune out the intense verbal language of the lecture component of the class. While doing this, he is still working hard to stay regulated and to present an outward impression of paying attention. He is quiet and still at his desk and looks toward the teacher as she talks. Asking him questions, prompting him to write down essential concepts and reminding him to pay attention were strategies I tried to increase his level of attendance to the material being presented. I am helped in these efforts by the nature of the class, a drama class which teaches fundamental acting skills. As such, the class is taught by a woman who has a background in acting and who conducts her class in an engaging manor. High levels of affect naturally interest Ian, and prompt him to attend to the material. Another helpful element of the class is that the students tend to only spend small chunks of time on lecture material before being called to their feet and asked to put principles into active practice.
During the circle exercises of the first day, passing names and gestures around a circle, first methodically and then in a random pattern, Ian displayed a very high level of engagement. He not only “got” the games, he was good at them. Over the course of these exercises, I saw the students’ perception of Ian change. Their attitude shifted from one of curiosity to one of interest, and he was chosen often by his peers to participate. He was good at remembering the names of his peers and who had or had not been already chosen. It was gratifying to see Ian engaging and succeeding. Our only interaction during this period was when he would catch my eye from across the room and I would give him a smile or thumbs-up. This first day showed me three different levels of engagement and motivation that Ian currently possesses. There was a language-based lecture that he needed a high level of support to gain benefit from, a short film sequence and some short monologue performances that Ian watched intently and was able to comment on with very little scaffolding/prompting, and there were the active exercises, which he was able to attend to and participate in without support.
The drama exercises can be viewed as intense focused social interactions that follow distinct sets of rules. With these rules in place, Ian was able to have prolonged interactions with his peers, both one-on-one and as a group. This component of the class is important, challenging, and highly motivating for Ian. He is a member of an ensemble. He is having to stretch himself to fulfill his obligation to the ensemble, and some of his peers may be having to stretch their perception of disability in order to fulfill their obligations to him. I find this to be incredibly healthy stretching for all parties.
Speaking of which….we are in full faire preparation now. This year’s theme is Eco-Tech: Using our Powers for Good! The staff and students of Autistry chose this theme as they feel it reflects their concerns for the environment and their desire to help create a sustainable world. We are very proud of their commitment! On display will be student projects like a lightweight teardrop trailer, planter box gardens, models of ecologically savvy small-footprint houses, and more. And, the very popular recycled cardboard racetrack will return – bigger and better! 
We have come to see that this is a pattern of ritual experienced by many families with an ASD child. The signature is “I get to do this thing I want, when I want, the way I want or I will blow up! And make you [pick all that apply:] embarrassed, scared, afraid the neighbors will call the police, etc.”
We will not call what we did “calling his bluff” because ASD kids do not bluff. The next night we drew the line. And Ian blew. Dan physically moved Ian back to his room and let him continue to tantrum. Again, Ian was 9 so we were able to physically manage him without damage to us or him. Ian yelled, screamed, and threw things for about 90 minutes until physically exhausted. We allowed him to do one of the alternatives we had offered and he finally went to bed.
Consistent boundaries mean that once you have defined a boundary, you must not in any way signal that the child can overcome the boundary (overcome you), by tantrum or sheer stubbornness. Additionally, everyone in the child’s life must adhere to the same boundary (We discuss this more in later sections: we find that inconsistent boundaries across different environments and with different adults in a child’s life teaches them to lie and be sneaky).
That evening we informed Ian that he had lost his computer privileges until he could behave himself when in our car in heavy traffic. He promised never to do it again. But we said that promises were not good enough and that he would have to show us he could handle the frustration of traffic. He was VERY unhappy and upset with us. But he thought about it.
That Ian was able to challenge himself to tolerate his traffic frustration encouraged us to have higher long term expectations for him. We realized that for Ian when presented with a desired goal, given defined boundaries and appropriate support he could change negative behaviors.
Our son is autistic and his autism has driven much that we have done and learned. Ian was born early in 1995 while we were living in Bloomington, Indiana. Dan was a Ph.D. candidate at Indiana University studying Astrophysics. Janet was a librarian at the local public library and was working on her Masters degree in Library and Information Science at IU. Towards the end of the pregnancy Janet’s blood pressure started to increase and she was diagnosed with preeclampsia. As her due date approached her doctors worked to induce a normal delivery. After nearly two weeks Janet’s condition deteriorated to eclampsia and Ian was delivered by emergency c-section. Ian was full term and a very healthy baby at birth.
But as the months passed he began to miss the usual milestones of speech development. We had one of those “What to Expect…” books and noted with increasing worry and dread each “normal” milestone he missed. He did not babble in a speech-like way in the early months. He was not drawn to noise-making toys nor did he imitate different speech sounds. He seemed totally mystified by games of Peek-a-Boo. But he always smiled. He made eye contact. And he loved to be held. Ian seemed to communicate without words. And though we thought his utter fascination with cupboard door hinges, the pliability of a sheet of paper, or the concentric ripples in a dog’s water dish was a bit eccentric we simply chalked it up to being the son of a scientist. We took comfort in the stories that Einstein didn’t speak until he was 3 years old. Even though Ian never measured up to the What to Expect timelines he nevertheless developed into an attractive, engaging and affectionate child.
For financial reasons Dan quit school before finishing his Ph.D. but found that his programming skills were in very high demand back where we grew up in the San Francisco Bay Area. We moved the family to Marin County in 1997. Ian was two and a half. We did not know any pediatricians in the area so Janet somewhat randomly chose the first one found in the health insurance providers list. This doctor happened to specialize in developmental pediatrics and their first appointment, a simple well-baby checkup, stretched into nearly three hours and ended with the doctor solemnly stating: “I think we need to consider the possibility that your son is autistic.”
She considered Ian to be a “low-functioning autistic”. The worst diagnosis they give. Dan remembers that the only literature he could find was that people with that diagnosis had an 80% probability of being institutionalized as adults. At that time there was very little literature to look at and none was particularly encouraging. UCSF had a list of many things they wanted Ian to do with them but we quickly saw that all they were interested in was studying Ian, not treating him. The lack of guidance as to what we should do was very upsetting to us.
Ian, like most young children, loved Winnie the Pooh. When he first began to talk he would stay up all night reciting long passages from the Disney movies. His lilting sing-song voice was not a good lullaby so Janet was up all night with him. So she too memorized the Winnie-the-Pooh dialogue. One night as Ian recited the well worn lines Janet took the part of Tigger – “The wonderful thing about tiggers, is tiggers are wonderful things…” Ian whipped his head around, looked her right in the eye…and then burst into laughter. She had entered his world. That was the first night he fell asleep before 3am. Janet had found a way to connect with him in that very special world of his imagination.
As the parents of a newly diagnosed autistic child we entered a world where it felt like every week brought a new Thing We Could Do to Cure Our Child. Music! Horses! Computer games! No computer games! Magnets! We looked into all of them. Everyone we knew sent us literature they had found. “Have you tried….?” There was constant guilt that we were not doing enough. Constant frustration when the weekly “cure” turned out to work on ONE child in the entire world. And then friends would keep sending us information about that same cure for the next month. We came to call this: living with the threat of a cure (that you did not take advantage of!).
In Ian’s schooling we generally received good service by collaborating with the districts as best we could. We tried wherever possible to provide extra help and materials to support the classroom teachers. And we mostly managed without huge legal battles – that is not to say that there were never heated negotiations. But the outcome was always agreed to be in Ian’s best interest. Ian is currently a senior in high school and will graduate with a certificate of completion with the same group of kids he has been with since fourth grade.
It’s almost Valentine’s Day and the love is flowing at Autistry. Last Friday, 
Our School Partnership Program got off to a great start in January. Students from Oak Hill School and Star Academy are coming each week to Autistry to build stuff. And there are some great projects happening: guitars, clocks, bead-work, lathe-work, and much, much more. Our staff works closely with the school staff to provide a creative, inspiring and confidence building experience for each student. As Autistry expands we would like to include more schools in our partnership program.