On the Road With Autism

My journey of discovery. I welcome your comments!



2011-2012 Lecture Series Takes a Therapeutic Path

September 2011 Rudy Simone, author, speaker & Self-Advocate for those on the spectrum presents on Asperger & Employment. Rudy described her life on the spectrum. She explained how scary faces were & explained the anxiety & fears of people on the spectrum. She explained how she might freeze or flee a situation. She urged neuro-typicals to understand more how it might feel to those with Asperger. She explained how going to work has them leaving their comfort zone. Rudy explained the disappointment of the person on the spectrum thinking all they have to do is hard work & they will succeed. Nope, got to make small talk & talk about things of no interest to be accepted. Rudy said people on the spectrum must learn & then practice social scripts & etiquette for working. Rudy said employers should welcome their logical decision making, their honesty & their pride in their work. She listed supports that can help (maps & GPS, planning lists, wardrobe help, asking for instructions in writing instead of verbally). In her book Asperger & Employment there is a great tool for mapping out your best personal job. It is important for the person with Asperger to identify interests, current skills, job skills required, what the plan for getting skills is, triggers that could limit accepting certain positions and the solutions to all challenges they have identified on the Job Map.

The October 2011, Movie Time Social Learning: Using Kid-Friendly Movies to Expand Social Thought was presented by Anna Vagin, Ph.D., Speech & Language Therapist. Anna explained her Social Time Movie program, which uses popular movies as a tool to teach social thinking & to build language skills. Anna shared how she had her clients choose movies they truly liked so as to engage them. Then together they watched them, identifying feelings of characters, intentions, perspectives, facial expressions, gestures & other non-verbal language characteristics. Then she used role playing. Anna also helped us understand how gesture language often comes before language expression & how our kiddos need to develop a gesture system to help lead to verbal expression.

The Power of Play was the November 2011 lecture with Registered Music Therapist Lizz Domash http://www.marinautism.org/macresourcedirectory/listing.php?id=66 & Liz McDonough, licensed MFT http://lizmcdonoughmft.com/ & registered Drama Therapist. Both therapists explained the importance of PLAY. They demonstrated how play activities help build problem solving, spatial awareness, fine motor control, reading, math, social skills, listening skills, language development, visual skills, cooperation & coordination & motoring planning. Each therapist designs drama activities, art activities, movement activities, & music activities in schools & in their private practices to help children develop & grow in the above areas. Music, Art, Movement, Drama area also fun & engaging. Children hardly know they are working on all those developmental levels when involved.

January 2012 lecture showcased the LindaMood-Bell Learning Center’s reading program for ASD. Kat Vaughan, MBA & Center Director presented the lecture “Improving Reading Skills in Students with ASD”. The strategies that truly work with students with Autism are sensory input, visual imagery and language comprehension. Our students need to see the words in their minds. They need to also see the directions given to them in their mind. They need to work on word meanings so they can comprehend what they are reading. Pronouns are challenging and need to be addressed. Coming up with a main idea of what was just read is another activity needed.

The February 2012 lecture “Yoga Therapy for Every Special Child” was with Nancy Williams a Speech & Language Therapist from Arizona who had earned her Adept Instructor of Hatha Yoga certificate. She realized that Yoga & Neuro Developmental Therapy, another certificate she obtain could help special needs kiddos acquire a broad range of skills. In her presentation Nancy focused on how Yoga can improve the quality of life for our kiddos, increase their breathing, & help them self-regulate, socialize, process sensory information, sleep better & communicate. Her book, Yoga Therapy for Every Special Child http://www.amazon.com/Yoga-Therapy-Every-Special-Child/dp/1848190271 is easy to learn from & incorporate in classrooms and therapy sessions.

Diane Hunter www.afterautism.com , mother of a son with autism & life coach kicked off our March 2012 Autism Lecture with “Beyond Words” Diane shared her story of her son Ian & her realization that she was communicating things to Ian that she was unaware. She explained to the families and professionals that it is important to learn how our non-verbal communication sets our students to succeed or fail. She explained the work she is doing with parents and professionals, working with their non-verbal language systems (tone, pace, facial expressions, proximity, touch, eye gaze, inflection, volume and gestures) so they can get the best results & decrease their own stress and anxiety.

The April 2012 Autism Lecture, “Creating Therapeutic Foundations for ASD was presented by three amazing therapists, Christine Egan, MPH/PT licensed physical therapist, Miki room, OTR/L, licensed Occupational Therapist & Margaret Bourne, CCC/SLP, certified speech and language therapist. Their topic was all about an interdisciplinary approach to early intervention. It was apparent to all guests that it is critical for a collaborative team to be working together to resolve the complex challenges of kiddos on spectrum. Core Strengthening needs to be led by a physical therapist & strong body foundation set for learning. Sensory Processing challenges need to be identified by the Occupational Therapist and sensory strategies put in place to support learning at home, in school & the community as well as fine motor & motor planning. Addressing the receptive & expressive language challenges in all children with ASD is critical. Behavioral challenges stem from the inability to express needs, wants, choices, requests, likes, dislikes, confusion & anxiety. Without an effective communication system there will be behaviors that will express those needs. Language comprehension must be addressed so that our children can make sense of communication and what they read as well.

The final lecture of the season, May 2012 was offering the “Ten 10 Behavior Management Tactics for Children with Autism” and was presented by the Founder & Director of Gateway Learning Group, http://www.gatewaylg.com/ . Melissa shared the First/Then strategy, of having the child do a less preferred activity before getting to do a highly preferred activity. She told us providing choices is the next tactic. We might then set up a token system to increase appropriate behaviors & delay immediate gratification. Visual schedules provide understanding & clear expectations. Using praise is key but very specific. She said sometimes using Vicarious Reinforcement (complimenting on another peer) works too. Choral responding helps & teaching rules ahead of time also help manage behaviors.

As you recall, during my transition from Oak Hill School to Wings Learning Center, I volunteered on the Marin Autism Collaborative, helping to develop autism supports in the community. The Autism Lecture Series was founded by me in 2009-2010 to meet the needs of brining researchers, specialists, authors & therapists to the North Bay Area to offer state of the art information on Autism.  "Hear Our Voices" the 2015-2016 series will show case teens & adults living each day on the spectrum. It will again be hosted at the conference center in San Rafael at Marin County Office of Eduation.

But come with me as I share with you some of the amazing speakers & their wisdoms.

2010-2011 Autism Lectures focused on Different Perspectives for Learning

September 2010 “Teaching Parents to Become Effective Autism Services Consumers” was presented by Dr. Bryna Siegel, author, Developmental Psychologist & Professor in Psychiatry at UCSF Autism Clinic. Dr. Siegel helped the parents better understand their role, to find teachable moments to improve non-verbal and verbal communication & to understand how they can improve spontaneity of communication. Her advice was to look at their child from a learning challenged perspective. Once identifying the learning challenges then they can better match the interventions that will best support the learning challenge. Children with ASD have social learning challenges, expressive & receptive language challenges & sensory processing challenges &regulation. Dr. Siegel believes it is crucial for the parent to be trained and have a key position in intervening. She supports the Pivotal Response method to engaging children on the spectrum.

Robyn Steward http://www.robynsteward.com/ , kicked off our October 2010 lecture “Asperger from a Person Not Just a Textbook”. Robyn was inspirational helping the audience understand what it has been like growing up on the spectrum. She told us her stories about her challenges in school, connecting & making friends. She let us know that she recognizes people by their shoes. She is an artist & mentor. She likes to inspire those on the spectrum to know they can succeed & that there is “life after diagnosis. She stressed that people on the spectrum are creative. She let us know that she needs help regulating sensory input & often comes across very hyper-active. She loves to travel and speak out on behalf of the spectrum. She is the author of The Independent Woman’s handbook to super safe living on the Autistic Spectrum. 

The November 2010 lecture “Making Life Work…A Menu of Options for Developing Life Skills for Children, Teens & Young Adults on the Autism Spectrum” was presented by Kara Barber, parent advocate & author. Her curriculum is a creative way of helping our kiddos understand social communication. Prepare, Project, Practice & Produce are her core concepts developed in her curriculum. She has also developed a clear visual method for our teens to visual a social interaction with someone (A Menu!! There is a Starter to begin the conversation, the Meat and Potatoes of the conversation, the purpose & then the Treat, to end the conversation). Her curriculum contains all kinds of activities to teach skills her son was not learning to develop independence. http://www.kalahari.com/Books/The-Social-and-Life-Skills-Menu_p_39050203

The January 2011 Lecture featured Dr. Miranda board certified in Neurology, Electroencephalography, Neurological Rehabilitation, Sleep Disorders & Evoked Potentials. His lecture “A Neurologists Perspective on Autism” was interesting. As the founder of Bright Minds Institute he created a team of specialists to develop a goal-orientated plan of treatment. His plan included physical therapy, occupational therapy and behavior therapy. Dr. Miranda felt that many seizure disorders go unnoticed to the untrained eye in the autism population and there needs to be careful attention paid in this area. He felt it was very important to identify discharges in these kiddos as they affect cognitive and behavior functions. Temporal lobe epilepsy should be ruled out. He felt testing needed to be done during sleep as well, since 80 percent of discharges will occur at nighttime. He felt that MRI scans & EEG can be used.

February 2011 Lecture featured Dr. Kristin Whalen a licensed psychologist & board certified Behavior Analyst specializing in Autism. Her lecture “Computer Assisted Instruction for ASD” was well received. Dr. Whalen wanted to make sure parents & professionals understood how to choose programs that would work for children on the spectrum. She introduced The TEACH TOWN program which builds language comprehension in children with ASD & has been successful in a school environment and home environment.

Our March 2011 lecture “Auditory Processing Problems in Children with ASD was presented by Dr. Deborah Ross-Swain the Clinical Director of the Listening Center http://www.theswaincenter.com/ and The Swain Center for Listening, Communicating and Learning in Santa Rosa. Dr. Swain is a national speaker, writer and researcher. Dr. Swain supports that children with Autism have auditory processing challenges. They can have near or near normal hearing and yet not understand what is heard. She explained that Auditory Processing is what the brain does with what the ears hear. She cited studies that clearly indicate our kiddos have challenges discriminating simple auditory sounds. Dr. Swain gave some red flags to look out for (fails to respond to name, experiences hyper sensitivity, experience delays in processing, covers ears, distracted by noises, speech delays, seem deaf).

The April 2011 Lecture was presented by Leah Kuypers, M.A. ED, OTR/L currently practicing Occupational Therapy at Communication Works http://www.cwtherapy.com/ as a private therapist. Leah was there to present her newly developed curriculum, Zones of Regulation published by Think Social. Leah went over how this curriculum will work. It will explain sensory processing systems, outline executive functions that impact self-regulation, explain emotional regulation, teach a systematic way for students to self-regulate, cite strategies to identify ones level of arousal & then describe how social cues can be used to determine appropriate arousal levels. She then identified ways to integrate the Zones into regular settings. http://www.amazon.com/dp/0982523165/?tag=mh0b-20&hvadid=4162882971&hvqmt=e&hvbmt=be&hvdev=c&ref=pd_sl_8lzs2p1hbf_e

The final lecture of this series occurred in May 2011 & was presented by Dr. Melanie Johnson www.melaniejohnsonphd.com and Janet Lawson www.autistrystudios.com , parent and MFT. The topic, “Parenting ASD Children across the Lifespan” was inspiring. They acknowledged that there is a large diversity in ASD and parenting is very complex. Parents have to find a balance within self, family and community. They discussed the roles parents play as the child moves from infant, toddler, pre-school, adolescent, young adult & to middle age. The parent of a child with ASD is making critical decisions about health care, education and often postposing their own careers. The parent can often remain the primary caregiver throughout the child’s life having to consider financial stability & residential needs. They explained the impact on Marriage. They offered that 80% of parents with ASD children will divorce. They discussed the stages of Grief (shock, anger, confusion, depression, guilt, shame, fear, bargaining, hope and acceptance.) They ended the lecture providing strategies (developing a support system, accepting help, gathering information & realize that you can’t do everything so learn to delegate!!)

 

Years Seemed to Fly By

During the 1st 4 years I was so proud to see the growth in students communication, independence, community access,  regulation & group participation.

I saw how Jazzy's confidence expanded as she took on new volunteer sites like San Mateo Credit Union and Savers.  I smiled when Jonathan tried new foods. I loved my meetings with Dominic as he shared his "Good Day" story with me.  I watched Alex's chair move closer and closer into his cirecle of classmates and I observed Toby, Amanda & others take their toilet icon to the bathroom with staff seveal paces behind them.

There were many success in program.

There were also many in infrastructure.

  • We held open houses inviting the community in
  • Updated our Web Site
  • Began a South Bay Autism Lecture Series
  • Began a South Bay Autism Resource Fair
  • I attended all Individual education planning meetings with districts & private families in the beginning
  • We developed a signature fundraiser
  • We develop a quarterly newsletter
  • We encouraged public schools to visit
  • We updated our curriculum & assessments
  • Increased parent observations & training
  • Established faculty ongoing training in all foundational areas
  • Added outside experts for mentoring
  • Established internships with Universities (OT programs, teacher training programs) http://www.dominican.edu/ , http://www.ndnu.edu/
  • Established partnerships with adult programs ( http://www.kainosusa.org/ )
  • Developed a social media presence (Face Book & Linked In)
  • Built a new school site
  • Expanded our student and faculty census

Knowledge of Wings Learning Center's program expanded throughout the special needs community....just like the arrivall of Dorothy in the "Land of OZ"

Today Wings is once again at a crossroad, with a bright future ahead but wondering in which direction to travel next.  A strategic planning process is in process & the board, community & I are imagining all the places we might go.

Future Roads To Journey for me

1) Mentor & coach future leadership

2) Identify new resources & enhance sustainability for Wings

3) Explore the idea of adding adult programing, consulting or  additional sites

So, for now I continue to Journey on with Wings Learning Center & explore my Global work in deveoping countries

 

A Great Model & Its' Okay to Let Go

When I arrived at Wings the faculty & team were feeling a sense of failure as they had been unable to find the most effective strategies to meet the needs of one of their long term students. They felt such a deep commitment to this student & his family that they continued to try interventions with little success, as not to let down anyone. I brought in an outside behavior specialist  to ensure we had tried all possibilities. The student was a young man who truly required a one on one program with all activities of his preference. If this did not occur his anxiety increased & physical ways of rejecting were faced by the team. His sensory sensitivities were also high & so activities within groups were very challenging. The team was tired.

It was my responsibility to help them understand that they had given this placement their greatest effort possible. Eight years plus of working with this student should be honored and valued. I tried to help them understand that Wings isn’t always going to be able to help every child & that is not failure on their part. I tried to explain that sometimes change of placements are the best intervention.

They were tired, other students were feeling the effect of the student & it was getting very hard to provide a program of benefit. It was our responsibility to recognize this, meet with the family & district & be a positive part of his moving on. This was hard on everyone, but needed.

Today this young man has his program based out of his home, with a one on one that can provide daily routines & activities that bring this young man a sense of satisfaction. Today this family is still very involved in Wings Learning Center.

Students come into Wings Learning Center without communication, with limited toileting skills, limited hygiene & independent living skills, rigidity, sensory challenges, poor motor planning & challenges with learning in a group, traveling safely in the community & accepting responsibility for their actions on others.

The strong foundational model that exists at Wings provides a way for all these learning differences to be helped & for students to acquire new skill sets but sometimes as hard as we try we are unable to meet the needs & so we help find other supports.

  • The TEACCH model (http://teacch.com )provides environmental structure & builds independence
  • Visual Schedules (http://www.child-autism-parent-cafe.com/visual-schedules.html )provide students with a place to start & finish &help decrease anxiety & support executive functioning challenge
  • Social Picture Stories http://thegraycenter.org/social-stories provide structure, build comprehension & help build positive alternative behaviors
  • PECS (http://www.pecs.com/ ) a picture communication system provides non-verbal students an opportunity to express themselves through pictures
  • AAC (Augmentative & Assistive Communication ) (http://www.asha.org/public/speech/disorders/AAC/ ) provides a variety of devices and software to students with a way to communicate their needs, wants, feelings and to respond to questions
  • Occupational Therapy (http://www.aota.org/consumers.aspx ) provides interventions to address fine motor, gross motor, motor planning, attention, focus, sensory processing & regulation, balance, strength and endurance so that students can better access their education and life
  • Speech Therapy (http://www.asha.org/public/speech/development/language_speech/ ) provides interventions to address receptive language, expressive language, pragmatics and voice challenges
  • The SCERTS (http://www.scerts.com/ ) model helps faculty plan effective goals in social communication & emotional regulation as well as identify effective supports for learning
  • Meaningful & purposeful activities are developed to engage students, increase generalization & help prepare the student to live with purpose
  • Interest-based activities are used to inspire and engage participation & learning and to value & build upon talents, interests and gifts which may lead to long term job opportunities, social & leisure activities & recreational opportunities

 A strong foundation exits at Wings Learning center & it was now time for the special education Community to know it.

Back on the School Path

Back on the School Path…. Wings Learning Center

My plans were to come in as the interim director, help the board build a highly respected program for students, families & staff; one the special needs community would honor & value. There were first year challenges: building trusting relationships with the faculty & families, taking care of state department of education requirements & building a sustainable budget.

First Year Lessons

  • Obtain input from ALL staff & faculty on strengths, challenges & needs
  • Meet with ALL the families & listen to concerns & expectations
  • Offer to meet with Special Education Local Plan Area & County & local districts to obtain feedback (good, bad or ugly)
  • Establish an open door policy with all stakeholders& be honest, transparent but establish boundaries
  • No matter how hard take care of all the RED FLAGS as professionally as you can
  • Observe every part of the program
  • Review ALL systems
  • Decisions will not be like by all
  • Some solutions will need to wait
  • Provide faculty & staff with knowledge they need to understand solutions proposed
  • Help faculty and staff develop professional boundaries
  • Be okay with asking too many questions (staff told me I asked too many), better solutions with greater knowledge
  • Be okay with my first faculty& staff evaluation not having high numbers (change is hard, new communication styles can be challenging)

A Drive Worthwhile

It was a long drive to Wings Learning Center, over the Golden Gate Bridge, down 280, then 92 & then 101 to the Whipple exit, but it was so, so worth it. Every teacher, every therapist & every instructional assistant was so committed to making a difference in the lives of the students with ASD attending the school. The Board of Directors were so passionate about making Wings the most effective program for children and families. I had my goals set for me the first year: resolve any & all system challenges, rebuild a sense of security for staff & families and find ways to help Wings become a sustainable organization. Okay…

I remember that the day I started was the same week Toby started. He could clear off a table full of objects & papers faster than anyone I knew. He had no communication system & dropped to the grown every few steps on his walk in the community so the staff figured a way to take him for walks with in a red wagon to begin with. This also stopped the darting off into the streets. He was unable to join group learning & required constant one on one to keep engaged.

With patience from the team, support from his family & the Wings Model, Toby not only grew taller, but acquired communication through pictures & then assistive technology. He not only learned to be in the community without being pulled in a wagon, but to access the library, grocery store & other community businesses with support. He also participates in group activities.

What I admired most about the faculty was their ability to remain calm, quiet & give the student time to process a direction before ever stepping in too fast with prompting. I had observed lots of educational programs where the teachers were constantly giving directions & making demands. If the student didn’t comply immediately they repeated & repeated. Not the Wings team. They waited, said nothing again. It was so satisfying. The Wings team were also experts at designing visual schedules, structuring tasks for success & designing meaningful lessons for the students to engage in. They were magical at writing social stories to help students prepare for new activities, learn social skills & learn new behaviors.

The therapists & the teachers worked collaboratively & the instructional assistants were treated as equal team players. I liked that a whole lot.

Yes it was well worth the 53 miles one way door to door from Marin County to San Mateo County.

On The Road Again

The board of directors at Oak Hill School decided it was time to take the school in a direction of which didn’t align with my Autism Journey. so after nearly 6 years I was on the autism road.

I provided a 9 month notice, prepared myself to journey on & prepared  all the written systems for my successor.

I knew, like the Tin Man, in the wizard of OZ, that I had a great heart, as it was truly affected by this switch in the road but I also knew that what was ahead would not only help me grow but othes as well.

So, for the first time in my career, since graduating school, I decide to take some time to discover where my Autism Journey was truly supposed to head.

I traveled a bit & then joined the development committee for the Marin Autism Collaborative http://www.marinautism.org/ & helped them develop a platform for the collaborative. I helped facilitate the collaborative’s first “Town Hall Meeting” & then headed the Youth Committee on Autism for over 4 years for the collaborative.

As a group facilitator & committee chair I learned quickly the needs in the community & as a volunteer worked at creating & implementing projects for the ASD community

I started the 1st Autism Lecture Series in the North Bay Area, connecting my resources in the field to parents & professionals. On my own I raised funds to put on the series & 7 years later, I am still hosting the series under my non-profit Offerings http://www.globalofferings.org  

I am so grateful to my lecture sponsors through the years (Cypress School http://www.cypress-school.org/ ANOVA School http://www.anovaeducation.org/ Oak Hill School http://www.theoakhillschool.org/ Wells Fargo North Bay Area, Craven Foundation, The Oken Family, The Massocca Family, The Ryder Foundation http://www.ryderfoundation.org/beneficiaries.html, Marin County Office of Education & Psychology Learning & You http://www.playbc.biz/ ) all of which were connected to the Autism World in some way.

The Series (www.offerings.org) has brought researchers, specialists, educators, parents, authors & therapists to the North Bay Area to offer state of the art information on autism to the general community. I am so very proud of this accomplishment & look forward to 2015-2016 series “Hear Our Voices” which will bring youth & adults on the spectrum to offer their wisdoms.  The series starts in September, one time a month and goes until May. The lectures are held at Marin County Office of Education in San Rafael. Connect with  me This email address is being protected from spambots. You need JavaScript enabled to view it. & come learn how it feels to live on the spectrum each day of  your life.

Never Forget Kevin Browne

Never Forget Kevin Brown

I woke up today& realized I had not told you anything about Kevin Brown, a student of mine in my first public school program in Sacramento. Kevin was the eldest student selected to be in the first public school program designed for Autism in Sacramento Unified School district. He was 18 years old & had spent many years in Napa State Hospital because people told the Browns, that they would be” lucky if Kevin became marginally human”. I will never forget those words spoken by the parents when they interviewed me for my first position. The district was truly collaborative to include a parent of a child with ASD on the interview team for the first public school program (1973).

Kevin was an “Autistic Savant”. These individuals with autism have extraordinary skills not exhibited by most people. Ten percent of the autism population have savant abilities where as one per cent have these abilities in the general or intellectually challenged populations. Savant ability may take several forms (mathematics, memory, artistic and musical ability).

Remember the movie “Rain Man”? It exposed millions of people to the savant phenomena. Remember Raymond. He had an amazing memory for ball player statics, telephone book numbers & could count cards. He also remembered every airport crash in his life and how many people were killed.

We do not now truly how these abilities are possibly but one theory is that these people have incredible concentration ability & can focus on very specific areas of interest.

Kevin could tell you the exact day you were born on when you told him your date of birth. He could also add, subtract, multiply & divide any numbers in his head.

Kevin was rather out of place in a classroom situated on an elementary site, but he was always happy to come to school.   He had no behavior challenges & wanted to please. Kevin moved quickly onto an adult program in Sacramento. His parents, both teachers always made sure his knowledge increased as well as his independence. Kevin’s brother Vernon was a great brother & looked after Kevin when his parents passed on.

Kevin taught me to be careful how I said things during school time. He was amazing at repeating things he had heard & often not at exactly the appropriate times. I think one day I was a bit frustrated with the lateness of the bus driver once again & said some words to those facts. The next day the bus driver stop in to let me know that Kevin let him know I was frustrated.

Kevin enjoyed drawing. He actually drew the cover to my published book Reach Me Teach Me http://www.amazon.com/Reach-teach-autistic-handbook-administrators/dp/087879171X/ref=sr_1_1_twi_1_pap?ie=UTF8&qid=1438789274&sr=8-1&keywords=books+reach++me+teach+me+autism

On The Road Once Again

On The Road Again

The board of directors at Oak Hill School decided it was time to take the school in a direction of which didn’t align with my Autism Journey

I provided a 9 month notice & prepared myself to journey on & began preparations of all the written systems for my successor

I knew, unlike the Tin Man, that I had a great heart, as it was truly affected by this switch in the road.

So, for the first time in my career, since graduating school, I decide to take some time to discover where my Autism Journey was truly supposed to head.

I traveled a bit & then joined the development committee for the Marin Autism Collaborative http://www.marinautism.org/ & helped them develop a platform for the collaborative. I helped facilitate the collaborative’s first “Town Hall Meeting” & then headed the Youth Committee on Autism for over 4 years for the collaborative.

As a group facilitator & committee chair I learned quickly the needs in our county & as a volunteer worked at creating & implementing projects for the ASD community

I started the 1st Autism Lecture Series in the North Bay Area, connecting my resources in the field to parents & professionals. On my own I raised funds to put on the series & 7 years later, I am still hosting the series under my non-profit Offerings http://www.globalofferings.org/

I am so grateful to my lecture sponsors through the years (Cypress School http://www.cypress-school.org/ ANOVA School http://www.anovaeducation.org/ Oak Hill School http://www.theoakhillschool.org/ Wells Fargo North Bay Area, Craven Foundation, The Oken Family, The Massocca Family, The Ryder Foundation http://www.ryderfoundation.org/beneficiaries.html, Marin County Office of Education & Psychology Learning & You http://www.playbc.biz/ )

The Series (www.offerings.org events) has brought researchers, specialists, educators, parents, authors & therapists to the North Bay Area to offer state of the art information on autism to the general community. I am so very proud of this accomplishment & look forward to 2015-2016 series “Hear Our Voices” which will bring youth & adults on the spectrum to offer their wisdoms.

Story 1

Let me tell you about one of the many memorable Oak Hill days. I had taken some time to go to In & Out Burger close by the school. I purchased two t-shirts & those very attractive hats the employee’s ware. I inspired my executive assistant to join me in, In & Out Burger day at Oak Hill. There were two large windows in my office that opened to the recess area. Perfect. We labeled the 1st one, Order Here & the 2nd one ,Pick Up Order Here.

We then ordered & picked up chocolate and vanilla milk shakes, fries & plan burgers for everyone at the school from In & Out.

I sent a memo to all teachers telling them I wanted to see them all & their students at the recess area. They had no idea what I wanted or what was about to happen.

They arrived & when they scanned the windows big grins & smiles appeared on their faces. The students were in heaven. They placed their orders & picked up their lunch.

I loved it.

Story 2

When I first arrived at Oak Hill School the faculty & staff were still feeling a lack of community due to some leadership challenges prior to my arrival.

The first process I instituted was a morning check in. We took 15 many 20 minutes to connect. I had a theme for each day (Music Monday, Tickles Tuesday, Wacky Wednesday, Thirsty Thursday & Film Friday). Staff shared their favorite music, jokes, crazy adventures, favorite drinks and films. This small activity helped begin to bring them together.

At the same meeting I would ask each of them to name one success they had the day before. I wanted to institute a half-full feeling at work rather than a half empty feeling. Things began to shift

TGIF meet ups at local restaurants, birthday celebrations and staff appreciation activities added to community building. Our yearly retreat in Napa Valley always brought the community together as well.

Story 3

Oak Hill School employed this amazing creative arts therapist. She appeared to have something just right for each & every student, hidden in her closet.

One day she asked if I would come up & be the audience for one of the students. I happily agreed. I watched Lizzy lower the art tables’ legs. It was now flat on the floor. She then pulled these frozen OJ can lids from that closet!!! And attached them to Reed’s shoe bottoms. It appeared that Reed wanted to tap dance to a favorite song of his

So Lizzy played the song on the piano & facilitated Reed stepping up on the table and tapping away.

Every Halloween the entire student body & staff dressed up in costumes & Lizzy put on an assembly to build trick or treat skills. She used puppets, musical instruments & a variety of songs to sing which had directions to follow.

She then played the old built in organ that lived in our hallway & filled the school with spooky music.

Finally the students paraded around the school grounds & knocked on administrators doors. “Knock, Knock, whose there, Trick or Treat”

At Thanksgiving time a thankful tree suddenly appeared in our hallway & it was Lizzy who worked with our students to create thankful leaves to hang on bear limbs until Thanksgiving arrived when each leaf was read, by our students at our Thanksgiving feast where students learned appropriate social skills for this type of holiday.

 

There are many stories I could tell you about as I remember the images on the Autism Quilt, but it is time to move forward & tell you how I headed back home after serving as the Director of the School for students with emotional challenges

Three years into my work at the school for emotionally challenged in Sacramento, I received a call came from a head hunter. Four families of children on the spectrum were looking for a Director to help them develop, implement & expand their current private center located in Marin County.

I was ready to start my journey back home to Autism. I had overcome my doubts of not being knowledgeable enough, not taking enough risks & I was ready to deal with the heart-break of leaving all I had created in Sacramento (family, friends & career)

The needs of these 4 families & their mission to establish the best school in the North Bay Area & my father’s encouragement gave me the courage to Start All Over.

I spent nearly 6 years as the Director of Oak Hill School http://www.theoakhillschool.org/ located in Marin City in Marin County. I was involved in getting this school certified as a non-public school with the California Department of Education http://www.cde.ca.gov/sp/se/ds/npsacrtapp.asp & developing relationships with local school districts, the SELPA (Special Education Local Planning Agency) hiring, training, & supporting the team as well as heading all program expansion & being the liaison with the parents, state & districts were some of my roles.

I also unplugged toilets with the Plunger when needed!!!! My students actually liked observing that job responsibility most.

We grew from 11 students to 25, from two classrooms to four and went from 90% private placements to 90% public school placements in the years I directed

Wisdoms I Learned at Oak Hill

  • Therapists & Teachers are equal in importance & must work together to address the complex learning challenges of ASD
  • Faculty & staff need to connect personally to each other in order to support each other
  • It is the responsibility of the Head of School to help everyone see the positives of each day
  • It is important to find ways to support the strengths & challenges of your team & not to expect everyone to perform in the same manner as you
  • It is important to prepare your team to present professionally at all Individual Education Meetings & to make sure parents & the school team are on the same page
  • It is important to be honest with families about their student’s challenges
  • It is important, as a leader, to be able to say “NO” professional to faculty and families
  • Never compromise your values & beliefs for financial support
  • Never take NO without trying everything possible to reach an important goal
  • Say Thank You every way possible
  • Know when it is time to move on & leave to make sure everything is structured & organized for the program to continue to succeed for the students

 

 

Daddy’s Princess

Lisa had thick, soft red hair and this amazing smile. When she was excited should shake her head from side to side, mouth wide open, making a sound like “yeiou, yeiou, arms stretched out in front of her, hands rotating left & right like she was turning the knobs of a door handle.

Lisa sucked her thumb to soothe herself & isolated herself when upset. She took her socks off frequently & twirled them around in front of her eyes. This twirling helped her regulate. I was in the kitchen preparing lunch & Lisa ran from the back of the house, crying and upset. My attempts to offer her comfort resulted in her putting her hand up and turning her back on me. She paced back and forth head down, twirling her sock. Her crying lessened. I watched her reflection in the window as she calmed herself down & was then ready to return to her daily routine, the sock now quiet by her side.

I remember how Lisa’s Dad spoke about her. I loved watching the way he adored this little red headed child with autism who could not say Daddy or let him know how safe he made her feel. You could see it in his eyes as he sat still and waited for her to just sit next to him. I loved the way Ken accepted his daughter for who she was and always maintained a sense of hope.

Statistics told us that nearly 40 per cent of children with ASD develop seizures during adolescents. Lisa was about 13 when she had her first seizure. Doctors asked us to maintain a log and keep a close eye on her. Within 6 months Lisa started to have seizures on a regular basis and doctors places her on medication. We kept a close eye on her especially in the evenings when her seizures happened most frequently. Bed checks were every 15 minutes at the Kaplan Foundation School.

Lisa responded well to structure, visual supports & the use of task analysis when learning her skills of daily living. In the beginning she required physical prompts, which faded to tactile, visual and then verbal. She learned best one on one but learned to work with another student and wait her turn. Toilet training was implemented during the first 6 months using Toileting Training in One Day by Azrin & Fox (without the doll). Lisa reached her goal one year later.

During the school day Lisa used a visual picture schedule and completed her independent work at TEACCH stations. During after school hours and weekends, Lisa and her house buddies engaged in every activity their typical peers engaged in (playing at parks, bowling, going to museums, talking walks, attending festivals, making trips to the library, going to the mall, dining out, going to the zoo, having picnics at the lake, swimming and roller skating.)

While the Kaplan Foundation served children until age 22, an adult program placement came available on her 18th birthday and her family needed to take advantage of the opening. Fearing that there would be no opening at age 22, Lisa was moved from the Kaplan Foundation. She had been at the Kaplan Foundation since she was 6. She had been one of the original 6. I would miss her smile, her red hair her quirky sounds and her innocence.

One of the saddest days was when I heard from her dad that Lisa had passed away. It was the first time I would attend a funeral for one of my students. It appears that Lisa’s seizure disorder was not carefully supervised at her adult program. She experienced status epileptic one evening & her staff did not notice. I still can see her beautiful face and amazing smile.

 

 

 

 

 

 

 

 

A day of Deep Pressure and Crashing into Fences

Most of our kiddos aren’t excited about exercise but it is one of the most effective regulatory strategies.

Kyle loved the water. He loved swimming under the water where his body could be totally surrounded by deep pressure of the water. His mom use to put a life jacket on him, tie a 100 foot rope to the back of the jacket and let him swim for hours in the lake whenever they went camping.

He also loved rollerblading but would run directly into the wooden fence to feel the deep pressure of the wood hitting against his skates. Once he learned to ride a bike he also ran the bike into the fence to feel the jolt from the impact. He would let us know by his huge smile and laugh each time he crashed.

Today, through the research of licensed Occupational Therapist, Jane Ayers we understand how proprioceptive activities like jumping, pushing, pulling, climbing. Swimming and heavy lifting help children with Autism Spectrum Disorders regulate themselves and reduce anxiety. Sensory integration intervention and sensory processing intervention play a key role in the therapeutic planning for children with ASD.

Kyle often slept better, had less body rotation and hand rotation when he had a day filled with swimming, rollerblading and biking.

Everyone Communicates

Kyle did not use words to communicate, but those who took time to develop a relationship with him knew when he was happy, frustrated or upset. When he stood on his tip toes, rotated both hands & arms in circles by the side of his body, moaning we knew he was excited or frustrated by the intensity. We knew when his eyes squinted, his nose tuned up and laughed that he was happy. We knew when he rotated his head & his face turned red that he was anxious.

But that was not good enough for those who did not know Kyle’s communication system. It was not good enough when he needed to let someone know he needed to use the bathroom, he was hungry or he was thirsty. It was not good enough when he wanted to ride a bike or go for a swim & it was not good enough when he needed to let someone know he was tired.

So, the first communication strategy we tried was Total Communication (signing & talking). A list of the 10 to 20 most common requests that Kyle made throughout the day was created (eat, drink, bathroom) & everyone was trained in using these signs as well as Kyle. The pronoun I & the verb, want, were added, but Kyle often left them off unless prompted to use a whole sentence.

We used the same strategies with Lisa & Leslie (two other children on the quilt) & then we added picture identification, asking them to give us pictures we named. We asked them to choose a picture representing something they wanted. We asked them to place pictures on, next to objects & actions they represented. We wanted students to understand that every object & action had a corresponding referent they could use to request, demand or comment.

In Kyle, Leslie & Lisa’s room their dressers had pictures of items located in them, on the outside of the drawers so they could locate & also put away clothing (socks, underpants, t-shirts). Kitchen drawers and cupboards had pictures on them so they could unload the dishwasher & work on matching objects while they learned their corresponding visual name.

All these strategies help build communication comprehension & expression while building independent living skills.

                           Kyle, blonde hair, blue eyes, always on his toes, finger flicking & open mouth moaning when he was over excited. Kyle, in diapers, never slept in his own bed, overheated easily, did not like certain textures of foods in his mouth, finger fed himself & loved to watch patterns in the water that he created by flicking his hands, fingers or feet. Kyle with no play skills, unless you consider dropping balls or other objects into a container, over and over again, an appropriate play activity. Kyle, who swam like a dolphin underwater, was the youngest child of the six children who first experienced the Kaplan Foundation way of life.

On his 8 inch quilt square, with its soft yellow fleece background was his name & spelled out in orange glue, thank you for caring about me. All this under his two PJ feet bottoms his mom had glued into the center of the square. The PJ feet bottoms that rubbed against the hardwood floors each night Kyle woke up unable to sleep wandering into the family room where I slept for the first 3 months of the program.

It was imperative for me to train each new staff person with me on the shift they would work so I could be sure these children would receive the best care and programing. I was totally responsible for the well fair of these children (physically, mentally, and emotionally).

Kyle’s feet, pitter patterning along the floors, were occasionally joined by his comrades in crime, Leslie a& Lisa both 6 years old, nonverbal & often dressed in the same soft, zip up PJ’’s with feet, reminding me of why these children had been placed in my care.

How many sleepless nights could their moms and dads take before their families would fall apart due to their inability to work, take care of siblings or maintain a healthy relationship with their partners? How long could they go without clarity of thought? How long could they continue to be present in their lives while they were physically exhausted?

So it was up to me to design a program that would help these PJ bottoms stay in bed asleep.

Kyle’s program as well as Lisa & Leslie’s involved integrating many of the following components to address their overall better health, sleepless nights, smearing of feces, bathroom accidents, anxiety, self-stemming & generalization of newly acquired skills.

(Diet, Toileting, Routine, Physical Exercise, Communication, Parent Training, Home Training)

Reflecting back on the years at the Kaplan Foundation, it truly took a great deal of Courage, Heart & Brains & of course a little touch of Magic to design, build, implement & direct a school for 20 years.

 Kaplan Foundation Quilt

I had taken the quilt which hung behind my desk at the Kaplan Foundation, carefully down, folded it several times until it made a one foot by 2 foot rectangle, placed it neatly in the bottom of one of the many boxes I was using to pack up the past 20 years of my life devoted to creating, developing and implementing a residential school for children with autism.

By my side was my soon to be best friend, a mom of one of the very first student placed at the Kaplan Foundation in March of 1979. Her son’s name was of the very first to appear on that quilt. It was this mom who facilitated the very creation of the quilt honoring my 20 year commitment to finding solutions & help for children with autism. It was this mom who took the time & patience to connect each square together so that in years to come I might be reminded of the children & families I had helped along the way.

There were 52, 8 inch squares each representing one of the children who had touched my life.

That quilt was buried with my hurt & stored in those boxes first in my house in Granite Bay, then my second house in Granite Bay, then in the attic in the San Anselmo home & finally in the linen closet in my home in Terra Linda before it was taken out on August 15th 2009, ten years later. I unfolded the quilt, lay it on the floor of my office, carefully reading each square & trying to imagine once again the face, the voice, & the unusual behaviors of that student who had moved my life in its apparently predetermined direction.

Seeing those 52 squares brought me right back to the afternoon I had to walk away from everything I had built at the Kaplan Foundation. I remember my attorney handing me a check from the settlement of the property for the foundation & his words, “You should feel good about this amount”. I thought to myself, you have no idea what any of this means to me. With tears streaming down my face, I thought, there is no amount of money that could ever replace the past 20 years of my life imaging, creating, building & growing a school for children & their families affected by autism.

I had lost my school as an outcome of a sad divorce. One person’s anger & insecurity had been able to take something very precious away from me.

But once again looking at the 52 squares, I realized he never really took any of the important things away. He never took away my passion. He never took away my knowledge. He could never take away my experiences & memories & successes lived at the Kaplan Foundation.

The road through the 20 Kaplan Foundation years was exciting, knowledge expanding, joyful, challenging, hopeful, exhausting & heartbreaking all at the same time. For a long time it felt like home but just like Dorothy, I experienced a Tornado that scooped me up & took me to another land!!

I was forced to give up the Foundation I had founded & find another way back home. No Rubbly Red slippers to click 3 times, just my courage, knowledge & heart to lead the way.

In losing my school I had to re-discover who I was. Did I have the courage, the heart & the knowledge needed to move forward?

As the wizard required Dorothy to go on an adventure to the castle of the Wicked Witch & return with her broom; I was being asked to take a detour from Autism in order to find my way back home

Gifts I acquired as the Director of an Intensive Mental Health School

  • Students deserve as much respect as the teachers who teach them. During my 1st year I had to let go nearly 60 per cent of the team & hire more effective & caring faculty
  • Students, no matter what their challenge deserve a safe & supporting environment in which to learn
  • Some students need something highly motivating to just get to school each day. At this school my first purchase was a huge barbeque & each Monday I had a barbeque with burgers & hot dogs for lunch. The students were always up for Barbeque Mondays!!
  • Faculty need to have all the materials & curriculum & equipment necessary to TEACH
  • I needed to form positive relationships with probation officers & judges in order to help them see our students’ needs, challenges & just to learn the system
  • Each student has his or her gifts to be developed & history to be understood
  • Not all families are capable of providing a safe & nurturing environment for their son/daughter and must be supported
  • Many techniques for the student with ASD benefited students with social/emotional challenges
  1. Planned Ignoring
  2. Re-direction
  3. Cognitive Behavior Therapy
  4. Purposeful & Meaningful goals, curriculum & activities as well as fun & engaging self-interests for teaching
  5. Providing trustworthy & knowledgeable & creative teachers & therapists
  6. Working with families is key when possible
  7. Understanding their social challenges & helping them to develop copying strategies

Most importantly: Students just want us to be honest, follow through on our promises, keep them safe & believe in them

The Kaplan Families

  • It was important that parents had the capacity to participate in their son or daughter’s education. For some parents, I found, placing in a residential site meant detachment but placement at the KAPLAN FOUNDATION would always be different
  • Residential parents were required to remain parents, learning how to support, guide their child’s program
  • Participation at Special Olympics as well as monthly connections to their son or daughter through calls, postcards, book by mail, music in the mail were expected
  • Opening their own homes to in home training was expected
  • Day parents were expected to observe, train on site and be trained in their homes as well as attend all family events
  • Siblings & grandparents were welcomed to all events
  • It was important to help our students stay connected to their families as well by sending cards, letters, drawings home monthly and on holidays and for celebrations
  • A parent handbook was developed & a quarterly newsletter sent out so that families could understand program components & stay up to date on activities in their child’s life
  • Parents were required to observe the program on an ongoing basis & be trained in all interventions and strategies
  • Parents were expected to have their son or daughter home at least once a month
  • Parents were expected to welcome our staff into their homes so skills generalized
  • Parents were encouraged to provide at least a positive basic nutritional program when their son or daughter came home (At Kaplan we removed all additives, preservatives, artificial sweeteners & provided fresh organic vegetables, fruits, meats & fish). This was unheard back then
  • We also used Dr. Bernard Rimland’s formula (B6/Magnesium)

Kaplan Curriculums that worked

The Kaplan Foundation Story

My staff were young & inexperienced but open & passionate. For the first 3 months I worked all shifts (7 to 3, 3 to 11 & 11 to 7) ensuring the safety of my students & the positive development of my staff.

Toilet training, sleeping through the night, brushing teeth, bathing, dressing, using utensils to eat, exercising, community access, communication & music were addressed during the first 3 to 6 months.

One year later we purchased a 5 acre site with a large ranch-style home, barn, stables & a swimming pool in Orangevale ,California & moved back to Sacramento to be closer to the University, a larger employee base & to expand the program. The new site could support 8 students and we went to work immediately converting the barn & staples to fully operational classrooms & added day students from the local public school systems.

We hired additional team members (Teachers, Speech Therapist, & Art Therapist, Swim Instructor, office support & an amazing nutritionist / Bio Medical Practitioner). A step by step training program was developed to prepare the team to work collaboratively together. The school grew to 4 homes & a main school site.

Children were taught to complete a wide variety of self-help & hygiene tasks, meal preparation, independent living tasks, such as laundry, sweeping making their beds, making a salad, smoothies, sandwich, loading a dishwasher, etc. They were also taken into the community & taught how to access parks, museums, movies, restaurants, fairs, sport events, bowling alleys & much more on a regular basis. Their school day consisted of exercising (skating, running, swimming, basketball & trampoline) as well as learning social skills, communication skills and academic skills.

The families were required to visit & learn how to work with their son or daughter to prepare them for the times their children came for home visits. In the early years the regional center allowed me to send staff home with families to help generalize skills into their own homes. Families were required to call weekly, send some sort of written communication to their son or daughter in the mail and have their son or daughter home for special holidays (Xmas, Thanksgiving etc.)

Each year the Kaplan Foundation hosted all the families from all over the state & out of state for a family picnic right after participating in Special Olympic Games at Sacramento State University.

I directed the Kaplan Foundation for 20 years.

So many lessons, I learned in hiring the right team, supporting families, training & supporting the team & families, developing relationships with districts, state agencies, universities & similar schools, integrating into communities, keeping on top of research & strategies & finding balance between student needs, parent expectations and available resources.

 

My First School Site

After the incident with David (see previous posting) I was ready to pursue my dream.

My father told me that I could do anything as long as I obtained the knowledge (what a great wizard he was) & never be afraid to ask.

He helped me imagine, as a young adult, the possibilities of creating a school site, as we drove through the streets of San Francisco (see previous posting)

He gave me the financial support to open that first school & help me meet my first payroll….. California Regional Centers & Public School Districts paid 45 days after services were provided. Funds were needed to pay staff and run a home & school

My family, parents, aunts & uncles as well as friends went through their homes and donated furniture, kitchen equipment, linens etc. etc.

Most people tried to talk me out of starting a residential school for children with autism but my husband at the time believed & my father believed & most of all I believed it was time to do what I had dreamed since I was 11 years old.

I met with the Regional Center in the area of our site & educated myself in applying for a special license to open up the residential side of the school. There are 21 Regional Centers in California (http://www.dds.ca.gov/RC/RCList.cfm)   I went through a vending process with the Regional Center and then a certification process with the State Department of Developmental Services (http://www.dds.ca.gov/) to become certified to provide programing for Level 4H (these were children with autism).

I researched how to obtain a certification for a private school license & then how to obtain a certification (http://www.cde.ca.gov to support Kindergarten through 12th grade level children with severe disabilities. Autism was in this category.

The processes were detailed orientated requiring development of job descriptions, curriculums, training models, human resource systems, schedules, techniques, strategies, billing systems, data systems etc. etc.

I submitted all paper work & waited. In the meantime I worked with an attorney friend who helped me file for non-profit status for my dream the Kaplan Foundation. A school that would honor my father’s belief in me & my passion & commitment.

I was grateful that my husband was in agreement to sell our home, purchase another one in Placer County & a second one in Placerville for the school & emotionally support this next trek on the Yellow Brick Road.

We opened our doors serving 5 girls (unheard of) on the spectrum & one boy. Three of the girls were 5 years old and two 11. The boy was also 5 years old. They came from Lake Tahoe, Reno Nevada, and Contra Costa County & Sacramento.

I was now in charge of the lives of these complex children from the moment they arose to the moment they fell asleep at night.