On the Road With Autism

My journey of discovery. I welcome your comments!

It was 1978, I had just returned from a 16 week maternity leave after setting up the first elementary autism public school program in Sacramento Unified School District three years previously. I had trained a young lady to take over my position while on leave & when I returned would soon be starting the high school program for the district & she would continue at the elementary school.

We had been told that due to Proposition 13, there would be no summer programs for our children with autism. All I could think of, back then, was all the work we had done to get our students functioning at the current level & now skills would be lost & families devastated, scrambling to find some way to keep their sons & daughters in a safe environment for summer.

I guess it started then, my “Well I will just start my own program” attitude. I contacted my rabbi friend at Temple B’nai Israel. He had space he was willing to provide me & also donated insurance to cover the program. I was willing to work for free as well as my co-teacher & so we let the families know that we would provide a 4 week summer program at no cost to them. The only thing they had to do was get their son or daughter to the program. We held our first week of program with great success with 6 students.

I don’t remember how Michael McBride from the Sacramento Union Newspaper found out, but we were all over the July 17, 1978 paper, “Prop. 13 doesn’t stop them”.   The reporter also contacted Sacramento Unified School District to get their take on our solution to their problem & the district contacted me immediately. The Director of Special Education asked that I bring the program back into the district. The remainder of the summer session was held on our school sites & our students continued to flourish.

By the way, my “I will just start my own school” actually started when I was in college and my father would drive me through the streets of San Francisco, on school recesses, asking me if I thought certain buildings we would pass by, would make a good school location. He encourage me to dream, to think anything was possible. He believed in me.

Sacramento Unified School Programs

Clayton B Wire Elementary School laid the foundation for my thinking that anything was possible if you have courage to risk, a heart of compassion & acquire the brains (knowledge) you need to create effective programing.

The District saw my potential & believed it could now support children with Autism at the middle school & high school level so we worked together & those programs were developed.

I moved from the elementary site to open the High School Program at Luther Burbank High School in South Sacramento.

My classroom was positioned way out in the back of the school in a portable but it didn’t stop me from finding ways of integrating my students. My classroom had a rather mixed student body some with Autism, a couple with cognitive challenges & still others with more social/emotional needs.

I learned the following very, very quickly:

  • Make friends with the Cafeteria staff & identify volunteer activities
  • Make friends with the Home Economics Teacher & identify times during the week to use the kitchen
  • Connect with the counselors & develop a student volunteer program. High School students need volunteer hours
  • Never give up on teaching a student academics. One of my students learned to read at 16
  • When a student says they can’t do something because they have a disability, realize if they have the ability to say that, they have the ability to do what they say they can’t. Expect them to do it & find a way to support the challenges
  • Do not stop trying because an idea failed. Find another way
  • Attend all teacher meetings & develop relationships with regular teachers. Help them understand & believe in your students’ potential, so you can mainstream with success
  • When your students are integrated check on them consistently
  • Reach out & connect to all families
  • It’s okay to allow a student to stand at the window & watch the clouds move by

David’s Story: This was the clincher to knowing it was time to start my own school.I was teaching out in the famous portables, where they housed special day programs. I had just allowed David, a non-verbal teen with Autism to walk on his own to the bathroom (within my sight from my classroom). We had been practicing for several months. I watched him enter, turned to answer a question from another student & realized he hadn’t come out. I remembered that David was always distracted during the toileting process & gave him a few more minutes. But David still did not return.

My instructional assistant took over. I stood outside the bathroom calling David. No response. I went in. David stood by the sink, trying to wipe off his bleeding lip, trembling. I noticed he had a bruise above his eyebrow. A student must have come into the bathroom during those very few minutes David was taking responsibility for himself & punched him in the face.

Someone had intentionally hurt this young boy, who could not identify his assaulter.

I escorted David back to class, applied first aide. David clamed & enjoyed his most liked activity, watching the clouds pass by in the sky. I dialed the 7 numbers of his Mom’s phone. My stomach was churning.

“Hope, that was his mom’s name, “David is okay but there was an incident. I am so sorry. David has a bruise on lip & eyebrow. He was in the bathroom & I think he was assaulted. I am sorry.” “That’s okay, accidents happen”, Hope said

I could not believe her response. It was NOT okay. Accidents like that should NOT happen. Encouraging mainstreaming too fast & encouraging mainstreaming for all should not be the only objective .

There has to be other choices for these children, I thought to myself. There has to be more than a public school or the state hospital.

Thus, the next step along the road of Autism was revealed, I founded The Kaplan Foundation, a private school for children with Autism …. My first attempt to provide a safe, nurturing educational environment for students to learn.

Mary’s Story

Well, finally the yellow bus arrived at the school door & I approached the opening doors knowing that I needed to make my first move towards changing a critical behavior of one of my students.

I had met Mary at Napa State Hospital a few months earlier. Her attendants greeted me at the hospital entrance advising me to keep my distance & to be on alert for Mary’s loud noises and perhaps aggressive behaviors.

Mary was nearly my size, well 5’2” isn’t very large anyway, slight of build & kept a large rag in her mouth affecting her ability to communicate & destroying her dental structure.

I walked down the sterile corridor of Napa State Hospital & was introduced to Mary. I extended my hand & asked Mary to show me her room. She took hold & led me directly to her room. I noticed the attendants’ eyes & mouths hanging wide open.

But now, waiting for her to exit the school bus, I had to ask her to remove that RAG so we could work on communication & dental hygiene & so she would not have to deal with the glares & words from the typical children on our site. Would she scream, bite me & elope?

Mary stood on the top step & I again extended my hand, this time to lead her to her new classroom. “Mary it’s great to see you, welcome to your new school. Come Let me show you where your classroom is & by the way, no rags at school. Please give it to me”…that’s what I said in one long deep breath.

Mary took that bunched up, dirty, slimy torn rag out her mouth that day, handed it to me and never used it again.

Yep, a little bit of “Courage” like the cowardly lion went along way for me that day & for Mary.

I lived many wonderful stories at my first public school program: Snow day with kiddos on the spectrum in Sacramento, Grabbing Mary’s bra out of the toilet during a program to teach her that young girls wear bras, Learning to play the auto-harp because my kiddos loved to sing, holding monthly parent meetings after school hours to help them understand their son or daughter & teaching my kids to climb ropes, exercise &  close their eyes & take deep breaths to calm.

I also learned the following:

  • Get parents involved soon & continually. Hold monthly parent meetings during at least the first year of the program & send daily notes home to keep families up to date on progress
  • Make friends with the maintenance department
  • Connect with the two highest grade level teachers on your site & offer to teach students sign/language or something you are good at & all about autism exchange for peer buddies
  • Offer to explain Autism to all regular education teachers on site at teacher meetings
  • Develop a typical buddy system
  • Make really good friends with the students’ bus driver
  • Don’t be afraid to ask for everything needed to implement an effective program of your supervisor
  • Connect with local university teaching programs & offer to be a guest lecturer and offer internships in your classroom
  • Celebrate & value all your staff
  • Make the Director of Education in the district your professional friend

Reach Me Teach Me

My first  teaching sight was an elementary school K through 6th grade. I was the first classroom for students with Autism. My students’ ages were 6 to 16. Some had been at home, some in Napa State Hospital and others in multi-handicapped classrooms failing.

No materials, no instructional aid support & thank goodness NO students the first day of school. Yep, there was a glitch in transportation that day. Another day was given to me to prepare.

The district had assigned a Speech Therapist to my classroom who had never worked with children on the spectrum & an aide who also knew almost nothing about Autism but who was musical. He turned out to be the best assistant ever, connecting easily with my students & always opened to learning & creating.

I also lucked out with the Speech Therapist assigned to my classroom & together she & I implemented an amazing communication curriculum for several years.  She & I worked together for 10 plus years, so even after I moved on from Sacramento Unified School District.

Reach Me Teach Me http://www.amazon.com/Reach-teach-autistic-handbook-administrators/dp/087879171X laid the Foundation for my first classroom. Stations set up for art, music & social group & communication. Tables arranged for paired learning & snack time. A sink for teaching washing hands was right in the classroom, a bathroom close by provided space for teaching toileting skills & a cafeteria to teach my students how to obtain their food & eat appropriately. Our students had a set recess time, were invited to attend assemblies & our speech therapist pushed in until she felt comfortable with each student.

I assessed all my students in all developmental learning levels & wrote goals & objectives to build skills. I recruited 5th and 6th graders to act as peer buddies in my classroom & on the playground. In return I taught sign language in their typical classrooms after my students left for the day.

One of my favorite moments was at Back To School Night when all my peer buddies’ families came to my classroom to thank me for providing their sons & daughters with this amazing opportunity.

Another favorite moments occurred when I was able to integrate Grandpa Banks, a foster grandparent, into my classroom & provide my students with a special man to connect & develop a safe & caring relationship.

I learned how connecting music was for my students, how total communication (signing & talking) could expand communication expression & comprehension & how important it was to teach my students to make choices, learn self-help skills and learn calming strategies. I introduced relaxation strategies to my students very early in the school year.



An important interruption

As I am just getting use to telling my story, blog style, please forgive me for this little blip in the story.

Yep, I left out an important part of my life that led me to the road of autism

At 11 years old, my mom took me to see the movie “The Miracle Worker” http://www.imdb.com/title/tt0056241/ It was 1962. I was born in 1951. The film stared Anne Bancroft and Patty Duke.  Patty Duke played Hellen Keller and Anne Bancroft played Annie Sullivan, her teacher.

There was a scene in the movie where Annie is trying to teach Hellen to eat at the table with her family, instead of circling the table grabbing food off people’s plates & stuffing food into to her mouth. Annie asked that the family leave the room since they would not stop providing Helen the opportunity to eat off their plates. They left. After forks flew, food flew and plates crashed on the floor, Helen screamed and Annie looked pretty disheveled, Annie was able to get Helen to sit & eat one bite of food with a fork.

That scene & the final scene in this movie, where Helen finally understands that the words Annie has been spelling in her hand actual mean something. W- A- T- E- R meant the water coming out of the water pump, I was sure that I wanted to be a teacher just like Annie Sullivan.

I wanted to help children learn to communicate.

My dream got even clearer when I became the baby sitter for two deaf-mute children living across the street from me in San Francisco at age 13. Barry and Susan were two young children who had a speech therapist coming to their home weekly to help them learn to communicate. Their mother allowed me to sit in on their therapy sessions. I now had the field of study & the job title that would help me find the correct college program to enroll in to help me obtain the correct credentials to help children communicate.

I lost contact with Barry and Susan after high school but learned later they had completed their own high school diploma & were attending San Mateo Junior College.

It seems my life was destined from the very beginning to be involved with children and their families with special needs.   I remember my mom telling me that my first words “How come, why?” It seems that even when I was two, I was getting ready to ask the questions and figure out solutions.

So, first I asked,” How, come why”? & then got inspired by Annie Sullivan & finally met two children that would open the door to my preparation for the Road to Autism.

Work Begins

At the time of my graduation, children with Autism were not allowed in public schools, so my first position was with Hayward Unified School District & I was assigned to several schools to support speech therapy needs of students, none of which were children with Autism. To sustain my interest I connected with special education teachers & asked them if I could help them by pushing into their classrooms to develop communication skills with their studets.

By the end of my first year I had located a private school providing educational services for children with autism, interviewed and signed on the next school year. I began my new position as Speech Therapist for Morgan Center www.morgancenter.org and left public school speech therapy forever.

Today Morgan Center is a thriving school in Santa Clara County supporting the needs of youth and adults with Autism. The center provided me with an opportunity to at least work with the children I desired but I was still unable to test out my own curriculum ideas. I was however grateful to be working collaboratively with others who were truly committed to the field of Autism.

 The Morgan Center confirmed my opinion that collaboration between disciplines (Education, Speech Pathology, Occupational therapy) were absolutely necessary to address the complex learning challenges of children with Autism. It also taught me that it was key to involve the families. At that time I was NOT allowed to work with families whose children attended the center. I could not understand how I was going to be effective if the families were not engaged in developing communication skills with their son or daughter in the home as well. I was frustrated.

I just happened to get engaged to be married as the school year was ending at Morgan Center & my husband to be was located in the Sacramento area. It also was synchronistic that the Individual Disability Education Act was passed and that all public schools were now mandated to provide a free & public education for all children.

I was on the road again, this time to Sacramento. Sacramento Unified School District www.scusd.edu was establishing the first public school program in the area and had offered me a position as the classroom teacher. Finally an opportunity to put Reach Me Teach Me, my own research in place.

I was married the last weekend in August and opened the 1st public school classroom door the day after Labor Day….Wow!

For those of you who wonder how it is that I came to the Road of Autism, I share with you the story of Rusty.

I was a graduate student at Arizona State University www.asu.edu in the Speech Pathology & Audiology Department. Rusty, accompanied by his mom, came to the speech clinic where I was completing my 500 clinical hours. Rusty was the first child with autism I had ever met.

My professors had no idea what that truly meant in 1970, but as a curious graduate student, I wanted to know all about Rusty & this thing called Autism. So, I began weekly session working with Rusty on developing his receptive & expressive communication skills & began my research on Autism.

Rusty’s mom was extremely helpful in helping me understand her son & together we started the first parent chapter of the Autism Society of America www.autism-society.org. Rusty inspired my curosity and led me to find other children with autism to connect to. I volunteered in special needs centers to get a better feeling for these very interesting kiddos.

My own parents encouraged me to learn all I could about autism. I searched for knowledgeable mentors & found Dr. Bernard Rimland www.autism.com/aboutrimland the founder of the National Autism Society. Dr. Rimland lived & practiced in San Diego. He had a son with ASD. He encouraged me to read & also attend the National Autism Conferences http://www.autism-society.org/get-involved/conference/ . I followed his suggestions & started reading & attending conferences while still in graduate school. When I opened my first school Dr. Rimland sat on my advisory board of directors.

 The following books provided my brain with its first pieces of knowledge

A Child Called Noah by Josh Greenfield http://www.goodreads.com/book/show/60751.A_Child_Called_Noah

Autism Spectrum by Lorna Wing   www.goodreads.com/author/show/473642

Journal of Clinical Psychiatry, Authors Dr. Edward Ornitz and Dr. Edward Ritvo

The Ultimate Stranger by Dr. Carl Delcato   http://books.google.com/books/about/The_ultimate_stranger.html?id=-rosAAAAMAAJ

The Wild Boy of Aveyron http://www.amazon.com/Wild-Aveyron-Ph-D-Harlan-Lane/dp/0674952820

The TEACCH Model by Dr. Eric Schopler http://teacch.com/

I graduated from ASU in 1972 with my Master Degree in Speech Pathology and a minor in Special Education. I had spent time volunteering in schools, hospitals, clinics &  centers for children with special needs during my college years.

My Master Degree project was a Curriculum I designed on how I would develop a public school program for children with autism, Reach Me Teach Me http://www.amazon.com/Reach-teach-autistic-handbook-administrators/dp/087879171X

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Getting To Know Me

One of my favorite movies, as a child, was The Wizard of Oz. I had always imagined myself wearing those Ruby Red Shoes & following the Yellow Brick Road to my heart’s desire.

“Follow the Yellow Brick Road, Follow the Yellow Brick Road,” said Glenda, the good witch & the Munchkins, in the Land of OZ. To Dorothy. “Perhaps the Great Wizard of Oz can help you find your way back home”

And so Dorothy followed the road making several stops along the way experiencing challenges, gathering advice, wisdoms & making long lasting friendships & happy memories.

I saw my 40 year journey with Autism as an adventure of connecting to amazing, interesting & different people in many lands as Dorothy did. The adventure has had its scary times, exciting times and for sure it’s soul searching times, just like Dorothy’s journey.

On my own road of Autism I have learned much, accomplished much and gathered much insight. I thought it was time to just share this journey with you &  through stories of the children, their families, my mentors & the school teams I have met along the way, provide some insights.

I hope to show you how I used my brain, my heart and my courage as each opportunity presented itself just like the Scarecrow, Tin Man and the Cowardly Lion did along their journey with Dorothy.

Degrees, credentials and research were part of the journey (see background at www.karenkaplanasd.com). Working in private schools, public schools and teaching at the University level added another dimension to my growth & understanding. Imagining, developing & founding & losing my own residential school after 20 years brought an entirely different meaning to my life with Autism. Volunteering for the State Department of Education, serving on Non-profit boards and presenting at conferences, seminars & workshops offered meaningfu opportunities to learn & collaborate. Evaluation & development of existing schools added depth to my knowledge of working with committed teams in my field as well as mentoring others. My path took another turn when I founded a small nonprofit, Offerings (www.globalofferings.org) with the vision of bringing not only knowledge locally but collaboration globally in Autism and other special needs.

Come along on my road, perhaps it will help you along yours.

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