On the Road With Autism

My journey of discovery. I welcome your comments!



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

 

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

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.

 

 

 

 

 

 

 

 

Jakarta Seminar Continues; More Questions

My son is 6. We do not know what his talents are? What can we do it develop his talents

I asked them what they would do if he were not a child with autism & they could not say. So, I urged them to expose him to all kinds of activities & opportunities they are able. Take him for walks. Take him to the park. Take him to music & dance events. Sing with him & dance with him. Take him to the market. Ride a train with him. Take him on your bike & teach him to ride a cycle. Draw with him, paint with him & most of all play with him (board games, ball games, blocks & Legos. Read to him, read with him and encourage him to turn the pages & point to and name the pictures). Try musical instruments with him.

Get him involved in sports (soccer, badminton perhaps running or swimming). If he likes the computer find out what he likes to watch. Perhaps those characters can be used to teach him. Perhaps operating computers can be expanding.

I urged them to watch what he goes towards. Join him in his play & what he is curious about. Expand what you see him go towards.

My son will only eat dry foods. How can we expand his food preferences?

Perhaps it might be wise to work with an Occupational Therapist on sensory integration. Frequently our children avoid foods because of their texture or smell. He may need some sensory work with the OT or some oral motor work with the Occupational Therapist. Start this as early as you can

The longer you only feed your son one type of food the harder it will be to change. They get in a routine. They get stuck.

Cook with your son. Get him use to smells. Shop at the markets with him so he can see the variety.

Try having him eat in quiet & calm places.

Start small. You may have one or two of the foods he enjoys at the table.   You would then have one food that he avoids (fruit) Cut the fruit into very, very small pieces at first.   Tell him he must try one bit of the less preferred food before he can have one bit of the preferred food. You may have to be patient and wait him out. You may have to encourage him. You may need to tell him that you want him to be healthy & grow big like his father or brother. You might have a doctor or dentist tell him that he must eat better to have strong teeth & good health.

Once you have gotten him to try one bite then give him the preferred. Keep trying one bite of less preferred & then one bite of preferred. You can make items bigger as you go along or require him to try 2 or 3 bites of less preferred before getting preferred item.

Each child is different. Be patient. Keep trying.

 

We have heard that genetics is part of the cause of Autism. We have also heard that our environment affects the outcomes. What can we do?

It is advised to follow the research being done at some of the greatest medical research foundations. Today the field of experts is saying that it is not just one gene, like Down syndrome but a mixture of genes coming together. There is no test as yet, like Down syndrome to prepare you for having a child. More money each day is being allotted for research as the numbers of children increase at such rapid rates. Support research.

There are researchers who believe there is a combination between genes & the environment.

We must take care of ourselves & the world we live in. Our waters need to be cleaned from toxins. Our food needs to be grown without toxins. Our businesses need to stop producing chemicals that affect our physical bodies.

We need to look back into our biological histories before we inoculate to check for susceptibilities. We need to find doctors who can support a slower process to give our vaccines to our children when their brains are rapidly developing. Perhaps being more conservative with inoculations. There are some children who received 6 or 7 vaccinations on one day & had cellular challenges to begin with who developed Autism. Perhaps we will come up with some tests that can be given at birth to determine if a particular child has a healthy immune system to take on the vaccination or not.

We must feed ourselves properly before we get pregnant and throughout pregnancy. We must feed our children correctly, especially their brains so they can learn.

Questions & Answers In Jakarta

Ibu Karen, won’t a communication device stop my son from learning to be verbal? Asked a father of a 6 year old.

In my experience, a device provides the opportunity for our children to express themselves, now & that is important to reduce frustration, increase connecting & checking for understanding. I have seen a device calm the child & reduce anxiety so that if they are going to be able to use verbal language they can learn more easily. I have seen the visual picture on the device help them articulate the words. I have seen where typical mothers teach their son or daughter’s sign language when they are very little & it never stops them from verbalizing, only provides earlier communication opportunities. Finally, if a child has apraxia, verbal language will be very difficult to learn so a communication device may be the only answer for the most positive future outcomes.

My child only leads me by the arm to show me what he wants. Sometimes I am unsure of what he is asking. How can I expand his communication?

How wonderful he has learned to guide you towards his need & want. Make sure to acknowledge his communication intention. Say,” thank you for showing me that you want (book, drink, food or walk)”. Then take his finger & place it on or close to the item you think he wants. Again, say, “Oh you want milk, water, apple, toilet, toy). Do this for many weeks. Then when he guides your hand towards something, without pointing, tell him you are not sure what he wants. Ask him to point & show him how to point. Then help him point.

If your child is only looking at items, it is important to acknowledge that they are looking towards an item & then shape it to a point.

You could take pictures of the real items your child seems to want. Cover them with plastic paper for protection. Put them on the table. Teach him to point to the pictures when you say their names. Teach him to take the picture & place it on the item, like a game of matching. When he can match it, then you can use the picture instead of the pointing. Put the pictures he can match on a board or table & when he is trying to communicate ask he to choose the picture he wants. He will learn that if he gives you a picture of desired object or activity you will respond.

You can also use the pictures to play a naming game. What is this? Have him say first sound of picture or whole word. Have him match it to the real object too.

These are all ways to increase communication from a gesture

My son only counts to ten. How can I expand his math?

I asked can their son give them ten items if they ask. They say no, he just counts in order. I let them know it is more valuable if he can give you quantity of items. It is better if he can give you two bananas at the market or three eggs or 10 stones from the pile of rocks.   Then he understands what a number is & will be able to add & subtract when he understands quantity.

So, when he is helping to set the table have him count how many in the family & tell you how many plates, or forks or napkins you will need. When you are at the market have him get a certain number of items & put them in the bag for you. When he wants cookies, chips or fruit, ask him how many he wants & count them out to him. Use every opportunity to have him give you amounts.

Then write each number 1 through 5 first on a separate piece of paper. Have him draw one item under the number one, two items under the number two & so on. You can do this up to ten. You could also play a matching game. Have many items on a table. Have him put 1, 2, 3 etc. items on the correct written number.

Once he understands quantity you can add & subtract with him.   Mommy has two apples. She gives one to Daddy. How many does mom have left? Mommy puts five dirty shirts in the wash, how many are still in the basket?

The teacher says my son is touching himself & others in school. What can they do?

First everyone must be able to say “No or stop touching to your son” when he is in public. Let him know this is not appropriate & does not make people happy or comfortable. He must understand that it does not make teachers happy, or friends happy or family members. He must learn that if he wants to please he must learn the expected behavior.

Teachers must teach the concepts (Private & Public) to him. You can do this by using pictures to tell him a story about the right way to touch people.

You teach that when he is in private places, like his bedroom or bathroom he can touch himself. He may not touch himself in community places in the home, in the community or in the school. People will look at him & be unhappy & move away. His teachers will be disappointed. His parents will be disappointed. His friends will be uncomfortable & so he will not have friends or family around him.

He must understand the consequences of his behavior.   Then you can give him behaviors to replace them.

You can tell him he may shake their hands, dance with them or clap hands with them (give a high 5) . If he wants to do something with them, he must ask permission.

If he doesn’t follow the rules, he must leave the area & perhaps sit alone for a while to think about having kind hands. He must know that when he uses kind hands he can be around teachers, family & friends.

One of our parents wants to place their autistic son in a school where English is only spoken. The child does not speak English & only knows a little Bahasa at this time. Is it good for the child to go to an only English speaking school?

I asked what language the family spoke in the home. They said Bahasa. I wondered why they wanted their son to go to the International school but the teacher did not know. It is hard to give advice when I do not have all pieces of the story, but here is what I offered.

Research says that our children first hear communication when they are in the womb at around the 7th month. They hear the language spoken by the mother & family. This prepares them to listen to the sounds & acquire speech when they are born. Our children with Autism already have difficulty processing sounds they hear. Learning their home language first would be important as they have heard this for a longer time & the words are used more frequently in the home & they can practice more.

The child shouldn’t have to try to learn two different languages at the same time. This can be difficult & challenging. Once the child learns Bahasa then perhaps a second language. Just like typical children. They learn first their native language then another.

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.

The Van Ride from Bogor to Jakarta

Pak Mus picked us up at the house the families had provided for our stay while presenting on the island. The house had served us well, including a night we shared with families & professionals of breaking the daily Ramadan fast with a beautiful buffet of Indonesian foods.

Pak put our bags in the back of the van & introduced us to the driver & his son with Autism. Pak asked if I would please speak to his friend’s son, who was anxious about going away to college at the end of summer.

The young man returned my greeting but his attention was focused on the book he was truly engaged in. I didn’t see a way to engage him this sensitive discussion around his fears of leaving his home, his town, his family & all his comfortable routines & immersing himself in a program so far away from all that was familiar to him.

So, I asked his Dad a series of questions & got out my trusty tablet to once again write down suggestions.

Has your son visited the campus? No,       Has he seen where he will live? No

Does he know where his classes are? No     Does he know how to get the books he will need? No

Does he know where he will eat or shop? No

Is there someone at the school who will mentor or act as advisor on the campus? No

Does he know where to go for medical issues? No Have you planned a way to communicate with him on a regular basis? No

I could see that no planning had been thought about to prepare this young man with autism to integrate;

I wrote up the following plan as fast as I could, given that I could see the airport in sight

  1. Schedule several visits to the campus mapping out all key locations for his everyday living & school needs (cafeteria, library, grocery store, book store, medical etc.)
  2. Contact a counselor at the school & set up a visit for his son to meet the counselor to set up an advisor relationship plan
  3. Obtain a computer & set up skype & email so that family can connect on a regular basis
  4. Make sure he had a cell phone with appropriate numbers saved for a variety of needs
  5. Teach him how to use his cell phone as a timer to get to classes on time
  6. Find out where he would be living, visit his living space with him & set up a plan on how it will be furnished for him. Find out where he will be able to wash his clothing.
  7. Make a list with him of clothing, bedding & hygiene items he will need to take
  8. Locate a doctor close by the campus or facilities on campus for him to go to if he is sick or injured & take him to the office so he knows how to find it
  9. See if you can meet with any of his first year teachers to let them know some of the learning supports he will need
  10. Plan to visit him weekly at first to ensure a successful transition & put those visits in his calendar & on his cell phone to remind him
  11. Check in with him each evening before bed to make sure he knows you love him and will see him soon

Pak thanked me, wished us safe travel & hoped we would return soon.

And Then Came the Island of Java

And Then Came the Island of Java

Talk about organic connections. On the very first trip to Bali, a friend of mine asked if I would bring some gifts to a friend of hers. The gentleman was delighted but wanted to introduce me to a couple who had started a center on the island of Java in the city of Bogor. Not a center for special needs but a center for children who had not received an opportunity to obtain an education.

I had a lovely dinner with his friends at their beautiful home in Bali & we exchanged stories about our lives opening schools. Gesine asked if I would fly with her to Bogor & speak to the children & teachers at her center. I was confused as I wasn’t sure I had anything to offer a typical school. She convinced me that her students & teachers could learn from me & what my life had been about.

So, I hopped on a plane the next week with her & landed in Jakarta, we traveled by bus to Bogor & stayed in this very charming Colonial home. Gesine arranged for me to speak at an international school assembly offering to connect to anyone interested in learning about Autism while I was on the island.

A woman came up to me & asked if I would come meet a friend of hers who had just opened a center for children with Autism. I hopped into her van with Gesine & off we went. An amazing man had offered space next to his diving school to parents who wanted to start a program. He had already offered teaching kiddos on the spectrum to snorkel & dive. I toured their site, listened to their questions & shared some ideas in response. The entire team then joined our gathering a few days later with 20 others interested in learning about autism.

We held the Autism Awareness gathering at Gesine’s Center. A center that was teaching students English, Guitar, Sewing, Computers, Public Speaking and a wide variety of academics so they could develop as leaders & also pass their written exams for high school. This center was helping students get into college & obtain jobs. I had engaged with the students the first day for a meet & greet. They asked questions & responded. Later I met with the teachers to talk about how they could develop the very best teaching qualities.

The Autism gathering introduced me to families who had started a couple of Autism centers in Bogor & set into motion the next trips to Bogor to help bring knowledge. The following year I presented information on how to build capacity to support Autism in their centers & on how to address students’ hygiene and body changes as they mature; topics they asked me to address.

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.

 

Komang & Superman

Komang & Superman

During my web site research into Autism & Bali, I received an email from a young man, who had a life changing desire to open some type of center for children with autism in his own village. He had no formal training & no idea where to begin. We agreed to meet while I was in Bali & see what would happen. Wyane picked me up at my Bungalows & we drove for almost an hour to his village. My youngest son accompanied me, as I had no idea where we were going & who this young man with an interest in Autism was.

We arrived at his home, now being converted into a center (a large room being added onto his small two bedroom home). I was greeted by his smiling wife & their two young children. There was a large gravel rock pile in the courtyard & a bike. The home had a very small kitchen area, a space with a book shelf and two small rooms for sleeping.

A mom from the village showed up with her 11 year old son Komang. He was very handsome but his eyes did not meet mine & he had no greetings for anyone. He walked straight into the home, headed to the book shelves & started pulling each book off the shelf with no interest in their content. I couldn’t help myself, so I started to engage. As he removed a book, I returned it. Still no eye contact. He removed them faster, I returned them faster. Still no eye gaze or acknowledgment of my intrusion. He stopped.

He started to build with some blocks, the old ABC colored blocks my sons had as children. I waited for him to complete a major part of his construction & then I intruded, taking away blocks so he could not finish. Eye Contact!!!! I started handing him one block at a time after each eye gaze made in my direction. I then picked up a toy airplane & made those airplane kind of noises. He laughed. Connection!!! He then picked up a Superman doll Figure & I chimed in “Super Man” & sang the song I remembered from the film. He was hooked!!! All away across the world from California & Superman connects a strange woman to an 11 year old child with autism on the island of Bali.

I followed Komang outside as he made superman fly. By that time a couple children from the village had joined us & I decided to use the rock pile for a group play activity to see if I could get Komang engaged with others. I had some toy cups, a bucket, a small shovel & kids. I started having the other children fill up cups and make piles & roads with the rocks. Komang came over but with no regard for the others. He step on the pile & began sifting through the rocks. I helped him off & tried to expand his play to filling buckets using the cups & rocks. He wanted nothing to do with this but wanted to continue his repetitive dropping of the rocks on the pile. I kept re-directing until finally he sat down next to the others and scooped rocks into the bucket. Parallel Play!!!

All this time Wyane was observing my interactions and he immediately joined the kids & the rocks & continued to interact with Komang. We used the Superman toy, as well, to fly over the pile & land safely on the rock formations. Komang smiled a superman kind of smile.

Wyane drove us back to the bungalows & thanked me. We hoped to connect the next time I was on the island.

Making The First Connections

Making the first Connections:

It happened organically that I would have the privilege to connect, learn & share my experience & knowledge on special needs on the beautiful island of Bali & later on Java, some say Jakarta, Indonesia.

“Heh, Karen why don’t you come with us tonight & hear about a group here in Marin helping children go to school in Bali”. I became a member of Heidi’s Circle & helped support an elementary age girl attend school. Two years later I was planning a trip to Bali to enjoy the island & meet Komang & her family.

I did some research on the nonprofit scholarship program I had joined. They were part of a larger nonprofit organization that provided services for the elderly, made prosthetics & provided therapy for adults & children with physical challenges. BINGO!

I sent an email to the program known as YPK http://ypkbali.org/ , who helped children with physical challenges & attached my resume. I requested an opportunity to visit their program to connect & learn. My communication was met with an open & welcoming invitation to visit but also a request to interact & share with the faculty. That was it. The door opened & has stayed open for the past 5 years.

The children of YPK came to the center to receive physical & occupational therapy. While they were there they also spent time engaged in educational opportunities that many were denied in public schools on the island due to their challenges.

A team of young, passionate, caring young ladies developed lessons & engaged the children in activities to expand their communication & knowledge. These passionate young woman were learning on the go about how to support children with special needs. They were supervised by a director who believed every child had the ability to learn & should be provided an opportunity to develop in a safe & caring environment.

My first trip to YPK was about observing, listening & sharing knowledge. The teachers wanted to know how to implement an activity where more than one child could participate. I asked them if they had any musical instruments. They grabbed 7 bamboo shakers, we formed a circle & I modeled ways they could teach concepts to a group with these shakers. We played follow the leader. We counted shakes. We shook the shakers fast/slow, high/low & to the right/left. We went around the circle & named animals, transportation, foods to the beat of the shakers.

The children were challenged by ADHD, Autism, Cerebral Palsy & other cognitive plus physical challenges. Their ages ranged from 5 to 13 as well, but they all participated, some with help others without.

The second question the team asked “What is Autism?” I spent a few hours with them sharing characteristics & research on autism & answering their questions.

I returned each year developing workshops around their interests, their questions so their knowledge could expand. Two years ago we expanded our small team of learners to include 8 centers on the island coming together to connect, share and learn. We are now a group of 40 plus. Check out www.globalofferings.org

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.

 

 

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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