On the Road With Autism

My journey of discovery. I welcome your comments!



SAD, CONCERNED ABOUT the EDUCATION for Students with AUTISM

I am having a hard time understanding why we are not doing a better job at educating and preparing children with Autism when we understand more about how these children learn than ever before, have more support curriculums and choices of interventions than ever before.

Why is it so hard for the education field to design & implement school programs for children with Autism? Why are these children still suspended from schools, parents forced to stop work so they can pick their son or daughter up at school when things aren’t going well or sent to private schools outside their districts so that families feel the lack of belonging in their own communities? Why are private schools not able to offer a full variety of educational practices? Why are these children also leaving the schools unprepared for their next steps?

We have Universities who have created credential programs that say they address Autism. The Occupational Therapy Departments are talking about Autism. The Speech & Language Departments are talking about Autism & of course the psychology departments are invested in Autism. We have created a huge industry of BCBA personnel who say they can support families and schools. The bookshelves are lined with information, workshops are presented all over the state of California & out of state. Autism Speaks has made it National Known that 1 in 68 children are born with Autism.

Ted talks hit the social media across the world on Autism. Movies have been released on autism. Plays are presented on Autism. Every newspaper imaginable has posted an article on autism.

What is it? Why is it that I still get calls from desperate parents, crying? Why is it I still walk into classrooms & see a stapled pile of dittos being placed in front of these students as the only intervention for learning math, language arts, science or history & the teachers wondering what they can do to keep them engaged? How can a student get sent to a private school at the cost of $60,000 to $80,000 a year & still not be prepared for the next step?

Why does it have to cost so much money to figure out how to help our students communicate, take care of their daily needs, learn to their potential, find a way to develop friends and gain control over their sensory & feeling differences?

Are we spending more money on research instead of educating & training teachers, therapists & families? Has our education system made teaching so difficult that the idea of teaching no longer is exciting to our college graduates? Are we not accessing effective interventions? Are we hiring just because someone has a license & not the education or experience due to shortages? Are our budgets so tight that we cannot provide support for the teachers once they are in these classrooms? Are we expecting our teachers to handle more students than they can at one time? Do we have to put more students in a classroom that is truly therapeutic just to make our payrolls?

Are our Universities failing? When was the last time a teacher at the college spent time in the classroom managing a child with autism? What materials are they teaching from? Does each university provide effective mentoring? How can a student take a weekend credentialing program in Autism & be prepared? How can students just take classes on line & be prepared? What have we sacrificed for quickness & media ability?  Are the training programs truly effective? Why is it that tuition at colleges is so high, loans are needed? What have our graduate students received for $40,000 a year!!!!

I can’t help thinking that it is all of the above & that we need to take a careful look at what’s happening & find ways to repair.

We have the knowledge. We have the technology. Certainly a great deal of money is being spent.

Perhaps all this Mindfulness infusion into our culture needs to be infused into our administration at every level (credentialing departments, universities, private & public schools, agencies, centers, clinics, government) & allow the time to find real solutions instead of plugging holes in the dam.

Perhaps we need to get away from our screens, come face to face with each other, turn the systems upside down & actually see where they are working & where they are not working. Perhaps we need to stop competing & do more collaborating/sharing between districts, universities, centers, schools & clinics. Perhaps we need to look at how the salaries have sky rocked just like home prices did, leaving more people without possibilities.  

Perhaps everyone needs to take some long breaths instead of holding them & hoping to survive the day.

I started in this field when we knew very little but it was a time when those who cared about Autism came together to find solutions. It is now 40 years later & I am wondering what has happened!!!

What do you think happened? What are you willing to do about it?

First Breathe deeply.

Thought I would share

Some Tips for Parents of Children with ASD

  • Life as you knew it has changed
  • Along with your child’s gifts and talents you will have to support his/her learning challenges
  • Your own family values, beliefs, hopes and desires will lay the foundation for your actions
  • You will need to be an informed leader of a lifelong team
  • You will need to create this lifelong team
  • You will need to lead this lifelong team
  • Parents are
  • Responsible for the support and positive development of their children
  • They accept the child for who he/she is and find strengths and develop them
  • They guide (from their own experiences)
  • They coach (to build skills)
  • They mentor (to teach)
  • Offer wisdom
  • Offer safety
  • They encourage mind, body and spiritual well being
  • They celebrate the small step by step successes of their children
  • Families MUST
  • Learn everything about their child’s learning challenges
  • Become well informed about current state of the art interventions and strategies that will help support growth
  • Should learn how to evaluate the progress of an intervention and be ready to STOP it if it isn’t bringing about positive change
  • Need to learn how to develop independence in their child EARLY
  • Re-think their role as mother and father and add on teacher!!!
  • Stop doing and thinking for their child and instead build
  • Communication skills
  • Skills of daily living
  • Social Skills
  • Set Rules
  • Set boundaries
  • Set expectations
  • Teach other family members to become mentors, coaches and teachers
  • Teach home care-providers to become teachers not Nannies & Butlers!!!
  • Start early to help your child understand that they need to
  • Communicate, Socialize and participate in the family
  • The Child Must Learn
  • To dress themselves
  • Feed themselves
  • Shop for themselves
  • Cook for themselves
  • Maintain their own clean spaces
  • Maintain good hygiene on their own
  • Problem solve
  • Parents Must
  • Stop thinking and doing everything for their child including
  • Communicating
  • The longer the parent does it all, the harder it will become to encourage independence and success in
  • Home, School and the Community
  • When Parents Do it For them
  • The child never learns to solve a problem
  • Test out solutions
  • Find Answers
  • Develop plans to implement solutions
  • In the end they will ALWAYS need someone to Think and Plan and Do for them
  • How?
  • Start early (now)
  • Start small
  • Build gradually
  • Consider their current skill levels
  • Be Patient
  • Be Calm
  • Celebrate each small step towards independence
  • Acknowledge each and every communication intention: what they look at, what they point to, sounds they make, taking you to what they want and then EXPAND from there
  • Play with them and teach them to accept you as a play partner. Join them in their preferred activities and then EXPAND from there
  • Identify jobs they can help with in the home (putting away toys, putting clothes in drawers, putting dirty clothes in laundry area, helping to carry things in the store and them putting them away after shopping, empting trash, setting the table, making a snack and packing their lunch for school)
  • Teach them Daily living skills and require them to participate more and more instead of you doing it all.
  • Hand washing, tooth brushing, bathing, dressing, hair brushing, using utensils, using a napkin, pouring, stirring are some places to start
  • Expose them to community activities (parks, family celebrations, temple, stores, museums, art galleries, music events)
  • Start with short visits and with places of THEIR interests
  • Use visual supports in form of visual stories and visual schedules to show them how it will be in those places
  • When Parents
  • Expose their children to the community then the child engages in learning.
  • They learn social skills, language expression and comprehension, motor planning and problem solving.
  • Parenting is Complex
  • Each parent has to give up something when it comes to seeing that their son or daughter with a special learning challenge LEARNS
  • Each parent becomes a part of not only providing a safe environment in which to live but a TEACHING ENVIRONMENT in which to LEARN
  • So, parents need to sleep well, eat well, connect with each and form support groups, share ideas, find time to do the things they enjoy too!
  • Parents also need to be there for the other siblings in the family and encourage their unique strengths and talents

How Can We Start To Accommodate Children with ASD in typical Classrooms?

Just wanted to offer some first steps for regular education teachers…Here are some ideas for accommodating & modifying

Accommodate: What does that mean?

  • To make an adaption
  • To make an adjustment
  • To compromise
  • To re-vision
  • To re-shape
  • To Shift our thinking
  • To Transform

Modify: What does that mean?

  • To change, correct, convert
  • To refit, repair or reconstruct
  • To remodel

WHAT Do We Modify or Accommodate?

  • The Environment/Setting
  • Materials
  • Content of lessons and activities
  • Perhaps people in the classroom
  • Perhaps the amount of time given
  • Perhaps the amount of work given

The Environment/Setting

  • Space between desks, tables
  • Less clutter
  • A special seat closer or further away from specific people/teacher
  • Design a quiet corner
  • Reduce Visual distractions (walls, boards)
  • Some students need a study carrel
  • Some students may need a special chair or desks

   Time Management

  • Shorter sessions
  • Frequent breaks
  • Extended time for some projects
  • Shorten tests
  • Shorten assignments

Materials & Equipment          

  • Books on tape
  • Check Lists / Flash Cards
  • Number Lines /Calculators
  • Computers
  • Magnification Special Paper
  • Manipulatives
  • Tape recorder

Other Supports:

  • A student buddy to read to them
  • A note taker to take notes for them
  • More examples/more practice with each lesson

Specific Modifications for Different Challenges

  • Visual Challenges:
  • Larger print
  • Magnification
  • Sitting closer to the board
  • Auditory Challenges:
  • Hearing aids
  • Taping sessions/listen later/Books on Tape
  • Seat Position/ Keep room quiet
  • Printed Instructions /Teacher gives outlines of assignments
  • Teacher repeats directions more than one time
  • Teacher makes sure to face student
  • Strategies for Everyone
  • Highlighting important key words and passages
  • Avoid window seats for those who are very distracted
  • Students could wear ear plugs or headsets if noise bothers them
  • Offer test taking in a quiet room or in another space
  • Special pens, pencils with grips, scissors
  • Special seat cushions for students
  • More Strategies
  • Teach around interests/ Use favorite people, foods, toys, activities to read about
  • Use lots of repetition with new materials
  • Leave space between words
  • Make materials funny or silly
  • Final Thoughts 
  • BE PATIENT
  • LEARN TO SIMPLIFY
  • THEN LEARN TO CELEBRATE SMALL STEPS TOWARDS SUCCESS  

 

  • When My Worries Get Too Big by Dunn Buron is a great curriculum to use with children with Autism to help them handle their anxiety
  • Create a feeling chart (1, 2, 3, 4, 5) for each student
  • When I am at 1: I am feeling good, thinking about my favorite things and I am relaxed and ready to work
  • When I am at 2: I am still feeling okay and I know what's happening and I don’t really have any worries
  • When I am at 3: I might be getting a little nervous and something might be bothering me
  • When I am at 4: Something is bothering me and I am getting upset
  • When I am a 5: I am losing control
  • Now make a chart that shows what a student can do when they are at certain numbers (each student might come up with what they need)
  • To keep me at 1: Let me know I am doing really well. Help me feel proud
  • To keep me at 2: Give me clear expectations, make things manageable
  • When I get to 3: I am worried, try and find out what might help me (clarify, do something I really like, go to a quiet space)
  • When I get to 4: Deep breathing, thinking about happy things I can do later, take a walk, get something I need, get a drink
  • When I am at a five: It’s RED ALERT: I need to be in a safe place with no demands but calming activities. Give me time alone
  • When Our Children Learn:
  • 1) What behaviors are expected of them in different situations and how their behaviors affect others
  • 2) What behaviors are not appropriate and are considered unexpected and how they affect others in another way.
  • 3) Then they can make better choices if they are motivated by what others think and feel about them
  • Example: In a library I have to use a quiet voice, treat books nicely and sit in my chair. This makes my teacher happy and then I get to look at books I like J. Or I can scream in the library and throw my books on the floor. This will make my teacher very disappointed and she will make me leave and then I will NOT get to look at the books I want. L
  • Example: When my classmates and I do an art activity together and I start making loud noises and throw my paper and pencils on the floor, they look at me and then move away and don’t want to be with me. This makes me sad. BUT, when I do the art activity too and use a nice voice, they smile at me and stay at my table and be with me. This makes me Happy
  • So teachers can map out these examples for the student. This is called Social Behavior Mapping by Michelle Garcia Winner
  •  If students are motivated to please others by doing what is expected they will begin to change their inappropriate behaviors
  • Emotions can be controlled when they feel less stressed
  • Room is quiet/ Schedule is posted
  • 2) Assignments are short and you do some pre-teaching of parts
  • 3) They know when the activity begins and ends
  • 4) Directions are simple and understood
  • 5) Teach them to shift their attention
  • 6) Working on memory activities
  • 7) Teach flexibility (more ways to solve problems
  • 8) Teach them how to organize their papers, desks, assignments
  • 9) Teach them how to plan completing project
  • WHEN WE SUPPORT THEIR INDIVIDUAL LEARNING DIFFERENCES

 THEN WE GET THE BEST FROM THEM

 

 

HELP ME: WHERE DO WE START

           First give yourself permission not to be perfect and them as well

           * Start working on these skills on non-school days when expectations are less

           * Take on these roles (dumb, confused and forgetful)   “Where did I leave my keys? I wonder what we need to make your lunch, I am sorry I forgot where your jacket is, can you help me?

           Offer choices and encourage choosing (which fruit would you like in your lunch today)

           * Learn to WAIT (sit on your hands, close your lips) allow them to process and try first. Then provide more support (verbal or visual)

           * Then identify one job or two your son or daughter can do to contribute to being part of the family (unload silverware tray in dishwasher, or put something on the table for dinner, or bring in the paper or mail, carry in the milk container and put away, carry their laundry basket to wash room or just put a few items into the washer or just close the lid)

           * They could put a placemats on the table for a meal & or put out enough napkins for the whole family

           * Begin to expect them to pick up their stuff on weekends and put it back

           * Tell your son/daughter it is cold outside or raining, ask them to get what they need, WAIT before telling them or getting it.

           The night before school offer them a choice of two colors of shirts or two kinds of socks they will wear the next day.

           * When you set up an art project at home, forget something they need. WAIT, have them go find it

           *   Don’t load their meal plates. Put small quantities & then put food out of reach. Encourage them to ask for more. Don’t put anything on the plate & encourage them to say please pass the _____ or I would like some______.

           On weekends give your son/daughter of choices of activities

           * Don’t open boxes, jars, packages.  WAIT till they ask for them to be opened. Let them try to put that straw into the box of juice

           * When it is time for their bath or shower, do not turn the water on. Ask them which one is hot or cold? Which shall we turn on? Teach them to adjust temperature with knobs.

                          ** Each Time you expect your child to initiate, make a request, respond or find a solution you are increasing their cognitive development and helping them move to independence.

           ** When you choose chores think about their age & their developmental level & their physical skills. Choose just a few & then add more over time

           * They could rotate chores with their siblings

           * You can model chore, talk them through chore & or make a visual chart for the steps

           * Chores could be rewarded with praise, money or special activities with the family

           *** Cooking at home is very important. Start simple, then get into planning, purchasing. They should also help clean up afterwards ( teach opening packages, measuring, mixing, draining, chopping, eventually cutting)

           * Teach use of the toaster, microwave, blender & eventually the oven

           * Making something & then eating it immediately is very reinforcing

           COLLABORATE WITH YOUR STUDENT’S SCHOOL TEACM

           Make frequent visits to your student’s program observing them involved in independent skill development.

           * Practice actual skill with the teacher or therapist when you visit and get feedback

           * Ask the teacher or therapist to help you make visuals for home

           * Make a list of all the independent skills your son needs, prioritize them with our team & begin to put them on the IEP. While the team is working on them in school pledge to work on them in the home.

           Ask you teacher or therapist to complete an independent living assessment and share results with you. Prioritize tasks. Identify which ones can be worked on in school and which at home or if both should be worked on in both environments.

           * Then sit down with the family & set a schedule for helping your student begin to learn independence

           * Agree to give choices, WAIT, assign chores, play dumb

           * Ask teachers when other family members can come to learn

           * Ask teacher to schedule your outside providers to come learn

           You Are Not Alone: Together With Others You Can Do Great Things

            

            

            

            

            

            

            

            

 

            

            

            

            

            

            

            

 

            

            

            

            

 

            

            

Building Independent Sons & Daughters

OR

Getting out of our own way and Firing the Nanny and Butler

It’s not so easy for parents…..

           Parents may feel guilty

           * Parents may be afraid their son or daughter might get hurt

           * Some parents want it perfect & done fast

           *Parents may not understand their child’s capabilities

           Parents may work full time, have other siblings & have little help in the home

           * Parents may not know HOW!! Confrontation can be hard

           * The task seems so time-consuming & exhausting

           * Sometimes cultural beliefs and roles make it difficult

           But You Are Sustaining Dependence The Longer You Wait

           You are anticipating their every need

           * You are problem solving for them

           * You are communicating for them

           * You are picking up after them

           * You are taking care of every activity of daily living

           You Are Limiting Their Growth & Development

           They never have to initiate

           * Think of a plan or carry out a plan

           * They are not required to communicate but instead throw tantrums to get needs met

           * You choose their clothing

           You do their laundry

           * You make their lunches

           * You make sure they have a coat or jacket

           * You pour, cut, stir, open and even get out all food items for them

           With the best of INTENTIONS (Love, Caring, time, fights, lack of knowledge)

           BUT Parents Need to Do Less for their son/daughter BECAUSE

           Your children will take a longer time to learn all the independent activities that their typical peers learn easily

           * Your child learning skills will build his/her self-esteem, give them confidence and develop a willingness to try new things

           * Your praise for their accomplishments in this area will make them proud

           * The more skills your son or daughter attempts, partially meets or totally accomplishes opens more social doors, educational doors, vocational doors and living doors

           INDEPENDENCE INCREASES CHANCES FOR FUTURE SUCCESS IN ALL ASPECTS OF LIFE

           So Get Out of Your Own Way

           FIRST Forgive yourselves if you are holding yourself responsible for your son or daughter’s challenges

           THEN

           Let go of the following pre-conceived ideas

  1.    a) My child will never learn, or it’s too early to teach that or I can’t learn how
  2.    b) My child can’t do that, my child won’t do that
  3.    c) I don’t have time to help my child learn this
  4.    d) This is the school’s responsibility
  5.    e) The Speech Therapist, the Occupational Therapist & the Physical Therapist or teacher will

                  solve this problem

           DEVELOP AN ATTITDUE OF POSSIBLITY THINKING

           THEN REACH OUT FOR HELP

           To Parent Networks who provide workshops on just about everything, even teaching independent skills and how to write functional living IEP goals

           * To your education team & regional center team early and make sure independence is a major part of each & every IPP and IEP discussion with IEP & IPP goals addressing skills of daily living

           * Hire in home helpers but make sure they are also addressing the building of independence

           * Reach out to counseling if you are needing to work through guilt, depression or accepting and prioritizing life with your special needs amazing son or daughter

           Take Responsibility

           Teachers want to help…reach out to them

           * Agencies and private consultants are available…..reach out to them

           * Manuals and curriculums are available….. Buy them, read them and choose one activity a month to try

           * There are conferences, workshops, lectures, seminars, video web sites on line for teaching living skills…. Click on them, experience them

           Start giving your son/daughter choices early

           * Don’t wait to your son/daughter is almost an adult to act

           * Don’t do everything for you son/daughter

           * Don’t rule out possibilities

(see more steps in next blog)

Siblings Have Feelings Too 2015 Each time I spend time helping in Indonesia I gain remarkable insight. This time was no different. One of my take homes this time was never take for granted the vast number of resources, understanding & access to information that families have in the United States. During my workshop on Bali, “Siblings Have Feelings Too” the tears of one mother will always be a reminder to deliver information caringly. In the USA we take for granted that families know they will have challenges helping their son or daughter with special needs & that they also know they may need to find ways to support the typical siblings of their special needs brother or sister in the family. Ibu (mother) Panji, a mother in Bali, who tries everything she can to support her son with autism, came to realize that she also may need to find support for her other children who might have challenges due to the care of their brother or sister.   A double sadness comes to mother Panji while attending my workshop. Her tears showed me that.

In the next couple of blogs I hope to share some meaningful information to help families and professionals working with families.

Why should parents be concerned about sibling’s feelings?

Siblings can develop feelings of jealousy, resentment, isolation, anxiety or fear because they have a brother or sister with a special needs and then entire family is affected

When parents are also worried about siblings they are more likely to feel stressed

When siblings’ feelings about their special needs brother or sister are not addressed they are more likely to develop anxieties, frustrations and guilt

WHAT MIGHT SIBLINGS BE THINKING?

Will I get to spend time alone with my mother or father?

Do my parents still care about me?

How will I explain my brother or sister to my friends?

Why doesn’t my brother/sister have to do chores and all the things I have to?

Why does my brother/sister act that way?

I am embarrassed when people stare at my sister/brother and my family

How am I going to play with my brother or sister?

It seems my brother/sister gets so much more attention

Will I catch what my brother or sister has?

SIBLINGS MAY FEEL   (Confused, Lonely, Jealous, Guilty, Fearful, Responsible, Sad, Angry, Frustrated)

Stress from embarrassment

Stress from not being able to engage with their brother or sister

Stress from aggression from their sibling

Stress by their own perceived future responsibilities of taking care of their sibling

They can feel ignored or uninformed & so left out

They may feel left alone due to their sib’s medical treatments

They can feel resentment when family plans have to change because of sibling behaviors

They may feel they might get what their brother/sister has

They may feel fear wondering if their sibling is going to die

They might feel jealous due to all the extra time their sibling requires

They could feel guilty & think they did something to cause their sibling’s problems

They could feel guilty because they complain about their brother or sister and they know they are the one without the disability

They will feel sad because the future is so uncertain

They may feel embarrassed of their sibling’s looks, behaviors or inability to communicate

They will feel confused because they lack the information about the disability

           IT IS SO, SO IMPORTANT FOR PARENTS TO ASK THEIR CHILDREN HOW THEY ARE FEELING OVER AND OVER AGAIN, THROUGH All Steps in THEIR GROWING UP SO FEELINGS CAN EB IDENTIFIED AND SOLUTIONS FOUND

More To Come!

 

 

Keeping Your Apple Barrel Full (Well-Being)

We must take care of ourselves so we can take care of those we love or work with who have complex special needs.

  • Certified Mental Health Counselor, Lee Schnebly has a beautiful image for all of parents & health practitioners
  • She asks us to see ourselves as an Apple Barrel. If we give all our apples away (to our children, clients, students, neighbors, friends) & we are totally out then we will be unable to function effectively until we fill them up again. These apples represent our emotions.
  • They are many types of apples available. We ourselves have the responsibility for getting whatever apples we want & keeping our barrel full.
  • Our life’s activities can fill our barrel & also take away our apples
  • It’s all about balance & attitude
  • These Activities May Give us Apples: (Add them to your barrel)
  • Going to a favorite place
  • Reading a favorite book
  • Time with close friends
  • Time with family
  • Listening to your favorite music
  • Spending time alone
  • Eating Ice Cream
  • Dancing or Singing
  • Walking on the Beach or Mountain or Forest
  • A child learning, therapy working
  • A parent happy & satisfied with our work
  • Fair compensation for our work
  • Exercising
  • Finding a special someone in your life
  • Sleeping in once in awhile
  • BUT there are ACTIVITIES THAT CAN TAKE OUR APPLES AWAY (be aware)
  • Overworking/tired
  • Getting Sick
  • Having an argument with a loved one
  • Letting down a Family
  • Not being able to help everyone
  • Not making time to do our favorite things
  • Holding in feelings & not sharing
  • Being angry, anxious & confused
  • SO
  • Be sure to check in on how full your barrel is & make sure you are keeping it reasonably filled with the right kind of apples
  • Then you are developing well-being & when you are playing your best game, your child, your student or your client will benefit from all your efforts

A Center of Emotional Well Being In Bali

About a 30 minute drive from Ubud, there is a special village, where Ibu Gusti has lived with her family. Her father was a very talented carver prior to the bombings & their property was used to create amazing pieces of work. Today it provides education for all. It’s a safe & caring center. It is calm, well organized & emotionally supporting to all.

In the morning children with learning challenges come to the center. In the afternoon typical children who need support in regular subjects, attend.

I enjoyed watching a special teacher work with 4 children with special needs who had been deemed, un-teachable or asked to leave their area’s public school do to their overactive behavior. They sat on a soft pillow in a circle just like their peers. Their eyes were engaged in the story read by their teacher just like their typical peers. They answered questions & all appeared too really like the story, just like their regular peers.

Most of these children appear to have cognitive delays & one perhaps attention deficit disorder. All have challenges learning to read, write & learn math.   The girls came with their heads down with fears of offering anything.

At this well-structured center with people who believe in their capability, they learn. The center is using visual pictures to support, slower pace teaching & first teaches them to be clean & well groomed. This gives them pride.

Ibu Gusti & I spoke about some additional strategies that might help the children learn to write & color. We discussed some ideas on how teach math & reading in more practical ways, instead of through memorization or ditto work. She is going to start, in the new school year, having the students make shopping lists & obtain specific numbers of items to learn quantity. She will also have them cut fruits & count the slices & also begin to see times during the day they can count out items each other need. It is also my hope to bring them the Hand Writing without Tears Program next year & demonstrate how to use at their center. I explained how they might use different grades of sandpaper for tracing the letters of the alphabet or learning to color in lines.   We talked about using grips on pencils to help, slant boards for writing & to read books about Balinese children instead of books from other countries.

We discussed how to prepare her students to go visit community places (shops, museums, post office) by using Carol Gray’s Social Story method of using pictures & words to describe those activities before going. We discussed her reading these stories the whole week before they go to the new place. This will prepare them, reduce anxiety, increase communication & understanding.

All four children finished their coloring project, we celebrated their success & their smiles were huge!!!

Open for Inclusive Education in Bali

It was wonderful meeting with about 120 teachers, administrators & parents who are hoping to successfully include children with learning differences into their schools. First I gave a workshop, toured & finally met with administrators.

They are already accepting some children with ADD/ADHD & Asperger into their programs. They are already wondering how they will teach their current 23 children while meeting the needs of the 24th student who learns differently. The teachers are already asking if I think it is possible to teach 24 students with only two teachers in each classroom. The kindergarten is asking, the elementary is asking & the middle school is asking.

The classrooms, in one school, a school for 407 students, are nicely organized with designated centers to teach Math, Writing, Art, Circle Time, Play, Science and Language Arts. Several children share a table while doing their assignments or activity, no individual desks.

There is a written schedule for the students, a place for their water bottles & personal items. The rooms are colorful & happy places in which to learn.

I tell them it is great that they have labeled each center in words & perhaps a picture could be added that is meaningful. I suggested they might cover the shelves of enticing materials when they are not supposed to be available for children’s choice. I suggest that they remove wall materials & bring them out when they are actually being referred to, decreasing the amount of stimuli & making it easier for the child with learning difference to isolate what is important to attend to.

The presentation was divided into 3 parts. The first was looking at the difference between a typical child & a child with Autism. The second was a discussion on ADD/ADHD, the differences & what teachers can do to support. The final hour together was a period of questions & discussions.

They asked how do they get a child to play in a group of 5. She was 5 years old. I asked if the child knew how to share yet. I asked if the child could play with one other child yet. Did she know how to use the play materials? Yes she knew how to play with puzzles & blocks but not with the animals. I suggested they start with toys she clearly knew what to do with. I suggested they just pair her with one other child & divide materials in half & work on doing play together, sharing the materials (blocks, puzzle pieces). I suggested they wait for some time to expect her to join their imaginary play with animals. They must first teach her to play with animals.

Then they share with me about a new student who did not want to do anything but discuss the Universe. He was refusing to do anything else. This student had been diagnosed as Asperger. He was in Middle School. We discussed the concept of First/Then, Non-Preferred/Preferred. We discussed the need to be calm, but to build boundaries & expectations. We discussed the need to help the student learn that he cannot always do only what he wants. I showed them how to ask the student to only do a very, very short math problem before he gets to work on the Universe. They we discussed how to increase the number of math problems before working on the Universe.

One teacher explained that her student with special needs kicked or hit his friends to engage them. I asked if he knew how to play the games his friends did. I asked if he knew how to ask to join activities. They said they told him his friends would not like him or play if he was mean to them. I told them, that is only half the process. They must help him learn the expected behavior to use. We discussed using Carol Gray’s Social Story Curriculum and Michelle Garcia Winner’s Expected & Unexpected method to help this child learn. I discussed both strategies.

After the larger workshop had ended I met with the principals of each program, kindergarten, elementary and middle school. They were all so open to learning how to help support these included children.

We discussed the concerns of their teachers & the need for them to help mentor them. I suggested that they meet with each teacher & have them identify one or two suggestions I had made that they felt they could implement. Then I suggested the administrator help make it happen with them.

They shared that they do not always know if the child coming into the center has a specific learning challenge or what it is. We discussed the application process & ways to find out before a child starts. We discussed designing a different admission process for these children. Perhaps starting half day at first so the teachers can get to know them, the other children accept them & the student themselves learning the way this new school works. We discussed how important it is to work with the family on admissions & to involve them in all interventions used.

We discussed the need to teach teachers about disabilities, teaching strategies & classroom management. We discussed the need for them to truly identify the type of child they can take & how many they can place in each classroom before there is a negative effect on the children, the teachers & the school.

The administrators seemed very excited about the suggestions.

It is my hope to work with these teachers while I am home through email & to return again to mentor.

Soccer Brings Typical & Special Needs Together

Soccer on the island of Bali: Accepting, Accommodating & Applauding

Yesterday 26 typical children arrived on a simple soccer field in Mas & were joined by 4 children with physical challenges, children you rarely see outside their villages & rarely see in a public school setting. The 26 typical were receiving scholarship funds so they could attend regular school, an activity not all children can afford in Bali. Two of the physically challenged children came in their wheel chairs pushed by friends or teachers. Two others smiled as they walked on the field encouraged by their teacher. One child’s mom supported quietly in the background. It was the first time her son had left the village & joined a community activity other than time in therapy or at YPK. This young boy was about 11 years old.

My youngest son had planned all the activities for the two hour soccer event & had brought 30 leather soccer balls, one for each participant, jerseys for the children to take home as well, soccer ladders, cones & support equipment to execute the exercises they would engage in.

My middle son listened carefully the night before about the activities & was asked to support the children & come up with some additional modifications for those less able.

My youngest son’s significant other also joined with her excitement, enthusiasm & caring manner to help facilitate the activities as well.

Cones were set up along one side of the field for all to line up, a ball at the feet for each.

Other cones & ladders were set up to outline centers where a variety of activities would occur.

Children with physical challenges were accepted in the lines, at the centers & on the field enjoying the activities.

Children with physical challenges were cheered & applauded as they tried and succeeded at each activity.

Some activities were modified to accommodate feet& legs that did not work & yet there was a smile on every child even with his or her limitations. Teachers pushed wheel chairs, hands held balls as they were moved across the field in their chairs & helped to throw balls through nets, into hula-hoops or straight at the cones to knock them down.

Two of the children with balance and strength challenges ran the lines, fought to get a ball away from another & balanced as their feet went in and out of spaces along the ladders. Typical eyes on them smiling.

Did I mention that none of the coaches spoke Bahasa or Balinese but there was absolutely no miss communication between them & the children that day? The children watched & the coaches demonstrated & the children tried every exercise.

It was a day of high fives, applauding, verbal celebrations (Bagus (good job), hooray, yes, great, try again)

Yayasan Peduli Kemanusiaan

Today I had the pleasure to spend the day at the Annika Linden Centre facilitating a seminar for my host agency YPK.

Today’s topic “Helping Siblings who have brothers or sisters with Special Needs” brought tears & intense thinking on the part of parents and teachers.

I was once again reminded that it is not only sad & overwhelming for a mother who is trying so very hard to understand & care for their child with special needs but it can again be sad & overwhelming to know that your normal child might be in need of some special support.

First, we discussed the possible feelings siblings could have (fear, embarrassment, isolation, guilt, worry & confusion) especially if they are not given information & asked to express how they are feeling about the situation.

We then spoke about how important it was to have a plan in mind & written out for those who may be taking care of the sibling when the parent is no longer able or has passed on.

On participant added how difficulty it can be for a Balinese family to realize that their son or daughter will never be able to take care of them, a tradition & expectation in Bali.

The plan would outline 1) Financial strategies, 2) Legal issues, 3) Medical needs, 4) Likes & fears 5) Interventions that work and 6) Friends& family members that can be of help.

We discussed the need to explain the type of disability to their normal children (autism, downs syndrome, cerebral palsy) and to ensure that this challenges is not something of which a brother or sister is likely to pass on or catch from the child.

I then offered the idea of putting on sibling workshops. I suggested that each center or centers together could offer a day each month where siblings are invited to have fun, exchange experience & even learn together.

The sibling workshops might have 6, 10 or 12 participants & last from 1 to 4 hours long. They could be co-run by an adult sibling &a teacher. We discussed the benefits of siblings meeting each other to see that they are not alone & to learn how other siblings handle the same challenges.

Teachers from the center thought it very possible to offer a sibling gathering & parents were encouraged to reach out & ask for one to happen.

During lunch time I was asked to meet with a family & talk about their 6 year old son diagnosed with Autism & Cerebral Palsy.

He loved my squeezing him & playing hand clapping. He gave me plenty of eye contact when I engaged in proprioceptive activities with him. He kept returning to me hoping I would engage & when I tickled him he laughed & laughed. He would just stand next to me & move his body closer. No words.

Nope, he didn’t seem to have any words but a few times made some babbling-like sounds & babbled right back & he looked straight at me. He liked jumping too. His home therapist was there & very interested in how she could learn to know what he wanted.

His mom, therapist & I discussed ways to use his jumping to count & express wants (5 jumps, 10 jumps, on, off, more)

We spoke about teaching him to dress himself but to first follow directions to obtain each clothing item, observing if he knew the names for each item.

I encouraged them to have him request more instead of them anticipating all his needs & wants. Wait for a gesture towards an item, a point or a look & then ask him to show you more often what he wants so it can be shaped into a better form of requesting (point) Teach him to shake his head yes or no when you ask him if this is what he wants.

Play with him I encouraged & teach him to imitate 1st large motor movements & then sounds you make. When he can imitate you have the beginnings of his ability to learn from you.

I asked if they had connected with an Occupational Therapist or Speech Therapist but was informed that no services were available for him & that a Speech Therapist only works on eating and his had no challenges in that area.

Lunched ended & I just encouraged them to send me additional questions via email

It was my hope to see the therapist once again before my time in Bali ended to help her think of ways to help this adorable little six year old.

Our 2nd session focused on how important it is to take care of ourselves so we can take care of those we love with special needs. I presented the wisdoms of Robin Sharma, Robert Schuller, a Mom of a special needs child & Adrianna Huffington.

I engaged them in the concepts of the apple barrel filled or emptied of apples & the idea that we are all like lamps, that in order to burn we need to be filled with oil. They smiled & I had each of them tell me something they would fill their apple barrels with (reading, sleeping, exercise, hope, positive attitude).

We talked about how we all lose our apples (stress, dealing with angry people, hearing negativity, a fight with a loved one etc.). It is neccessary to refill the barrel then.

We discussed the benefits of meditation & practiced breathing together. I had them close their eyes & breathe deeply then sending out a long deep sigh with every exhale. We did that several time.

I encouraged everyone to eat well, get enough sleep, find others who work in their field to discuss solutions, see the cup half-full & to Not BE SO Hard On THEMSELVES. I suggested that no one can do this alone & no one has all the answers.

Our day together ended with some questions they had on their minds & with their suggestions for topics for our next time together. They were Autism, Autism methods, Healthy eating & how to deal with the sexuality issues of their special needs population.

We closed our eyes a final time, took 3 deep breaths & let out 3 large sighs as we all exhaled together.

The Center With A Big Heart

I was asked to present on Autism to the UBUD Rotary club on my second trip to Bali. They had heard that I had been on the island the year before helping. They were interested in knowing the current status of Autism in the world & what I was doing on the island.

The Rotary Club was comprised mainly of expats from California & Australia wanting to make a difference on the island. They had retired to the island, some starting businesses, others consulting & still others opening restaurants & helping in hospitality.

One of the members was volunteering her artistic talents at Sari Haiti Center https://www.facebook.com/SariHatiSchool?fref=ts just outside Ubud, just a 15 minute motor bike trip from my bungalow. She asked if I would meet with the founder while I was on the island. I met Tanja & we immediately connected. She invited me to connect, observe & learn what was going on at Sari Hati. Her hope was that I would connect with the director & her team at the center.

Sari Haii is a center where children & teens with a wide variety of special needs engage in yoga, drumming, art, community meals, ceremony & cognitive enrichment & come together in a safe, supportive & caring environment. Drivers pick up the children at their villages & bring them to a place they can continue to interact & learn, otherwise they would be limited to remaining in their own homes without a great deal of outside stimulation or enrichment.

The Founders provide services free to all, just like all the other centers I have previously mentioned. They find ways to receive donations & sponsorships from outside the island or from businesses & organizations on the island.

My sharing at Sari Hati has focused on helping them to better understand how to support the children with less communication, short attention spans & lower cognitive ability. Sari Haiti has also been one of the 8 centers who now comes to the larger collaboration at YPK http://ypkbali.org/ each year I visited the island.

A Walk Through Ubud, Bali

 

A Walk in Ubud, Bali

There is a soccer field between Monkey Forest & Hanuman Streets in Ubud. Children play happily barefooted on a sparse green grass field, with rusted goal posts. The field is surrounded by a variety of shops & restaurants. A large painted picture of a child with wings is painted on one of the stucco buildings with the words Mentally Disabled towering above the child’s out-stretched arms. As you approach the building another picture of the Winged Boy is positioned over the entrance way saying “Not less, but differently gifted”.

I couldn’t pass by without peeking in. I walked through the open doors & new I was in a center for children with special needs. “Heh, Karen Kaplan, What are you doing here in Bali? Came a voice. The second connection, BINGO. The voice came from an Occupational Therapist colleague I had just met in California weeks before. What are the chances I would fly to Indonesia & meet a colleague?

Sjakitarius was the second center I would observe, connect & learn about. They served mostly children with Downs Syndrome but I had the pleasure of meeting a few kiddos with Autism & Cerebral Palsy at the center. The children were organized into classrooms & participated in table top activities, physical & art activities & enjoyed music & lunch time at the center. Older students also helped in the kitchen/restaurant that served the public on the patio of the center.

Sjakitarius was founded by a mom with a daughter with Downs Syndrome from Holland. The center however was directed by a young Indonesian women with a passion to help & make a difference. Volunteers from Holland joined each year to help the center grow & expand their knowledge.

After connecting to the founder, I was asked to return the next year to connect & share with the team at Sjakitarius. They were interested in learning how to use Music Therapy to help teach their students. They were also interested in knowing what additional programing could be offered to older students at the center. The team at Sjakitarius then joined the collaborative group workshops at YPK.

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