On the Road With Autism

My journey of discovery. I welcome your comments!



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!

 

 

So Many Important Questions for Families & Professionals

1)What is the proper way of learning for a child with autism?   Every child with autism may have a different learning profile as autism is a spectrum disorder. Their way of learning will be influenced by their communication levels, cognitive levels, sensory challenges, motor challenges & social awareness. It is believed that the best program for all on the spectrum is some level of structure, emphasis on visual supports, addressing executive functioning challenges, understanding, addressing & accommodating sensory challenges, supporting motor challenges, developing joint attention & social reciprocity, teaching social rules & identifying the interests of the student & using those interests to engage them. A program must address the anxiety of the student with autism, his or her challenges with starting tasks or getting stuck, the child’s black & white view of situations & their ability to assess how big a problem really is & to find solutions.

2) How does one set academic targets for students with autism in an inclusive classroom? Every student should be assessed in order to identify their cognitive levels, identifying strengths & weaknesses. Academic targets should be set from the results of the assessment. Teachers need to look at reading levels (decoding and comprehension), writing skills (motor & composition), mathematics (calculation & problem solving), spelling & their cognitive levels (comprehension is key to setting realistic academic targets)

3)Are there any home treatments for children with autism whose parents are busy working? Many families must work all of the world. In some parts of the world, there are agencies who can come into the home & train the parents or someone that the parents have hired to support the child when the parents are working. These support people need to understand autism & particularly the specific child being supported.   These people could go to school & observe & learn from the teachers how to support learning (reading, math, homework). These people could be trained to help develop the child’s independent living skills. Some parents may need to decide not to work & become the child’s teacher of home skills. In some countries parents keep their child at home & work with the home school associations. They have on line curriculums they can access.   Home treatment is up to the parents to develop & guide. They must locate organizations, pay organizations to come in to help support their son or daughter’s home learning.

 4)When is it the right for teachers to encourage children to maximize their potential? A teacher’s job is to inspire a child to learn when they are very little. Learning should be fun and engaging. Parents and teachers should encourage a child to learn all the time. It is a matter of making learning meaningful to the child. So one must know where the child is developmentally. Then learning can be structured around their level of understanding, communication and interests. I believe that children with autism need to start young to learn.

 5)How do we help children with autism learn better?   First teach at their level of understanding. Next make learning fun. Next make learning meaningful. Use their interests. Then structure each learning activity visually. Then praise for every little step forward. Work with a speech therapist. Work with an occupational therapist. Work with an educational specialist.

 6)How do we deliver effective education to children with autism and mental retardation? Once again, every child learns differently. A child with lower cognitive ability must have things presented at their level of understanding. A child with lower cognitive ability will need more practice more, have smaller amounts of work & many visual supports. They must have a way to communicate first &foremost. (Signs, Pictures, Technology). All teaching must be meaningful. Use their interests. What is taught should be functional (truly occur in their daily lives). Teaching must be structured. Small classroom size. Calm environment to learn in.

 7)What is the impact when a child learns one thing from one center and something different from another center? I believe that there needs to be collaboration. If a child is going to two or more centers for treatment then a collaboration time needs to be designed. All specialists should be sharing what they are doing & how on a regular basis!!!!! Children need consistency. The interventions that work should be shared & embraced by all.

 8)How to teach children with sensory integration challenges? Once again, each child has differing sensory challenges. Some are visually distracted. Some auditory distracted. Some are sensitive to touch, taste or smell. A sensory profile should be completed, identifying the challenges & then a sensory diet develop by the Occupational Therapist.   Some students are over aroused while others under aroused & different exercises & supports need to be put in place depending on the sensory integration issues they present.   Teachers need to then modify the classroom environment to accommodate sensory challenges. Teachers may need to modify the learning schedules in the classroom due to sensory challenges. Special equipment may need to be used to support sensory needs. Sensory integration is an individually based intervention.

More Questions From Java

Here are the 2nd set of questions from my participants in Jakarta. It was interesting to learn what they were thinking.

1)What kind of activities should be planned for 17 to 20 year olds who never have a great deal of treatment early? Once again this depends upon the level of communication, behavior, sensory challenge, cognition and social skills. All students should receive a program that addresses independent living skills, social skills, leisure skills, pre-vocational skills, communication skills and community access. Lower cognitive students need it earlier. The education system needs to help them prepare to learn how to live, work and recreate in their own communities.

2)How does one implement a curriculum for a non-verbal child? We all communicate differently. Some through gestures, some pictures, some sign and now many through technology. The teacher needs to adapt the curriculum based on the form of communication system the student has or is developing. Signs need to be taught. Pictures need to be arranged for easy access for responding and technology needs to be programed. Sometimes an extra staff person is needed to help support these children so their communication system can be created and implemented. Non-verbal children are not deaf!!! They hear. They just need a way to respond and we need to structure teaching allowing them to access their own communication systems.

3)What types of activities should be taught to non-verbal children? All (social skills, pre-vocational skills, communication skills, skills of daily living, hygiene, academics, leisure, community access, academics)

4)How do we improve communication skills? There are many activities that can be done to improve the communication skills of our students. Here are only a few. Read to them and take them on field trips to museums, art galleries, parks, hikes, bike rides etc. Point out new objects and information. Work on wh questions with them (who, what, where, why, when and how). Have them problem solve more? Have them make up shopping lists, find things in stores and pay for things at the market. Have them read recipes and prepare meals. They will learn new words in context.   Teach them to greet others, ask questions and have a conversation. When they read have them underline the words they do not know. They discuss meanings of words with them. Teach them to use email and write letters to family members. Have them call friends and family on phones and ask questions. Take them to the library and have them ask where something is located.

5)School learning and home learning is needed. Parents need to stop thinking and doing for their sons or daughters. Learning should continue at home. They should have jobs around the house. They should help shop and meal plan. They should clean their rooms, bath, brush teeth, comb hair, do their laundry and dress themselves. They should set the table, load a dishwasher, vacuum, sweep, dust, and mop. Skills of daily living are very important to becoming independent and learning to problem solve. Parents should get them into the community to see new places and learn new words and rules for engaging in the places they visit. Perhaps the teacher can send home some small assignments at first. A special place set up to do homework is needed.

6)How do we teach children with autism to have a conversation in English…. First make sure they can speak their regular language well. Make sure they are interested in learning English. Then make it fun!!!!. Teach it in context.   When you shop, name things in native language and then English.   Find their interests and have a game of finding out the name of their interest in English. Once they are learning then perhaps get a tutor to work with them privately, slowly.

7)How do we decrease anxiety for children with ASD in the classroom? There needs to be a schedule visually on his/her desk. They need the right seat. Maybe on the end not in the middle of everyone. Look at the noise levels in the classroom. Look at the visual distractions.   Don’t have too many transitions. Let them know when things are going to change, before they change. Let them go first to recess or last or stay inside away from crowds if they like. Give directions visually and verbally. Make sure they understand your directions. Maybe have someone there to help them in the classroom. Give them frequent breaks. Connect with the parents often and have them go over reading assignments the night before. Have parents help make sure they have all the things they need each day for school. Help them keep their space organized. Make sure there is not too much on the page of work they have to do. Keep it simple. Help them get started. Sometimes they get stuck. Give warnings before the end of the assignment time. Let them have more time if needed.

8)Is there an effect of diet or supplements? We all know that less sugar is always best. Less caffeine is best as well. We know some children are sensitive to gluten or casein. This should be tested. We know that they need good oils (not corn oil). Seeking knowledgeable help in this area is always a good thing. All children are different. Not one supplement works for all.

9)How can you prepare your child to go back to school after a long holiday? Put up a calendar. Show him/her visually how the days are moving forward with an X. Put a big mark on the day he/she returns to school. Ask the teacher for some repeat work that your son/daughter could do over the break. Set up a routine at home during the break with school type activities. Read together, visit interesting places, and practice what he/she has learned just prior to the holiday.

 

Questions on Autism in Jakarta, Java

There were 285 guests at the day long Autism Workshop in Jakarta. The participants were asked to list an important question they had before attending the workshop. Many were answered thorugh the presentation. Here are 7 additional questions.  They give you an idea where autism understanding & education is in Indonesia.

1)Can we use similar curriculum to teach children with autism & teach typical children?Yes, of course to those who have the cognitive ability to understand it but the way you teach the curriculum must be adjusted as well. Curriculum might need to be presented in more creative ways. No one learns well if they must sit all day, listen to someone speak and then answer questions on a piece of paper, or in choral style with everyone. It is important to find out the learning style of each student and adapt the way one teaches. Sometimes lessons need to be shortened. Sometimes using art, music, technology will help engage a student learn. It is important to check in with the student to see if they are understanding. Comprehension of words and their meanings are very, very important. Teachers may have to teach new vocabulary first, before a lesson.

The student with autism may need help organizing, starting and stopping the assignment. Transitions are hard.

Children with less language, less comprehension may need to curriculum simplified. Teachers can pick one theme from the lesson and focus on it with a student. Teachers can find the most meaningful piece of the lesson and offer that to the student. Teachers can have the families read with the student the night before so they have heard the material before. Using pictures is so important to ensure comprehension. Asking the student what they saw after they read something is very helpful.

Some students need a very functional based curriculum.

2)How long will it take for someone with ASD to integrate into society? I think society must accept differences. No two people are alike. Some are more social than others. We must help people with autism understand the social rules. We must teach each social rule and explain its purpose. Then we must help our students practice it. We must find the parts of society that they feel comfortable integrating into. Not everyone integrates in every part of society. A child’s ability to integrate will depend upon their communication level, their social skills, their sensory levels and their anxiety levels. Noise & crowds will influence integration. Interests will determine integration. We must help society to understand and accept these amazing children with autism. We must be patient. We must find ways to help them lead a life with purpose and happiness and safety.

3)How can we tell when a child is ready for school? Children are ready when the school is ready for them. Children with autism require early education. The sooner they are supported to learn the better. The teacher must understand them. The school site must accept them. The education and home must work together. Perhaps the child needs a half day at first to get use the environment, routine and expectations. Perhaps the child needs speech therapy and occupational therapy to begin prior or at the same time to support school access. Will the school accept someone who isn’t toilet trained? Will they accept a student who needs frequent breaks and an adjusted curriculum? 

4)How to decrease self-injurious behavior or hurting others?   It is very important to make sure the child is not ill in any way (stomach ache, headaches tooth aches). It is very important that a child have a communication system to express frustration, confusion, anxiety. It is very important that the environment be structured and predictable for the child. It is very important that the diet be considered and that the child is getting enough sleep at night. All above must be reduced first. It is always important to look at the activities or people that seem to cause the self-injurious behaviors. What happens right before? Are you taking something away? Are you placing too many demands on the child? Hurting oneself is an expression of frustration or it can be trying to get out of doing something that is non-preferred and each time they self-jury they get out of doing that task. They will then continue. They have learned that if they self-jury, it gets them what they want. We must always remain calm and try to redirect.

When it comes to hurting someone else we must again find out what the motive is. What are they saying to you? (go away, no, I am confused, I am frustrated, I don’t understand, I need attention?).   We must give them another way to communicate these things. We must also not reinforce these behaviors when they occur. Structuring the environment is key. Building a communication system is key. Sleep, eating, exercise is very helpful. Having the student do meaningful lessons also helps.

5)What type of curriculum is good for a student in an inclusive environment? This depends on their level of academic ability, social levels, sensory challenges.   Some students can do the same curriculum with some accommodations. Some students need a functional based curriculum. Some students need more breaks when included. Some students need some additional support in one or more subjects.

6)How does one develop the IEP? There is a simple formula. Good assessments in all areas lead to strengths and challenges. A goal should then be written to address each challenge. Additional therapeutic support should be included to support sensory needs, executive functioning needs, communication needs, & fine motor & motor planning needs. The type of educational environment should be described in the IEP. Parent training should be in the IEP. Teacher education is important. Understanding of Autism should be considered as well. Academic support should be provided where needed. Behavioral support should be provided where needed.

7) What should be done by the school and teacher to help student who enters puberty? This is a sensitive area. The parents should really take the lead on this. They should meet with the teaching staff & explore beliefs & values & determine the best approach for helping this child. Just like any other child, this student will need help in understanding how his or her body is changing. Parents need to explain this. Teachers in secondary programs can help as well with parent permission. Social Stories are a good tool to explain how our body is changing. Sometimes doctors can help. Sometimes outside counselors can help. There are several great curriculums for helping all special needs learn about body changes.

 

Indonesia Reflections on my 2015 Visit

When I think of my time on Bali & Java, I am filled with the images of children, their families, their teachers & therapists smiling as they welcome suggestions, knowledge, ideas, & methods & above all hope. Yes, hope for their sons, daughters, students or clients with autism, ADD/ADHD, downs syndrome, cerebral palsy or some type of developmental learning challenge.

I first think of the smiles on our two wheel-chair bound children from YPK, as they held their soccer balls high in the air atop orange cones as their drivers got them as close to the soccer nets as possible so they could toss their balls into the goals. Wow, such huge smiles because they were outside on a soccer field with normal children while coaches (my sons) helped them go through a variety of soccer drills just like everyone else.

Next I remember the tears running down the face of Ibu (mother) Panji, whose son has autism, when she realized, during my workshop on “Siblings Matter Too”, that brothers & sisters of children with special needs will also require some special understanding & attention because their sibling has special needs. I realized that a second sadness was felt by Ibu Panji, first knowing that one of her sons would never do the typical things all normal children in Bali do & second that she must stay alert to the emotions of her other children.

I remember the laughs & giggles of the 275 participants at the IMPATI (Indonesia Autism Society) workshop I presented in Jakarta, Java on “Building A Curriculum for Students with Autism”, when I had all of them stand up, jump, shake, turn around, stretch, twist, take deep breaths every 30 minutes to demonstrate how important for children with special needs to also have breaks & to move if we wanted them to keep focused & engaged.

I will not forget the looks on the Sari Hati teachers & volunteers’ faces when I joined their group & was able to get the group of the most active kiddos with special needs all seated in a circle of chairs beating drums. They were so surprised to see that this one young child who never sits, was sitting in my lap indicating his desire to obtain deep pressure from my squeezing his hands, arms, shoulders & back. Kent was very happy to know that some children respond with deep pressure in a calming manner & when also pounding drums receive deep proprioceptive input which can be calming as well.

Then there were the smiles on the 4 special needs children, learning in Ibu Gusti’s center, who were so proud to show me their colorful drawings. I loved watching one little girl take pride in learning how to brush her hair & her teacher teaching her how important it is to care about her hygiene. I will remember our discussions on how to teach math in a meaningful way (making shopping lists, counting out needed items at the store and making change when purchasing). Next year I look forward to bringing a special writing program to the center to help improve handwriting.

I will cherish my time spent with founders, board members, directors & administrators of programs listening to their hopes, dreams & challenges & exploring solutions with them. I will remember their openness, caring, their hope for better futures for children with special needs & their honest intentions to do the best they can for children, families, staff & the community. I was happy to help people think about strategic planning instead of living only in the day. I was happy to help others think about learning from other programs on the island & showing a consistent presence in their centers so excellent modeling could occur. Finally, I was happy to connect resources that live on the island, to each other so that together greater things are possible.

I look forward to my next visit & bringing academic teaching strategies, special curriculums & information on specific topics to the teachers. I look forward to connecting more dots together on the island to build collaboration. I look forward to facilitating problem solving strategies with teams who truly want to make a difference in the lives of those who learn differently.

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.

Part of my work in Bali is to listen & help facilitate solutions to challenges & changes in administration, funding & training that the centers experience.

There is so much hope for the quick fix by the centers to help the child, the staff & the families, but with limited centralization of resources, insufficient funding, outside pressure of other countries providing support, the beliefs of Karma & the limited knowledge about disabilities, there is anything but a quick fix possible.

My frustration lies in the fact I am only here for a short time & what is needed is an extended period of time to observe, ask questions, listen, understand, explain, teach & clarify, support, celebrate & then repeat. To go SLOW.

Questions take time to process & culturally sound solutions designed:

  • How do we ask donors for more support
  • How do we teach teachers to educate children who lack focus & cannot learn in traditional ways
  • How do we help volunteers understand our philosophy & our children
  • How do we communicate with volunteers whose styles are so very different from ours
  • How do we obtain funds to bring training & education into our programs or hire our own Occupational Therapists & Speech Therapists
  • How do we write up specific job descriptions so expectations are clear
  • How do we change the beliefs of our families so they don’t feel this child is their punishment
  • How do we document best practices for a child
  • How do we change the mindset of the non-questioning & increase the action of creative problem solving.
  • How do we strategically plan for the next 2 or 3 years
  • How do we help our children leave our centers, graduate
  • How do we explain our leadership style & integrate or incorporate outside styles that might help
  • How do we say No to outside help that isn’t our way without offending

So, I listen & try to provide some small steps towards finding the solutions to their experiences. I suggest going slow to all. I suggest checking for understanding before moving on. I suggest making everything visual as well as auditory to help understanding. I suggest not being judgmental, to not destroy hope & to be honest & transparent.

I suggest developing stories of success to share with donors

I suggest sharing job descriptions with all & check for understanding

I suggest feeling confident in themselves & realize that saying no with sufficient reasons is appreciated by all

I suggest beginning to educate teachers & families on the causes of disabilities.

I suggest asking teachers or the children what they think instead of always telling them what to do will increase problem solving

I try to put centers together to learn from each other

I try to connect additional outside resources to the centers so they can help

I provide a simple format for a daily report for them to consider

I have the director imagine where they would like to go with a center

I suggest that they think about adult skills needed to be learned by their aging community & to think about developing self-esteem in their adults

I suggest that the leadership in the centers professional say to their outside helpers to explain how their style is confusing & to ask for reasons behind the expectations   I also suggest they not be afraid to say please slow down, lets prioritize what we should do & take our time in explaining, creating and implementing

Then I let go. I make myself available for questions & discussions & listening.

I was introduced to Sam in May this year at Offerings annual fundraising event. He was very interested in the work Offerings was doing in Indonesia with special needs, especially on the island of Bali. It appeared he had a good friend, Adrienne, who lived in Bali who was very interested in supporting the acceptance, education & advancement of children with deafness. Adrienne’s mother & father were deaf. Sam was sure the two of us should meet. I later learned that another friend of mine was interested in having me connect with someone she knew on the island of Bali. Sure enough it turned out to be the same Adrienne. Synchronicity!

Sam connected the two of us through email & it was set in motion that once I got to the island I would reach out & we would enjoy some great coffee & discuss our commonalities.

Our first meeting was non-stop getting to know each other in relation to our special interests. Three hours later we took a breath & decided we should meet again very soon.

That day I saw my life come full circle, remembering my favorite film, The Miracle Worker seen at age 10 & my first baby sitting experience with two deaf mute children, Barry & Susan, thinking I would become a teacher for the deaf but instead had opened schools for children with Autism. A detour for sure, but now I was faced with finding a way to help support deafness on the island of Bali. Isn’t life interesting?

I soon learned that there were a few schools for the deaf on the island in Jimbaran, Denpasar, Klungkung & Singarja. The main school a boarding school. I learned that about 60 students went to that school. I learned that there was a congenital recessive gene common the Balinese community, here before the Dutch colonized, responsible for the large numbers of children born with deafness.

Adrienne shared her frustrations with the lack of acceptance, education & job opportunities for children with deafness. She was very unhappy that teachers did not know sign-language & that there were not enough hearing aids for all. On one of the web sites discussing the deaf community in Bali it was noted that only 10% of those identified with deafness ever went to school and only one in 40 received a hearing aid.

I also learned that hearing aids here on Bali were best if they were an older model as repair work on the newer models wasn’t always possible due to lack of knowledge about maintenance.

Prior to meet Adrienne the 2nd time, I connected with my friends at YPK & learned that Yayasan Kemanusiaan Ibu Pertiwi (YKIP) helped get hearing aids to those in need. So during my second meeting with Adrienne, I connected her to my friends at YPK so together they could find solutions.

I am now very interested in finding out what is happening to these older model hearing aids in America & if perhaps there is a way to get them to the island of Bali if they are no longer of use.

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 Second Question Answered at Sari Hati

The Second Question Answered at Sari Hati

So, why do our children behave differently than we expect them to?

I first explained that our special needs children learn differently & that they may have communication challenges, sensory challenges, motor challenges & intelligence limitations. They may get frustrated more easily, confused more easily & anxious due to their learning challenges. Their brains may be different than typical children their ages.

Due to these differences we will see behaviors that are unexpected. It is then our job to determine why. Then to do something about the why & replace the behavior with a more expected action.

I then discussed that the behaviors they see (hitting, kicking, grabbing, running off, refusal, pinching, screaming) are all communication actions. These children may be telling you that they are: bored, tired, sick, angry, confused or anxious, frustrated or cannot handle all the sensory input they are receiving.

These behaviors are their words. So we must teach them a different communication system. (Use signs, use gestures (pointing) use pictures)

We must also organize & structure their learning environment to decrease their frustrations & confusion. It is best if materials & equipment are organized & put away in a specific space. It is best if there is a visual schedule for the children to know what is going to happen to them. For more involved children perhaps just two or three pictures on the schedule at first. For more involved children keeping their activities short & very fun & meaningful are also very important.

Children have less behaviors if they understand what is expected, if it is fun to them & if it is meaningful for them. If they are bored, if they do not understand what they must do, if it is meaningless to them or if they feel they will not succeed, they mya have behaviors (refuse, run off, throw things)

One of the hardest actions for these wonderful teachers in Bali is to say no to these children. I explained that in order for our children to learn we must give them both kinds of feedback (celebrate success & let them know when something is not right, not safe that they are doing). We must say “No or stop” & then show them a correct action.

I suggested they not laugh or show a great deal of energy when the child is doing something wrong, but to remain neutral & help them use their communication first to tell you what they need, want or don’t want & then to use a positive action.

If they throw something, they need to pick it up and return it. If they hit, grab or pinch they must apologize & teachers need to tell them they may not hurt someone. They may have to leave the area for a little awhile if the behavior is to continue.

It was very important for me to tell them it takes time to change behavior. They must get the families involved too. It is best that everyone try to do the same thing to change the behavior.

It is hard for these heartfelt teachers to do anything that leaves a child out or makes them sad. It will take time for them to try & to see that the child will still like or respect them & that the child will be okay.

 

 

Questions On Their Minds

It was an amazing day putting on a workshop at the Sari Hati Center in Ubud.

I have always believed that it is important that I ask what is needed at a center rather than tell someone what I think is needed.

I have always believed that it is important for me to observe, listen & ask many questions first to understand their children, their families & their teachers. It is also important to be flexible & to not be attached to what I may have planned.

I have tried very carefully to avoid judging, never to lie & never to destroy hope.

I have had the pleasure of getting to know the Sari Hati Center, with its heartfelt teachers & its caring founders. I deem it an honor to be asked each year to return to the center to answer questions, connect like minds & share my 40 years of experience building schools, supporting teams & finding answers to the complex learning challenges of children with special needs.

This trip the questions from Sari Hati reflected perfectly where they are & what they are ready to hear.

  1. What can we do with the materials we already have?
  2. How can we deal with behavior challenges?
  3. How can we keep activities Interesting?

I let them know that they have everything they need to teach their children right here at the Center. They just need their imagination, their creativity & to keep in mind that fun & meaningful can guide their choices.

I explained that all the activities that are needed to open, run & maintain the center can be used to teach & develop communication, motor planning, social, math & reading skills as well as respect, responsibility & independence to their children. (Washing windows, cleaning mats, wiping furniture, measuring objects, weeding, planting, counting students, teachers & modes of transportation)

I reminded them that they have yoga mats, drums, shakers, gamelans & art supplies that can develop motor skills, music & art skills, imitation & leadership & teach language concepts (fast, slow, loud, soft, high, low, first etc., counting & categories).

I modeled these activities for them with their drums & shakers & we practiced each being the leader & building imitation & language skills.

I explained how to set up a movie day, a talent show day & an art gallery day that could build social skills, presentation skills, communication skills & self-esteem in their children.

We discussed the need for the teachers to let go of taking care of everything for the children & to encourage them to acquire their own independence with guidance instead. (Meal preparation, cleaning up, getting materials they need for projects & hygiene)

We spoke about taking walks to increase communication understanding & communication expression. Naming trees & flowers or having them locate particular kinds of trees & flowers on the walks accomplishes this. I told them they might take pictures of these items & have the students talk about what they had seen on these walks when they returned to the Center. They could then draw them as well developing motor skills & art skills.

But the Questions Came!

What if the child does not want to join an activity? Should we make them?

What if the child won’t follow the directions for an activity & makes it hard for the project to be completed? Is it okay to tell them they may not participate?

What if they cannot tell us what they want?

What if they bite us or throw something or grab something?

Should we punish them if they will not take a shower?

Is it okay to teach them with an IPAD?

Then came my answers!

1)What if the child does not want to join an activity? Should we make them?

There are always more questions to ask before offering a solution. Here were mine.

Is the child shy or embarrassed to join?

Have they been taught the activity alone first to build confidence?

Is it too noisy in the room or too distractible in some way?

Are they afraid of something?

Is the session too long?

I explained that every child learns differently. Change is often hard for some. Not knowing the expectations can be anxiety provoking. Some do not want to fail. Others do not do group learning well.

Perhaps you might start teaching them in a smaller room, one on one, then one on two & help them succeed, I suggested Then gradually encourage their participation in a larger format.

If they still continue to resist perhaps finding something more aligned to their interest would be better first.

Have them do something fun first and the try something less preferred.

Then switch it around & ask them to do what is less preferred before something highly motivating.

The only time I believe we should force a child try or do something is if we feel it is key to their safety or development. If they must learn something in order to survive or be independent then a bit of kind insistence may be required.

2) What if a child will not follow the directions to complete a project the way it should be done & it is important for that project to be done in a particular manner. What if others have joined the project & then are following directions. Is it okay to tell the one child he may not participate? Is it okay that he is sad & I ignore that?

 I said It is very important to teach our children that there are rules & boundaries to respect. It is important that we teach our children to work together. As long as you have made sure the child clearly understands what is expected of the project & that you have given him warnings to follow rules, I feel it is okay to ask them to leave the activity & return when they feel they can follow the process. Perhaps it will have to be another day until they are ready to try. It is okay for them to be sad. It is a normal feeling & hopefully it will help them be more motivated to want to help in the right way next time.

3)What if a child cannot communicate with you? What if they hit, kick or grab?

All children communicate with you I said. They look at what they want. They reach for what they want, they may take your hand & show you want they want or they might point to what they want. That is communication. You must see it & acknowledge it & expand on it.

When a child looks at the cup of water, you say, “Oh you want water” & then have them point to it. Now you know what they want. Help them to  do this often & consistently.

You could take pictures of the water & have them match the water to the picture then learning that if they give you a picture of water they can also have the water they wish. Or you can show them the hand sign for water & have them imitate you & then you give them the water fter they sign it. This will take time & lots of practice to become a habit.

Then you will have to learn to wait. You will have to have patience. Once you know they can point, sign or give you a picture you must play dumb & say, (show me, tell me what you want). Waiting is hard but necessary if you want them to use communication.

Communication must be magical to them so they will be motivated to use it.

When a child throws something, grabs something, hits or kicks, they are communicating to you. I want attention, I am angry, I am bored, I don’t care about this etc.

You must be willing to use a caring "no" to them. They need to learn that what they are doing is not kind, nor safe & that it can hurt someone or something. They need yes feedback & no feedback to learn expected behaviors.

If they throw help them to retrieve & return it. If they grab from someone, let them know it is not theirs & help them return it. Hitting & kicking others should not be acceptable & they should be told to have safe, kind behavior & to stop. If they cannot, then helping them leave the area is a good idea.

They should receive your attention every time they are kind, cooperative & helpful but get very little attention for negative behaviors. Remain neutral. Do not laugh or have loud voices. Tell them “NO” & show them the positive behavior they should do. Guide them to do it.

4)Should we punish them if they will not take a shower?

Showering to me is a very private activity. It feels like this is a family discussion to have. Perhaps the center can meet with the family & discuss how this could happen at home in a timely manner each day. I would think we need to be sensitive to the feelings of our children when it comes to taking their clothes off, appearing naked & having cold water put on them. Perhaps teachers could start with smaller washings at the center (hands, feet, hands, arms, faces). Perhaps teachers could write stories with pictures for the children about being fresh & how that makes our teachers, families & friends happy to be with us.

5)Is it okay to just use an IPAD for teaching?

Some of our children seem to relate intensely to a computer device. They are motivated to work with it. So, why not use it, but not for all teaching & all day long. We must check for understanding when they are using devices. Do they really understand what they are reading or what they are watching? Do they understand the words they hear or see?

We must find education applications for the IPAD that teach subjects? We should help the child learn in a group as well & from real people. Children should learn by doing as well.

These were their questions today & it is my hope the answers helpful

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.

Seminar in Jakarta / Mayabada Hospital

I could hardly believe that there would be 275 guests at my first presentation in Jakarta. IMPATI, the Indonesian Autism Society, had made all the arrangements for a full day of learning at the Mayabada Hospital in Ang Boen Ing assembly room. They had informed me that about 150 guests would be there, but the day before the numbers had risen to 275.

Two full size screens were being loaded with my 4 part training on how to address the educational needs of children with Autism. A podium was set up on stage structuring my engagement with 275 guests hungry for any type of information that will help them teach their student, client or son or daughter with Autism.

Not me behind a podium like a statue, nope. I would feel much better moving across the stage, sitting on the edge connecting with my guests.

A short movie on IMPATI’s work in Indonesia bringing awareness. A welcome from the head of the development department at the hospital second, followed by a welcome from my friend, the president of IMPATI. Finally I was introduced & the stage was mine.

I remember hoping that I would be able to offer each of the 275 just one new idea or one piece of information that would help them. This I would be grateful for.

I introduced myself in a way that would help them understand my 40 years of experience. Then I found out what percentage of them were teachers, administrators, government guests, therapists or parents. I asked them all to identify what time they had gotten up (4am, 5am, 6am) & how they traveled (bus, train, motor bike) & from what distance. Many had risen early and traveled far.

I had them stand up, stretch, takes some deep breaths & then return to their seats, explaining that movement helps not only our students with Autism but us as well, stay alert & ready to learn.

The first power point explained special education levels in America (mild/moderate, moderate/sever), the types of classrooms offered & the teacher certification skills & process of assessing student levels.

The second power point shared curriculum areas (Language Arts, Math, Science, Health etc.) & objectives to reach in each area plus possible functional based ideas for meeting goal areas.

I also discussed understanding the sensory challenges of students & how to support in the classroom while implementing a curriculum.

I asked the entire group to close their eyes & stop all engaging with each other. I asked them to take several deep inhales & long exhales, keeping their eyes closed. We kept this up for about 5 minutes. The room was very quiet. Before I had them re-open their eyes I explained how much sensory information our eyes take in & our brain identifies & by just closing our eyes once in a while we can reduce the sensory overloading & offer us some calmness to ourselves, our teams & our children.

During the 2nd half of the day, I opened the seminar up to questions. Any participant could feel free to ask any question. These were their questions. In future blogs I will provide my answers.

  1. Will using a voice device stop my son from learning to be verbal?
  2. How can we help our student to stop touching himself & others inappropriately?
  3. How can I teach my son to ask questions?
  4. How can we develop or son’s talents?
  5. How can we teach our students about puberty?
  6. How can I develop a home program?
  7. How can we expand our son’s Math skills? He only counts to 10.
  8. How can we expand our son’s eating? He only eats dry things.
  9. If our genetics is part of the reason for our son’s Autism, what can we do?
  10. How can I expand my son’s communication? He just leads me to what he wants.

In the final hour & half together we discussed how to reduce behavior challenges & how to develop a social story to increase comprehension or change a behavior.

I believe that each person that day walked away with at least one new piece of information to help them.  I know that I walked away with new information that would help me continuing my work.

Today I had the privilege to re-unite with the children, the staff & the founder of Sari Haiti. It had been a year since we last connected. I was overwhelmed by the smiles & hugs & hellos” Ibu Karen” from the teachers & volunteers. It’s an amazing feeling to be accepted & valued.

The more active, cognitively & communicatively challenged children were in a secure space with several staff. I was encouraged to come in & join their attempts to keep the children engaged. First, a bit of Hokey Pokey Balinese style & the children realized my white hair did not mean in active. I positioned myself in the circle & a young boy, I’d say around 7, immediately chose me as his partner. I supported his body movements during the activity, helping him choose the correct body part (arm, leg, head, & whole -body) to use & he became a very cooperative participant, until the activity seemed to end with no directive insight. He then started jumping up & down indicating the need for input.

I looked into the faces of the staff & asked what was next on the schedule, as I jumped with my little friend, counting each jump to teach quantity.  “Help us Ibu Karen”, they requested & so I asked for instruments, drums perhaps to facilitate the next potential activity. I also asked that we create a circle with chairs & encouraged the staff to have their children sit with their drums. I wanted to create some structure the children could relate to.

First engagement: I used the drums to set a pattern they could repeat. One tap, Pause & the verbalization Satu, (Balinese for one) then repeated the pattern over &over again until children imitated. Two taps, Pause & the verbalization Duo (two in Balinese) once again repeated over & over again until limitation occurred. Three taps, Tiga & a pause (Balinese for three for the finale).

Second engagement: I use speed & location of the drum to add variation. The children loved this change. They stayed seated & tapped fast & slow, then high & then low & finally left & then right.

At this point another student decided I should be his partner. This 8 year old needed a great deal of help to stay seated & to interact with the drum. I found that giving him deep pressure (squeezes) kept him in the chair requesting more input from me (when I stopped he reached for my hands & put them on his arms, shoulders or head). The staff were surprised to see this little guy stay in the circle for several minutes.

Third engagement: Maintaining a simple one beat pattern, I said the following “Ibu Karen says dog & then I barked like a dog. There were giggles & smiles & imitations from the staff & then children. I encouraged each staff to join me & say their name, an animal & the sound of that animal & encourage imitation. Three staff followed my lead & then it was clear to me a big change was needed.

I suggested, shoes on & a walk outside. The suggestion was welcomed by all.

My little guy remained with me as long as I provided this deep pressure to him. It allowed me the opportunity to give the teachers a little explanation about how children with Autism, ADHD & frequently Downs Syndrome can need pressure input in their body to remain calm & engaged in an activity.

Yep, I told them, a little bit of hugging goes a long way!!!

Does my little boy really have Autism?

My niece & I were invited to visit a center in Bogor for children with Autism. The founders had set up classroom space, a space for a garden, areas for bike riding, a space to do laundry & a dark hidden space for raising mushrooms that they would later sell. I had met the founders the year before & we talked about the importance of teaching independent living skills & using a garden to teach math & science concepts. They had taken those ideas to heart & started to implement them.

As we sat in the director’s office, Pak Mus explained to me that a family member of his would be stopping by with her toddler. It appeared that she lived on another island & had been told her little boy was a child with autism. She had heard that I was coming to the island & that I had experience with children with autism. She wanted to know what I thought.

The child & his mom & grandmother arrived moments later. The child was absolutely beautiful but his eyes did not scan the room or connect with any of us. He started climbing on everything, the higher he could get the better he seemed to like it. He was just under two years old. He did not explore the room looking for toys to engage with. He did not respond to anyone’s greetings. He seemed to stare away from our faces even when we were up close.

He picked up some pens on the table, I took his hand & showed him what would happen if I traced his finders & then his feet. I made marks on the paper to see if he would connect the marks to me, to the pen to himself. While he appeared engaged for the moment there was no joint attention.

He started to crawl around on the floor & all of a sudden he was really interested with my toes. I had flip/flops on so they were very accessible. As he touched one, I lifted it & set it down. He smiled. We had several rounds of pressing toes up and down & him occasionally looking at me. I think I had the beginning of some joint attention, but it only lasted for a short moment.

My niece also tried to interact with this little guy & while he allowed her to pick him up & sit next to her in the van, there was very little reciprocal back & forth going on.

He had no language, no gestures, no play & no sustained eye contact.  

I explained to his mom that he did have some of the characteristics of children with autism & that it was very important for her to find a knowledgeable speech therapist & occupational therapist to start working with him when she returned to her island. I let her know that he really needs to get involved with learning how to play with toys & others.

This little guy’s mom attended the two day workshop we presented the following two days to understand more about her son’s learning needs & to find a connection with other families.

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.

The Autism School; No Judgement, Be Honest, Do Not Destroy Hope

No Judgement, Never Destroy Hope, Be Honest

These were my mantras each time I found myself on the islands of Bali & Java

Yuni had scheduled a visit to the Autism School in Denpasar on my third trip to Bali. The school Director had invited me to meet her team & hold some discussions on autism with them. School was apparently not in session that day, so the children were in their villages. Yuni, the school director of YPK, her Supervisor, the Director of YPK, Sharon, the Occupational Therapist at YPK and my niece, who was traveling with me in her capacity as a regular education teacher with her Masters’ Degree in Special Education were held up in a bit of traffic that morning & arrived a few minutes after our expected time.

We were all surprised at the reception that had been planned. A line composed of school director, her team and several dignitaries from the Village were waiting to greet us. I was then told that the children had been brought on site for the day for me to see, as well as approximately 60 parents & village members to ask me questions.

I asked to take a quick tour of the school to familiarize myself with their environment before being put on stage for quesstioning. Classrooms, small therapy rooms & a few large assembly & office spaces supported the program. All the students that day were in one room, waiting.

I was a bit concerned about the fact that 30 plus children with Autism would be in ONE! Room waiting, so I advised my group to wait outside the door while I ventured in. I scanned the room very quickly & noticed a variety of children, some with Downs, a few with physical challenges & others surely with some cognitive issues, sensory issues & from my own experience Autism.

A few of the children were experiencing some anxieties & engaging in some behaviors that I felt were due to the limited space they were in, the unstructured time they were experiencing & the change in their expectations for the day. I suggested to my host that we move on & that the children continue in some type of regular structure they had expected. (BE Honest)

I then was asked to observe a speech therapy session with a 17 year old non-verbal student with Autism. The therapist appeared to be using an oral motor approach to teach him to speak. I did not see any type of alternative system (pictures, sign, or technology) within the session   (NO Judgement). The young man was cooperative & really trying to please the therapist. It was apparent to me, a speech & language therapist by training, that this student could benefit from some alternative communication systems to help him express his needs, wants & refusals.

I was then led to one of the larger assembly rooms & asked to speak from a stage. I requested that I be allowed to set a discussion with less formal spacing & to sit more closely to the families & professionals. I spent the next hour or so with legs hung over the stage rim much more connected.

“What medication cures Autism?” was my first question from a father whose 8 year old son had autism (Be honest, Don’t destroy hope). “A great deal of research is being done right now, exploring the potential of medication to help our children, but at this moment there is no medication that has been found to cure. We have some types of medication that can lessen some of the anxieties, help with sleep & decrease aggressive behaviors,” that was my answer.

“Is it okay for me to throw my son in water when he has a tantrum?” was another question asked by a struggling mom with a son with autism. (Be honest, Do not judge)   My first response to this mom, who had stood up in front of her village with such courage, was to ask her a series of questions so I could help her find another solution before resorting to throwing her son into some type of water. I wanted to see why the tantrum occurred & provide other strategies before the meltdown could occur. Then I asked if her son enjoyed the water & explained that some children are calmed by the deep pressure of water while others are fearful & could see the water as a punishment. WOW!

I was asked to describe Autism & also to comment on whether I thought children with Downs Syndrome could be educated in the same school. (Be Honest, Do not Give Up Hope, Do Not Judge)

I provided characteristics but provided ways to help as I described Autism. I talk about the similarities between Autism and Downs but also described the differences in supports needed.

Once the Villagers left & the children, we spent another period of time with the teachers talking about visual strategies & the difference between just pointing to a picture & using it to truly communicate.

It was an amazing experience for me, learning to listen, valuing & providing hopeful feedback.