On the Road With Autism

My journey of discovery. I welcome your comments!



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.

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

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!!!