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Children are like Fingers-Each One is Different

Today, our focus was on the functions of behavior and on helping teachers and families understand children’s behavior.

Parents did an excellent job of identifying challenging behaviors and discussing how to address them. Tala’s mother shared that when her daughter wants to get out of a situation, she will break things. When hearing that the function of this behavior is to escape, Oli’s mother told Tala’s mother that she should make Tala pick everything up when she breaks things so that she learns that she can’t break things when she wants to get out of something. When other parents mentioned that their children also break things sometimes, but for different reasons, Oli’s mother responded by saying: “Children are like our fingers. Just like our fingers are all different from one another, our children are all different. They have different behaviors and the reasons they do them can be different too.”

One common behavior that we have seen in Hartha is that children cry when they want money from their parents to buy things at the store. The parents get annoyed and give them the money. While our teachers and parents all said that they do not do this (one said she lets her child cry until she falls asleep or forgets and another stays firm saying that “you bought something already and can’t buy anything else,” they were quick to identify that giving the child who was crying the money they wanted would teach them to cry the next time they wanted money.

During the conversation, the group started discussing the strengths of people with autism. One mother shared that she believes that children with autism are very smart and another teacher noted that some children with autism have special talents. We were excited to see parents taking pride in their children’s skills and to see teachers’ supportive affirmations of the parents’ observations.

After discussing behaviors, we taught the group about the ABC data collection method, which can be used to help parents and teachers identify the functions of behaviors. This strategy focuses on a particular behavior and has the observer take data on the antecedent (what happens right before) and the consequence (what happens right after) that particular behavior. We went over an example for a child yelling and screaming. One mother identified that a possible antecedent could be: The child’s siblings went to buy something at the supermarket but he was forced to stay home. Another mother noted that the consequence in this situation might be the mother telling the child that she will take the child to the supermarket later.

A: Other kids went to the supermarket and left one child behind

B: Child who was left behind yells and screams

C: Mother tells the child who was left behind that she will take him to the supermarket later

Can you tell us what this child might do next time he wants to go to the supermarket?

Later in the training, we discussed scripting behavior. One mother (OAO) shared that her son always used to script (repeat) the things he heard on CNN. Her husband addressed this by engaging her son in a conversation and redirecting him from the scripting behavior. Dana offered some additional examples of ways that a parent could intervene when this behavior is preventing learning or social engagement.

When discussing antecedents to behaviors, we discussed changes to the environment that can decrease the likelihood that a behavior occurs. Oli’s mother mentioned switching schools, traveling and moving houses as some ways that changes in environment can affect behavior. We have a number of families who have had significant changes in their lives recently and hope that reflecting on some of these changes might lend some insights into their children’s behaviors.

We look forward to starting cooperative sessions later this week.

-Melissa

 

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Hide and Seek and Seeking Support Priorities

Another day full of intakes. The team saw five children for assessments today! We are having so much fun during play assessments that it hardly feels like we are working. Our wonderful center is large enough to accommodate several families at a time. At one point, there was a big game of hide-n-seek happening with team members, children, and parents involved.

After work today we came home to eat a quick dinner of vegetable rice and to work some more on preparations for our first cooperative training for parents and teachers tomorrow morning. We reviewed our “What is Autism?” Training and made sure it was up to date and relevant for both parents and teachers in our audience tomorrow.

After work, we were invited to visit a community member’s house to meet the family and have some juice and coffee. We were treated to some delicious strawberry juice and a breathtaking view. The family lives on a hill at the edge of town and they can see both Syria and Jordan in the distance. As the sun set, you could see that the left half of the sky (Jordan) was lit up and twinkling with electric lights while the right side of the horizon (Syria) was completely dark. The lights and villages that used to be there are gone.

Now we are back at the team house and headed to sleep.

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Training Day 1-What Is Autism?

We had a wonderful day today at our first parent and teacher cooperative training. We had a great turn-out and our audience was very engaged and asked thoughtful and astute questions. As we reviewed a slide talking about the hypothesized causes of autism, our parents and educators asked many questions about things they have heard that cause autism and things they have heard that cure autism.

Parents and teachers learning about the causes of autism at our first parent and teacher training.

We at AGVFA want to make it clear for them and for you, dear reader, AUTISM IS NOT THE PARENT’S FAULT. Autism is a complex diagnosis. Research suggests that there is a combination of genetic and environmental factors at play. Research has shown that television doesn’t cause autism. Research has shown that vaccines don’t cause autism. Research has shown that eating a diet containing gluten does not cause autism.

 

We loved discussing these misconceptions with our participants today. We hope that as we dispel these rumors, parents and teachers can move forward and stop searching for something to blame for an autism diagnosis and focus on their child/student’s strengths and talents. We believe every child is a gift with great potential to learn and grow and change the world for the better. We think our participants agree with us!

 

To better help our participants understand how it might feel to have a speech delay, we played a game during our training. People were split in to groups of two and asked to convey a message to their partner without writing or speaking. Messages ranged from simple, “I am hungry” to more complex, “I want to go to the park and swing and on the way home I want to buy a chocolate ice cream”. The frustration and confusion people felt while trying to understand messages gives us a small insight in to what people with autism or speech delay may feel all day every day.
This weekend we are working hard to prepare for our next training on Sunday. Have a great weekend everyone!

-Christina

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Bombs, Bugs and a Busy Day

Last night our sleep was fitful as the bombings over the border were fierce. Our house shook and the horizon was orange and red with fire. Our hearts break for the people affected or displaced by the violence in Syria.

Bombs as seen from our rooftop last night at 2 in the morning.

Our teammate Dana found that a new housemate had moved in overnight. A large cockroach had taken up residence in our bathroom and had to be politely escorted out. No more housemates!

Today was a full, full day. We did intakes for four new families and saw another family for additional intake activities. It is so great to see how more families are coming to our program as the community gets to know us and learns about our mission.

During one intake today, a mother told us that she hopes that everyone in her community will remember that, “All children can learn and heal and grow. Nothing is permanent.” We love hearing the wisdom of the mothers we work with. I’m sure we will learn so much from them this summer.

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“If You’ve Met One Person with Autism…”

As our Board Member Stephen Shore famously said, “If you’ve met one person with autism, you’ve met one person with autism.” Our intakes today are proof of this statement.

This morning, we started with a meeting with a family that included two young adult women with cognitive delays. When we asked the women about their own goals, one expressed her interest in developing sewing skills so that she can work as a tailor in the future. Her mother also noted that she wanted her daughters to learn to read so that, if they get lost, the can identify the buses and street signs that will take them back home. One of the women also told us that she loved drawing and drew us some beautiful pictures as she waited for her mother to finish her intake forms. Although the young people in this family are older than those we typically support, our team is committed to helping their mother teach them basic literacy and safety skills, as well as processes for breaking down new skills like sewing that their mother might want to teach.

After that, we met with a mother and father, and their two sons, one of whom has cognitive delays at birth and some symptoms of autism. There were many questions related to whether their is a cure for autism, and we explained to the parents that, while autism is something that is lifelong, there are many skills that they can teach their son so that he can become more independent and participate in the community.

Our third intake today involved the only parent who used the word autism to explain her daughter’s diagnosis. Many families here avoid using this word, even when their children have received an explicit diagnosis from a doctor. We respect the terminology each family wants to use, but this mother insisted, “I want to help my daughter as much as possible because my goal is for her to life a full life. I am not afraid to tell you anything and will share all of the details with you.” Some of the mother’s main goals for her daughter involved developing communication skills. Her daughter already has some great play skills and we are excited to continue to work with this family (and all of the families!)

We still have a few slots left in the program and if you know anyone in Northern Jordan who is in need of autism training and support, please get in touch!

Intake forms for Global Voice family intakes.

-Melissa

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Scorpions, Figs and Autism…Oh My!

We had a big day today full of excitement and surprises. Upon arriving to the center bright and early this morning, we had two surprises waiting for us. The first – was a large, black scorpion in the hallway.

A scorpion applied for admission to our program today. Unfortunately, we had to inform him that we are not accepting applications from scorpions at this time.

We politely told him we were not accepting teacher applications from scorpions at this time. Just kidding, we removed him quickly! No scorpions are allowed in the center- ever!

The second surprise was much nicer. Essam brought us a large box of figs and we all ate our weight in tasty figs while we had our morning meetings.

Figs from the trees in our village. Did you know that there’s a dead wasp inside every fig?

Later, We did intake interviews with some excellent teachers. During one intake, a teacher told us that she wanted to participate in our program and help her community understand that, “Autism is not a disease and is nothing to be ashamed of. These children are smart and creative and have lots to offer their communities.” We couldn’t agree more.

We finished the day with a traditional Jordanian lunch of stuffed grape leaves and now we are all headed back to the house to work on individual projects. Happy weekend everyone!

Grape leaves and zucchini stuffed with rice (known here as Dawali and Mahshi) at a local family’s home.

-Christina

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It’s Wednesday Already!

With such a busy week, we barely realized that our first week is almost over. It’s been a successful week overall. We had great results at yesterday’s community lecture and parent intakes. Through pre and post tests, we saw that 100% of community lecture attendees learned something they did not know about autism before the lecture. Two of the most common learning points were that parents don’t cause their children to have autism and that all children with autism can learn to communicate. It makes us happy to see the community show interest in the cause. Their interest was evident when attendees’ neighbors and relatives showed up for intakes today!

Our second day of teacher and parent intakes went quite well. We had teachers come down from Irbid and neighboring villages all eager to participate in the training.

The team gathered at the training center to prepare and brainstorm ways to make the intakes more efficient. We started interviewing teachers. Some of the teachers have great insights on autism and are keen on learning more about it to better help the students and community. It’s always wonderful to meet teachers who are passionate about learning and enhancing their knowledge. Some teachers did not know a lot about autism but are looking forward to acquiring knowledge to better assist the students and the community. One common interest between all the teachers we met today is to have the community accept autism, rather than see it as something to be ashamed of. As a team this is the message we aim to deliver to the teachers and the community here in Northern Jordan.

It was a long day and none of us felt like cooking today. I stumbled upon a local bakery near our training center that had some fresh and delicious pastries. This bakery will be a lifesaver in the future, as we will have busier schedules.

-Dana

 

About

There’s Nothing Better than Community

After three days of intensive preparations, we began our family intakes this morning. Two families came to discuss their experiences and the behaviors of their children with autism and both families are excited for the start of the program. Both families brought two caregivers and we had the opportunity to speak with each caregiver separately to check for consistency in reports about child behavior and home life. We found some impressive similarities and striking differences, but above all, we were impressed by the concrete goals that the families had for their children.

A child from the community plays with Mr. Potato Head’s glasses during a community session.

One mother reported that, above all, her goal is for her child to speak. She shared with us that her child’s autism diagnosis led her community to gossip about her and to laugh at her when she walked through the streets of her village. She shared with us that, although she felt ashamed, she loves her son more than anything and will always but him before anything the community says. Another family wants their son to learn self-defense skills so that he can go out in the community on his own safely.

A child plays with his father’s phone during an intake interview.

While the parents had their intake interviews, the children played with toys (and with each other!) in the training room. Team members had the opportunity to observe their behaviors and to note children’s strengths and challenges. One child, a four year old boy, was shy at first but was laughing and knocking over blocks within minutes. Even his mother was surprised by how quickly he warmed up to the team!

We were surprised that only two families attended the intakes in the morning. After speaking with a number of community contacts and the families that RSVP’ed but did not attend, we were confronted with the reality that the autism stigma in this community is so great that leaving home to attend an autism program is a step that many families are not yet ready for. Because of this realization, we held a community lecture this afternoon. The goal of the lecture was to teach community members basic information about autism and to encourage them to speak to their friends and neighbors about our program to encourage the families (who we know are here) to leave their homes and attend the program.

A Global Voice for Autism community lecture presentation for members of the Northern Jordan community.

At 2:15 we were worried that no one was going to attend. By 2:30 we were overwhelmed! Every person we have met so far in the community showed up to attend our lecture and learn about autism! Participants asked great questions and especially enjoyed playing a game that involved communicating a secret message to a partner without speaking. The best part was when our Syrian local coordinator conveyed the message “I love my wife” and made her guess his message.

Community lecture attendees learn myths and facts about autism.

We were all exhausted and excited at the end of the day. After reviewing the intakes and reflecting on what went well and what we can improve (see below), two of our team members fell asleep on our front porch while I spent some time cooking and practicing Arabic with a local family. Now if you ask me, that’s the sign of a full and productive day!

Team members young and old (PC: Essam-not pictured) gather for a photo at the end of the day.

What went well:

-The team quickly built strong rapport with the families and families expressed feeling happy and comfortable in our space.

-Differences in caregiver survey responses gave us key things to look for and offered us insight into families’ lives.

-Community lecture attendees were engaged throughout the lecture, asked great questions and communicated plans to speak to neighbors about the program.

To Improve:

-Smooth out the intake schedule so that families don’t have long wait times (we’re expecting more families tomorrow!).

-Have a separate room for kids during community lectures and only bring the kids in for activities with the parents.

-Bring snacks and drinks for the families and make sure that there is cold water available on site.

-Put flyers about the program in doctors’ offices so that the doctors can refer and encourage more families to attend.

-Melissa

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Review, Practice, Repeat

The theme of today’s activities has been “review, practice and repeat”.

The team has been hard at work reviewing our trainings and modifying them to better fit the needs of the local population. All our trainings are also being reviewed by the international team to ensure that they reflect the most current research in the fast-paced field of ABA. We have been practicing our presentations to ensure that they are clear, concise and attainable for the families we are serving.

(The team reviewing and preparing intake forms and the “What is Autism?” training for our intakes and community lecture tomorrow.)

In addition, our Arabic speakers are practicing interpreting our trainings to make them as clear and easy to understand as possible. We have also had to repeat several things today when meeting with our team psychologist and introducing ourselves to her. Most notably, our team member, Dana, got to say, “My name is Dana!” over and over while the internet connection played tricks on us all. The activity in Syria has made our internet connection quite weak and repetition has become our standard practice. The team is brainstorming ways to work around our internet connectivity issues. We are all excited to provide our first community training tomorrow.

(Smoke from explosions in Syria that can be seen in Irbid)

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Unicorns, Gorillas, Crocodiles and Mermaids!

It was a busy day! In spite of some jet lag, we all managed to wake up early to get started in our first day of orientation. My favorite activity was the first one we did, the “Unicorn on Your Head” game. Yes, we came all the way here to discuss unicorns!

(Dana telling a 4-minute story about the mermaid in our refrigerator)

As a group activity each team member was given a prompt and had to tell an improvised story on the topic non-stop for 4 minutes. I enjoyed listening to Christina’s improvised story about the unicorn on Chahinez’s head (in memory of the Mersin team’s unicorn mascot). I told a story about a mermaid in our fridge, which happens to be one of my favorite fictional characters. Chahinez told a story about how she loves the movie King Kong but is scared of gorillas. She managed to deal with the gorilla in our ceiling and created a love story for it. Christina is scared of crocodiles but Melissa also managed to deal with the crocodile in our bathroom and have it deported back to the United States to deliver molokheya (local vegetable).

(Christina telling a 4-minute story about the unicorn on Chahinez’s head. As part of the exercise, each team member had to speak about her prompt for 4 minutes without stopping)

 

We had some laughs about our improvised stories, which helped us get to know each other as a team and then reflected on how telling these stories prepared us for the upcoming trainings. Some things that we noticed were that we perceived our teammates as being confident even when they didn’t feel confident and that we stayed engaged in each of the stories and we were more critical of ourselves than of others. 

 

After discussing unicorns and mermaids we moved to two different activities. As part of the second activity Christina spoke to us in Italian and Chahinez spoke in Algerian Arabic. Most of us did not understand the languages spoken but we connected to the team member through body language, gestures and vocal intonations. I find our team interesting as we all come from different cultures and speak different languages but our passion towards autism is the common language and a strong tie amongst us.

(Chahinez sharing a story about her “best idea ever” in Algerian Arabic. Team members were instructed to walk toward her when they felt engaged and to stand still when they were bored.)

I am excited to think that each one of us will learn a new language and some amazing recipes from our team members. We are all living together and have the opportunity to learn constantly about each other’s cultures and experiences. They say too many cooks spoil the broth but not in our team. It’s been nice seeing each team member contribute in cooking our meals making unique recipes that involve all our cultures in one dish and we still did not spoil the broth (Yet!!)

-Dana