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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

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Welcome to Jordan!

The global team from Canada, the USA and Algeria has finally arrived in Jordan. We’ve unpacked and are very excited to start this journey.

After a great traditional Syrian breakfast made with homegrown vegetables and fruits at a local family’s house, we had an orientation session where we got to know each other through some fun activities. One of the things that impressed me the most was learning about our local coordinator, Essam’s artistic talents.

(Traditional Syrian breakfast with a local family)

We shared stories about ourselves and our experiences in this field. It was a wonderful start and I already feel connected to the team. We are all here for the same reason–trying to help children with autism and their families get the support they need to participate in their community.

(Getting to know each other through an image description activity designed by local children)

The community where we are staying in northern Jordan is beautiful and friendly. Even people who don’t know us invite us to their homes for cups of tea or coffee. I am amazed by the generosity and hospitality and feel lucky to be here.

-Chahinez

 

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Ready, Set…Go!

We are excited to announce that our northern Jordan program is officially getting started. Over the next three months, we have a great global team on the ground with us in northern Jordan, training families and teachers in evidence-based practices for autism support and inclusive education, equipping participants with support and self-care practices, and connecting with a welcoming and enthusiastic community near the Jordan-Syria border. Starting next week, we will have daily updates to share on our blog. In the meantime, with the help of some of our favorite local volunteers/artists, we are excited to introduce you to the northern Jordan team!

Melissa Diamond, Executive Director

Melissa is the Executive Director of A Global Voice for Autism and is joining the northern Jordan team to supervise and launch the program site. Melissa has overseen the growth of A Global Voice for Autism from a single project to nine program sites and four project sites worldwide. Melissa is a Rotary Peace Fellow and holds a Masters degree in Conflict, Security and Development from the University of Bradford. She has been actively involved with the community in northern Jordan over the past five years on both personal and professional levels and looks forward to working with the community to support families of children with autism.

Essam Obeidat, Local Coordinator

Essam Obeidat is a Jordanian father of a son with autism and a strong advocate for the acceptance and inclusion of people with autism in his community. Essam works as a photographer and graphic designer from the Ministry of Education and his recognized for both his artistic abilities and humanitarian efforts in his community. Essam brings extensive experience organizing initiatives in Jordan and is a leader and inspiration to other autism families in his community.

Christina Schoch, BCBA

Christina is a BCBA who will be joining us from Miami, Florida. Christina has been working with individuals with intellectual disabilities since 2001. She started working at a group home for children with severe behavioral issues. From there, Christina pursued a career in applied behavior analysis and was awarded her Masters in 2011. She passed the BCBA exam that same year and has been working with children on the autism spectrum ever since. She has lived in Naples, Italy and currently lives in Miami with her husband Jason, her son CJ (who will be joining us in Jordan!) and two German Shepherds.

Dana Ghresi, RBT

Dana is a Jordanian-Canadian Registered Behavior Technician (RBT) who is joining our team from Dubai. Dana has experience conducting skills assessments and implementing individualized plans for the individuals she serves. She graduated with a Bachelor of Arts in Psychology and a minor in Sociology from the University of Western Ontario in Canada and an Autism and Behavioral Science certificate from Algonquin College in Canada. She has been working as a behavior therapist for the past three years, delivering sessions and support in homes, schools and centers. 

Susan Ainsleigh, BCBA (Virtual Support Consulting Lead)

Susan is a Board Certified Behavior Analyst who will be joining our team from Massachusetts in August to facilitate participants’ transition in to the Virtual Support Consulting program. Susan is a special education teacher and BCBA who brings more than 25 years’ experience as a teacher, therapist, supervisor, director and trainer. She currently teaches full time at Bay Path University and consults for programs and families across the Middle East on autism-related topics. Susan founded the ABA Division at the Jeddah Institute for Speech and Hearing in Jeddah, Saudi Arabia, where she lived and worked for 8 years. She now lives outside of Boston with her husband, Terry. She is excited to be a part of this project and to bring services to families in need.

Chahinez Bouazza, Monitoring and Evaluation

Chahinez is a medical doctor from Algiers, Algeria with extensive experience designing, implementing and evaluating program efficacy and identifying areas for improvement. In addition to her work in the medical field, Chahinez is the co-founder of Effet Papillon, Algeria’s first personal development organization. The organization supports students and teachers throughout the country in their personal development and partnered with A Global Voice for Autism for the launch of the Innovative Teachers Academy in 2016. Chahinez will be assisting with data collection, family intakes and program evaluation to ensure that the program is as effective as possible in the northern Jordan community.

 

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War, Peace and Autism: What Does Supporting People with Disabilities have to do with Peace?

We’re bringing our blog back in preparation for the launch of our new program site in Turkey. To get started, we’re excited to bring you some questions from our supporters.

Today’s question is:

“Your organization supports children with autism and trauma-affected children in conflict-affected communities. Why do you specifically work in conflict-affected areas? What does this have to do with peace?”

-Anonymous, USA

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Where do we even begin to answer this important question?

On a practical level, conflict often destroys core services within communities and prevents the development of new services and programs to support the population due to violence, limited resources and reduced governance and civil society capacities. This means that even communities that once had services for children with disabilities often lose these services or have their ability to operate significantly impaired. Conflict also limits access to training. In one community in Syria where we support families through our Virtual Support Program, the international professionals who previously supervised the center no longer have access to the community. Because many families lost their livelihoods in the war, the center could no longer afford its international support and was soon forced to shut down due to a lack of resources.

When we work in these communities, we put the capacity directly in the hands of the stakeholders in the lives of children with autism and behavioral challenges. When parents and teachers have the skills to support the children whose lives they are invested in, many of these barriers to accessing support and learning are removed.

But now on a deeper level…Why does it matter?

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Peace is more than just the absence of violence in a community. A society is not truly at peace until it respects and values every individual within the community. Communities that do not value the rights of people with disabilities live with a mindset that some lives are worth more than others, and such a mentality is a slippery slope into direct violence against populations and communities.

On the contrary, supporting children with autism is an opportunity to bring communities together. By uniting parents, teachers and children from diverse ethnic, political and religious backgrounds around a common cause, our programs not only improve societies’ value of people with disabilities, but also change the way they value each other. With our without autism, we are more alike than different, and our families and teachers prove this to us and to their communities time and time again.

In a world riddled with violence, conflict and discrimination, our teams, teachers and families are choosing love, peace and hope every day.

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Amjed hugs his teacher, Rana G. during a cooperative support session in Mersin, Turkey. Since the completion of our initial training in Mersin, Amjed, his mother, and his teachers Rula and Rana have been meeting weekly for cooperative practice sessions where they are helping Amjed with his language skills and and supporting each other as they work toward autism acceptance in their community.

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Exam Week!

It’s exam week at our Mersin program site and our teachers and parents are hard at work showing off all they’ve learned over the past 12 weeks. From dispelling beliefs that parents are to blame for a child’s autism to discovering functions of behavior to teaching new academic and independent living skills, this group has covered the spectrum of evidence-based practices for autism interventions.

Curious to find out how you would do on our final exam? Check out a few sample questions below:

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SAMPLE QUESTION 1:

Autism is:

    1. A disease caused by showing a child too much TV
    2. A sickness that can be cured, like a cold or the flu
    3. A lifelong neurological disorder associated with difficulty socializing and communicating
    4. An illness you can “catch” from others that causes restrictive and repetitive behaviors
    5. All of the above
    6. None of the above

 

SAMPLE QUESTION 2:

Rama is a first grade teacher with a classroom of 45 children. Rama has a child in her class who she suspects has autism. Which of the following can Rama NOT do?

    1. Tell the child’s parents that their child has autism (provide a diagnosis)
    2. Use visual strategies to help the child participate in her classroom
    3. Let the child’s parents know that she has noticed autism symptoms in the child and suggest that the parents take the child to a trained doctor
    4. Stop instances of bullying if she sees them in her classroom
    5. All of the above
    6. None of the above

 

SAMPLE QUESTION 3:

Amjed does not use words to communicate but has started pointing to a bottle of bubbles in order to get his mother to blow the bubbles. Amjed makes some sounds and his mother’s goal is to teach him to make verbal requests. What is the next step his mother should take when teaching him?

    1. Say the word “bubbles” whenever Amjed points to the bottle, but continue to blow the bubbles whenever Amjed points to the bottle
    2. Stop giving Amjed bubbles when he points and require that Amjed say the full word “bubbles” in order to get the bubbles
    3. Stop giving Amjed bubbles when he just points and start requiring that Amjed make a sound in order to get the bubbles
    4. Continue giving Amjed bubbles when he points to them and focus on getting Amjed to verbally request something else he likes
    5. None of the above

 

SAMPLE QUESTION 4:

Which of the following is a TRUE statement?

    1. You can break any skill into smaller teachable steps and teach one step at a time until a child catches on
    2. Anything a child feels is a behavior
    3. Some children with autism are incapable of communicating
    4. Single step skills are skills that should be learned in a single day
    5. All of the above are true
    6. None of the above are true

 

SAMPLE QUESTION 5:

Which of the following are TRUE about fading prompts?

    1. If you teach a child a skill using a prompt, you should always prompt him when you want him to perform that skill
    2. The amount of time you should prompt before fading a prompt is different for each child
    3. After a child gets a skill right a few times in a row, you should try a less intrusive prompt
    4. If a child makes a few mistakes using a less intrusive prompt, you should move back to using the more intrusive prompt
    5. B, C and D only
    6. None of the above

 

SAMPLE QUESTION 6:

You are teaching Ali to eat melon and he is able to hold the fruit and smell it. What would be an appropriate next step to teach and provide reinforcement for?

  1. You don’t need to provide reinforcement for eating.
  2. Provide reinforcement for touching the melon
  3. Provide reinforcement for eating 4 large pieces of melon
  4. Provide reinforcement for touching the melon to his lips briefly

 

Did you know the answers?

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Learn With Us: Meal Skills in Mersin

This morning we had a great Q&A session about teaching meal skills with our teachers and families in our Mersin program. Over the weekend, participants watched the meal skills presentation (the second to last presentation in our Mersin program) on our private YouTube channel. They gathered this morning to ask questions. Here are some of the things they wanted to know:

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Muna, Mother of Haya, age 7: I want to ask a specific question about Haya. During mealtime, she likes to take her iPad and play with it. However, while she is doing this, she eats in the correct way. Is it okay to continue like that?

A Global Voice for Autism Team: I am sure that all of us look at our phone or do something else while we’re eating sometimes. Like you said, if Haya is still eating appropriately, then it’s not something to be too worried about. However, if you do have a situation in which you need her to eat without her iPad, she is likely to find this very difficult if it is part of her routine to have her iPad.

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(Haya, 7 and Reema, 9, join their families for a support group picnic in the park last week)

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Soumia, Primary School Teacher: I heard that children with autism have low appetites. However, the child with autism that I know never stops eating unless we remove the food from him. Can we use imitation skills to teach meal skills. For example, can I hold his hand or have him model how I eat?

A Global Voice for Autism Team: Some children with autism have low appetites, but not all children with autism. It’s also not unusual for children with autism to eat a lot, like the child you know does. Food is naturally enjoyable (reinforcing) for most people, and it can be hard for children with autism to manage their food intake. They may not understand social rules around how much to eat and may not understand the implications of their decisions, such as the need to eat a balanced diet to remain healthy.

If a child is able to understand pictures, you could show him pictures of what he can eat (this could include quantities) and only allow him to eat that amount. You could also build some choice into it so that he can choose some of his food. You could use imitation to teach him to eat slowly, using a spoon or fork if he is eating the food that he has too quickly. When he eats at a slower speed, even if just briefly to start, then you can provide reinforcement.

* * *

Rula, Primary School Teacher: Is there a specific diet for children with autism? Are there certain foods that children with autism should or should not eat?

A Global Voice for Autism Team: Eating healthy foods is always a good idea for any child as it can improve concentration and keep them feeling good. However, there is no specific diet for kids with autism. Like all children, some kids with autism have sensitivities to things like gluten (found in bread and flour) or lactose (found in most dairy products). If you see that a child seems to be sick/uncomfortable after eating certain foods on a regular basis, it’s a good idea to check with a doctor to see if the child might have a sensitivity to those foods. You can also try removing a food from a child’s diet for a period of time (10 days) and see if the child appears to feel better. Then, try adding it back in and see whether the child seems uncomfortable/sick after eating it. You can do this for any child, not just children with autism.

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Do you have questions about feeding and meal skills? Comment on this post with what you want to know!

-Melissa

 

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Strength, Resilience and Dedication Don’t Even Begin to Describe It…

Life is a series of unforeseen circumstances. The families and teachers in our Mersin program could tell you about a war that swept through their country and their lives, causing everything to devolve beyond their wildest dreams. And yet, they found a way to continue their lives, packing up their surviving family members and heading for a new life in a foreign country, doing everything they could so that, at least for a little while, their children could call Turkey “home.” But life is a series of unforeseen circumstances. On the night of July 15th, a coup attempt rocked Turkey at its core, resulting in roundups of military, government personnel and teachers, and ultimately forcing our team to make the heartbreaking decision to evacuate two weeks before the scheduled conclusion of our program.

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(A gathering in the streets of Mersin on the night of the coup)

Nonetheless, our program participants were committed to continuing their learning, and we were committed to continuing to teach them. Our team gathered with all of our Mersin participants over Skype and did what our Mersin team does best…we found a solution.

Now, on Mondays at 11a.m. our parents and teachers log in to a private Youtube channel where they watch recorded versions of the presentations we had planned on giving between the evacuation and August 18th. At 2p.m. Turkey time, they gather with our team, now spread out around the world, via Whatsapp for a live Q&A session about the presentation.

On Wednesdays and Thursdays, our cooperative group leaders show off their leadership skills, gathering their groups at the center where we work for group-led practice sessions. They take turns working with the children in their groups while other group members take videos of their work that they send to our team for feedback and suggestions…We are amazed by their initiative, and when we watch their videos, they are mastering everything! They don’t even need us!

(Teachers Rana S. and Soumia work with Haya on writing and receptive language skills)

These days in their support groups, the families are working on coming up with new activities that they can do together with all of their children. The parent group is creating an encouragement book that they will write in and pass from family to family every week while the siblings are writing a story about their autism sibling superpowers. They have lively Whatsapp discussions based on prompts we send out on Monday evenings. Yesterday’s prompt was: “Where do you find community? Which communities do you belong to? Are they accepting of your child with autism? What do you enjoy about each of these communities? What do you wish was different? All of the mothers listed A Global Voice for Autism as one of their communities!

And if that’s not enough, the families are organizing their own picnics, playdates and social events for the group. They really don’t need us anymore…and for us…that’s our dream come true! 

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(Haya and Reema at the support group-organized picnic)

Hate, violence and fear have all found themselves on the Mersin agenda over the course of this summer, and still, the families and teachers we serve are choosing love, peace and hope every time.

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-Melissa

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Happy Birthday to Somali Community BCBA, Laura!

Today, we are taking a break from our Mersin program coverage because…it’s our Somali Community BCBA Laura’s birthday!

Laura’s passion and commitment to the community she serves is evident in everything she does. She is constantly encouraging the families while challenging them to reach their potential. Thanks to Laura’s dedicated teaching, here are just a few changes our Somali families have seen so far:

-“I learned to ignore his attention seeking behavior and now I have seen those challenging behaviors decrease.”-Mother of Abdi*, age 5

-“I’ve learned to reinforce my child and to be persistent when I am trying to teach him something new.”-Mother of Mohammad*, age 7

-“I used to always carry my child around, but now I’ve learned to put him down and not to let him cling to me. I stopped giving him attention for jumping on the couch and now he doesn’t do it anymore.”-Mother of Ashkir*, age 5

And if that’s not enough evidence of Laura’s impact on the community, try this: She’ll be celebrating her birthday by leading a Jeopardy game for our families tonight.

Have a great day, Laura!

-Melissa