Not goodbye...See you later!

Our last day at SOREM the teachers had a party for us at tea time.  We ate sweets and they presented us with a pouch and book marks the students stitched and painted during vocational training.   They are beautiful and we love them!   We have a dance party (Bhangra, which is Punjabi dancing) and are reminded how this school empowers each and every student.  If only we could post the videos!  We leave here with new friends, new knowledge, and a common interest to commit our time to these special individuals. This is our personal first visit to SOREM, but it will not be our last!

Working the night shift

Most days we hold private consultations in the afternoon/evening for an hour and a half. Parents from around the area (and one from 4 hours away!) come and bring their children for some advice or information.  It’s wonderful to meet with families outside of SOREM who are so interested in learning more about what they can do for their son/daughter. Many of the families are already doing so much for their children—by teaching them at home, taking them to different therapies, or experimenting with different teaching methods. This collaborative approach with parents exemplifies our thoughts and practices on empowering the individuals we work with. More over, each family we work with offers another opportunity for us to engage in our own critical reflection about our work and the best practices for future partnerships. 

Everyday, something new!

 We look forward to working in the classrooms everyday.  When we enter the classroom, the students stand and say “Namaste Ma’am/Sir!”  Some of the students call Jayshree “Didi” (which means older sister).  Some come and shake our hands and it excites us to be with them for the day.  We learn everyday that this work is not about “helping” other people.  This work is selfless, in that it is about building a bond with people—their lives, their kids, their families.  We work together with teachers and students everyday, take ideas from one another, and brainstorm as a team. We see that they accept and love their students, and raise the expectations for them everyday.  We feel the ease of the students at SOREM—it is a place where they are expected to work hard, but are treated with equality and respect.   We also learn that we both struggle with autism/special needs awareness, and think about a place in society for the adults with special needs.  So many commonalities exist among so many cultural differences, and across so many miles. 

Look both ways...

A picnic in the park!

Friday we went to the Park and had a celebratory picnic to celebrate all of the awesome experiences we’ve had together over the past two weeks; it was so much fun! The students were so impressive. To say that crossing the street here in India is a challenge would be a vast understatement – New York City streets have nothing on this place!

Basically, you stand at the side of the street – look right first (because, you know, cars are driving on the opposite side of the road here!)  then look left. If there are no cars, rickshaws, horses, dogs, motorcycles, buses, scooters or bicycles coming at you full force, you make a run for it! Mostly, you hope for the best and so far, it’s worked out just fine. I mention this so that you can easily imagine what I mean when I say that 90 students (children and adults alike) all crossed the street on the way to the Park. One of the older students stepped out into the street and into the role of crossing guard and managed to stop cars, buses, bikes, dogs, scooters, and more so that all of the students and teachers could safely cross the street.

At the park, there was music, games and of course great food. It really was quite impressive to see close to 90 students with varying levels of physical and mental abilities sitting in a big circle all together playing games, singing and dancing together! We played a game similar to duck, duck, goose, ran races with the teachers and just had an amazingly fun time and delicious food. Until now our days have been filled with work, work and more work – it was nice to play!

Speaking of playing, everyone’s been asking what we do in our free time around here. Mostly, when we hear that question – we just laugh. We’ve literally been working 6 days/ week in SOREM and spending all of our free time preparing for the next day’s activities and 6-hour weekend workshops. We’ve been busy, but as savvy travelers have managed to learn our way around a bit and find some time to play. A favorite hangout has been the coffeeshops walking distance from the center where we all take turns using the one available outlet and the one computer that works with the wireless internet card. We’ve also managed to find a few good places for some after work relaxation and of course we’re all enjoying bargaining with the local street merchants for some beautiful handmade gifts for friends and family back home. We’re so thankful for Jayshree’s ever-growing Hindi vocabulary.  

We’re also so incredibly thankful to all of you who have made our visit here possible and the wonderful staff and families of SOREM who have made it an absolute pleasure to visit India once again! 

Connections

After reviewing printed versions of slides of previous workshops held at SOREM and comparing the information presented to the knowledge level of the staff with whom we were interacting, we decided to take a very practical approach to the workshop, heavy on examples.

The survey results are in and we’re excited to report that everyone loved it! One of the main concerns for people that we were able to address is the concern that we all have when presented with a formidable challenge: where do I even start? Behavior modification can be a challenging task that tests every fiber of your being. Modifying your own behavior is difficult enough, modifying someone else’s--obviously a much larger task. In order to help people learn where to start we broke everything down.  We presented examples in video, in situ, through case studies. Topics were checked for understanding before moving on and then reviewed again in a different way with a new case study, a new example, etc.

This visit to Chandigarh marks our third this year; this workshop was our first. Having attended and conducted workshops in the past, we knew that we needed to prime the teachers to help us present the material in order to get everyone on board for what can be a  very challenging task of behavior modification; this past week was spent doing just that. In daily three hour in-classroom training sessions and 1.5 hour teacher education workshops, we’ve been able to present and review a tremendous amount of skills for the teachers’ toolboxes!

The Saturday workshop was an amazing success and the workshops have been as well. That being said – we know the proof is in the pudding and to us the ‘pudding’ is the follow-up and data. As a professional organization devoted to this work full-time, we’re fortunate to have the resources to stay in touch with our colleagues here in India and be able to answer any questions as they arise during our weekly meetings. Things change fast when teaching students and in order to stay a step or two ahead of the student, you must be able to change quickly as well.

We’re very curious about how International work happened without the internet, or even phones-- we couldn’t do this work without Skype! We had a trial Skype call to make sure that everyone is able to sign on and talk without difficulty. Casey was on the call from the U.S.!  This was immediately following our call with our colleague in Kenya. That call included Casey in San Diego, Molly in  India and Pooja in Kenya – connecting across three continents and three different time zones was an incredible experience! 

Incredible India...

When you arrive in India, there’s propaganda everywhere, partially as a result of the Commonwealth games and partially on account of the amazing amount of nationalism here. You see it everywhere: “Incredible India” and India is Incredible! From the food to the clothes to the people to the sites, everything about it is incredible, in so many ways, as you’ve already read in our earlier post.

However, to call the facilities and teachers at SOREM incredible seems to be an understatement – they are truly exceptional. When I was here last January, I was so impressed with everything, and this time SOREM seems to have outdone themselves once again. The Honorary Secretary (and Founder) Ms.Promila Chandra Mohan has been able to start to focus her energies on some of the educational services offered. For the past two years, she’s been extremely busy with creating a state of the art center and building up both the recreation and vocational training services offered. It’s great timing for our partnership to be gaining so much momentum! Additionally, it’s exciting to see our presence here taking hold as the country is starting to focus on learners with autism. It’s exciting to think about where this center and the country will be in five years when it comes to providing services for children with autism. We’re honored to be a part of such a huge movement.

SOREM serves over 50 individuals with varying degrees of physical and mental challenges. Recently, they’ve increased their enrollment of students with autism. Two of the classrooms contain only students with autism, and many of the other classrooms have students with autism as well. We’ll be working to train all of the teachers in evidence-based teaching methodologies. Additionally, we’re providing private consultations to families with children with autism and holding Saturday workshops to provide training to the general population.

Last Saturday was our first workshop and it went amazingly well! Brad and Jayshree worked really hard to examine the notes from workshops that had been conducted previously here at SOREM as well as build a workshop that specifically fit the teacher’s needs. The success of the workshop was measured by the level of interaction and insightful comments and suggestions! We’ll be writing a full post about the workshop tomorrow evening, once we’ve compiled the surveys and can let you know the results. Crackers exploding in the night sky and loud music being piped in…another night in India!

We're in INDIA!

After hours of travel, the team finally meets up! Brad and Molly left from L.A. and flew into Delhi, and took a bus to Chandigarh to meet up with Jayshree, who came in from Ahmedabad where her family lives. After only one day of rest (that was filled with the requisite tourist visit to the local market), we headed to SOREM for the first day of observation and collaboration. The school is gorgeous with large pictures of the students covering the hallway, multiple classrooms including speech, PT, and vocational activities, a garden, a dance studio, a playground, and large basketball court. The staff are unequivocally gracious, and welcomed us into their classrooms to meet their students, young to old, who all greeted us by saying "Namaste!" We met with the Honorary Secretary and founder, Ms. Promila Chandra Mohan, to discuss details about our 3 week stay. Most of the day was spent observing the teachers and students in the classroom, and making plans. Leaving SOREM after the first day, we are all equally excited for the work we are doing here.

The food is amazing, the shopping (and bargaining) quite an experience. Jayshree speaks Gujarati (where her family is from), and has been helping the crew get around via Rickshaw with her limited Hindi. Also, we can't forget to mention our honorary team member and in-country ambassador Avikal Malik who has been a considerate and invaluable friend to the project.

.....Back at the guest house, the crackers are so loud we can barely hear each other. Apparently it's festival season--starting with Diwali in early November and moving into weddings back to back through January. The music is ongoing with singing into loudspeakers (of course). It's a party out there!  In go the ear plugs.......have to get up early for a full day of work tomorrow!

Autism Society of West Africa!

We've been hard at work over the past few months, working on building West Africa's first ever regional autism conference. This conference will serve as the catalyst for the creation of the Autism Society of West Africa. Delegates from Nigeria, Senegal, Ghana, and Benin are all planning to attend. We're looking forward to an amazing conference and would love to see you there! Details will be posted on our website in the next few weeks, so stay tuned!

In the meantime - save the dates!

April 8-11, 2010 in Accra Ghana!

Hope to see you there...

Pictures Autism Awareness Month events in Ghana...

Artwork, done on Thursday's at AACT, being sold at the parents meeting



Concert in Osu by Joyful Way Incorporated




AACT field trip to the Legon Botanical Gardens



Thank you Milo for your sponsorship!



Auntie Serwah up at the podem during the seminar at the British Council



Excited caregivers during our community awareness walk



The awareness walk, escorted by the local police




This picture speaks for itself!



Dear readers,

April was sure busy, wow! It is amazing to think of all the events that were organized, the people who connected and the awareness that was inspired by the 2010 Autism Awareness Month in Ghana. Starting from the huge benefit concert at the National Conference Center, to the community walk and field trip, to the radio shows and press conference, all in all... it was a success.

My personal favorite was the field trip to the Legon Botanical Gardens with all of the students and caregivers. Metro Mass Transit very kindly gave AACT a bus at a discounted price for the day and so we all could ride together. The bus ride to the gardens was filled with singing, dancing, and drumming (This seems to be a theme here in Ghana. No matter what you are doing, there will always be drumming and dancing. Amazing!). Once there, we played all morning on the playground, drank cups of cold Milo thanks to a donation from Nestle, ate mounds of Jolof rice thanks to a parent donation, took a walk around the lake and then had another bus ride filled with singing. Needless to say, everyone was exhausted at the end of the day.

The second best event of this past month, I think, was the last event: the parents' meeting. Upon arrival, I was skeptical about the turn out. But as the time passed about 10 parents showed up, a few caregivers and then the administration from both AACT and Awaawaa2. The agenda for the meeting was to recap all of the Awareness events, thank those involved, and discuss the future of the students who are now starting to out grow the center. Unbelievably, a parent of one of the older boys arrived to the meeting prepared to start a parents organization. This organization will be responsible for creating an assisted living & vocational training center for young adults with autism. This one parent facilitated the meeting, took down names of dedicated parents, and even planned the date and time for the next meeting! Motivation and initiation, its about time. As Auntie Serwah herself even said, “A new facility for the older children should have been done yesterday.”



As the month of April comes to an end, sadly so does my time here in Ghana. In three weeks, I will be returning to the US. Its hard to believe. This will not be the end of my work with the Global Autism Project though, I am excited to say that I will be co-hosting the Paddle for Autism Awareness this summer with Molly! What a better way to recap my work here than to talk about it cities all over the USA.

I am thankful to have been a part of Autism Awareness Month in Ghana this year and hope that it was just as successful in all other parts of the world. Only 11 more months until Autism Awareness Month 2011... lets start planning to make it even more powerful! Together we can make a difference.

Casey

HAPPY AUTISM AWARENESS MONTH!

Dear Readers,

As some of you may know, April 2nd was World Autism Awareness Day! Hundreds of countries around the world held events on Friday and will continue to throughout the month to raise public awareness about autism.

The events in Ghana started a couple weeks ago with an awareness campaign at the Accra Mall. For three days, AACT administrative staff along with the members of the Chosen Vessel Choir were going to promote a benefit concert being held the following Sunday. Unfortunately, after the first day they were told to leave. I guess the marketing team at the mall had a particular sensitivity to singing.

On Sunday, March 28th, the Chosen Vessels Choir made of all University of Ghana students, put on a spectacular benefit concert. It was held at the International Convention Center and lasted 6 hours!! Performances ranged from skits, solos, preaching, singing, dancing, lots of clapping and a video documentary about AACT. In the end, there were over 1,000 in attendance, each paying 7 cedis for a ticket. After expenses are paid to the performers and staff, it has been said that AACT will receive the rest of the proceeds. Either way, it certainly raised awareness on a huge scale!!



Last week, Auntie Serwah and Nana Akua (Founder and Director of Awaawaa2 - pediatric speech therapy services), were interviewed on various radio stations. On Tuesday morning, when they were on Joy FM, we turned the radio on through the stereo speakers at AACT so everyone could all listen! I suggested that next year we should get a truck with megaphones and drive around town amplifying such radio programs so the entire community is able to hear it. Hey, everyone else in Ghana is doing it.



At the end of the week, I had a meeting with Salma the director of the West African Consultant Network. This is an company that has offered to partnership in the organization of a fundraiser scheduled for the 22nd of April. Essentially it would be a networking event for their staff and clients, while also raising funds for a local cause. I have attended an event like this in the past and it was quite successful. Hopefully we have the same results.









As far as caregiver trainings go... on Friday March 19th I did a training focusing on Howard Gardiner's Multiple Intelligences. To teach this I started with a game that was actually inspired by my mother(thanks mom!). The idea behind the game is memory retention. The caregivers first numbered their papers 1 - 30. For the first ten: they had to listen to 10 words and then write down as many of the words as they could remember. For the second ten: I wrote 10 words down on paper, they were allowed to look at the word for 20 seconds, then once the paper was covered, they were to write down as many as they could remember. Finally for the third ten: I unveiled a tray of 10 items, they were allowed to look and touch the items for 20 seconds, then once the items were covered, they were to write down as many as they could remember. The idea behind this game was to show them that some people work better with auditory memory while others excelled in visual or tactile memory. Obviously all relating back to the different approaches to lesson planning and teaching students with autism. Similar to past weeks, we also played a few team building games such as the human knot.




Overall, I felt like the training was successful. The caregivers seemed engaged. They asked questions, took notes, and requesting for more. All in all, I felt pretty good about it until, a certain administrative staff asked "Why are you even doing these trainings? You know that the caregivers just nod their heads but really do not understand you." Well... I had a hard time with this comment. It wasn't until last night that I found a quote that descibes how I felt about the situation:

"I do not want my house to be walled in on all sides and my windows to be stuffed. I want the cultures of all lands to be blown about my house as freely as possible. But I refuse to be blown off my feet by any of them."
-Mahatma Gandhi


In honor of children with autism around the world and as a member of the Global Autism Project, I will always try my hardest to provide sustainable education to communities affected by autism worldwide. In life there will always be mountains temporarily blocking your path. But this doesn't mean that the other side doesn't exist. Together we can help to change the lives of children with autism. Only together can we get over this mountains, supporting each others positive efforts.




Thank you for reading!
Sincerely,
Casey

After a few weeks of attempting to conduct caregiver trainings, finally I was granted the time. As I have mentioned before, lecture style trainings have not been the most successful so the teaching style had to be adapted. First, we set up “class” outside. This not only created more physical space, it also was much cooler temperature wise and tended to decrease the probability of people falling asleep (yes, this is a valid concern, no matter how entertaining your presentation). Secondly, I have started each training with a 5 minute Brian Gym. Brain Gym is a technique that I learned through Multikids, the other school that I am working at here. It involves deep breathing and body moment (similar to yoga) to get the brain awake and stimulated.

The beginning week I asked, “What is behavior?” To be able to teach or model good behavior, it only make sense to first know what exactly this means. Thanks to the STAR Autism Program, we identified the ABCs of Behavior: the antecedent, the behavior, and the consequence. Then brainstormed examples of this three part series in our daily lives. While discussing, I wrote key points on a white board. Due to the outcomes of past trainings, I felt it was best if I let the caregivers take the initiative to copy down what was being discussed if the desire was there. I, by no means, will force an education on anyone. Although will also be the first to say that with education comes empowerment. Without my prompting, 4 out of the 12 caregivers present came prepared with notebooks and pencils. It was a step in the right direction.

The following weeks we have focused on positive behavior reinforcement, the idea of extinction, and Discrete Trial Training. As some of you know, these are not new concepts at AACT. The caregivers have been taught these ideas over and over again, with little degree of change. Partially due to cultural differences, but also coming back to the teacher. I feel that I have a bit of an advantage conducting trainings at AACT now versus back in July '09. I have spent many months working along side the caregivers and helping with the students. Compared to someone coming in new to Ghana and new to AACT, I have somewhat of a greater understanding of this environment as well as knowing the caregivers on a much more personal level. Therefore, I rely heavily on their participation in these trainings. I pose questions to them, let them role play, and together we brainstorm ideas of how to make concepts, such as positive behavior reinforcement, a regular routine at AACT. Conducted in this way, I feel and hope the information being given is more sustainable.

On top of Brain Gym and the more educational based lessons, I have started to introduce team building games. Stemming off of charades, we have done other activities that involved non-verbal communication, trust, memory and cooperative skills. It is amazing to see people who generally do not show very much emotion and many times are quite “relaxed” by Friday, becoming active, lively, and full of character. Creating an environment that is enjoyable makes learning more conducive. So last Friday we were told that the caregivers must clean the center instead of receiving training and literally one caregiver said to me, “I am disappointed. This is the only place where I can receive an education and today they have taken it away from me,” I was crushed. Yet it also meant that the trainings were having a positive impact.

World Autism Awareness Month events are also coming along well. This week AACT will start its awareness campaign at the Accra Mall. Other events have been added, such as a craft fair on April 10th. This idea came about from an artist that has been recently volunteering on Thursdays. This man not only donates his time to teaching the children once a week, he has also donated many of his beautiful pieces of art for the center to sell.

On a separate note, there was a wonderful thunderstorm last night. So for the first day in months, we did not see the sunshine. It was a nice change from sweating.

Sincerely,
Casey

(My apologies for the lack of pictures in this entry, I promise more next time.)

Wow, is it really the 1st of March? For how slow some things tend to be here in Ghana, my time always goes so quickly!

Friday, the 6 of February was supposed to be the first day of caregiver training at AACT. Even after communicating via email with both Auntie Serwah and Auntie Baaba throughout the week about the training details, there was still a conflict. Upon arrival to AACT, I learned that Auntie Serwah had actually planned to throw herself a belated birthday party. This included music, food and drinks for the entire school day. While it was fun and a kind gesture, it did not create the most effective environment for teaching. Due to this circumstance, the training was rescheduled for the following weeks.

I left AACT that day feeling frustrasted. Frustrated at the lack of communication between administration and volunteers, as well as the lack of attention being given to the students. It was then that it hit me. So many volunteers have come through AACT to do caregivers trainings. So many volunteers have addressed these issues in lecture style classes. Although all of them have some level of positive outcome, the real net gain is small. How do we change this?! It is clear from the long range effect, or lack there of, that these type of teaching may not be the best way to reach everyone. Therefore we, the teachers, must change our teaching style in order to accommodate our “students.”

Instead of a lecture that following Friday we played charades. For anyone who is not familiar, this is a game where you have to act out a specific event, character, or action without using any spoken language. Then your team mates have to guess what you are trying to convey. Not knowing how this was going to turn out, I made about 20 different cards, divided the teams and crossed my fingers. After the first few warm-ups, the caregivers were into it! Not only were they cheering for their teams, they were actually acting with expression.



Once the game was over. The question was posed: “What was the purpose of playing?” Silence. So adapting my question, I asked them to how it felt when their respective teams were unable to guess what the actor was trying to portray. “It was frustrating,” “it was annoying,” “it made them mad not being able to verbally communicate a message.” Exactly.


The majority of the students at AACT have not developed verbal communication skills, nor have they learned any other form of effective communication. It is my hope that the caregivers now have a better understanding of how these children feel everyday of their lives. If nothing else though, the game has now been carried out to an unexpected level. Since that Friday, one specific caregiver has taken it upon himself to set up the game every week. After our lessons, he has run a charades game. Last week he even brought prizes for both the team who won and the team who lost!

Besides charades, there are a few new items to report. First of all, I want to say how proud I am of the caregivers and Auntie Baaba for initiating the use of PECS during their lunch time. Right before the holiday break Auntie Baaba made some pictures of pure water bags, spoons and forks. At first, I was unsure about how effective it was going to be just due to the inconsistency of their use. Although, to my amazement, the caregivers have gotten quite good with this system and the children have really responded. The majority of students will now request these items either verbally or with the pictures! Its a great step towards teaching communication that now needs to be expanded.


Auntie Baaba and Auntie Serwah also decided to change around the classrooms. Where the older students were is now where the primary class is and visa versa. This makes so much difference. It is much less distracting for the young ones and also gives them more space, with direct access to the bathrooms and kitchen.


Planning for Autism Awareness Month is also progressing! The following are the tentative dates and events planned as of last Friday, February 26th with Auntie Baaba and Auntie Serwah:

17th – 19th March - Autism Awareness Table at Accra Mall with Joyful Way Inc.

20th March - Mandatory AACT Parent's Meeting

28th March - Autism Awareness Concert at the National Theater Hosted by Joyful Way Inc.

1st April - Press Conference

2nd April- World Autism Awareness Day

9th April - AACT Community Awareness Walk

17th April - Informational Seminar at British Council

22nd April - Benefit Concert in Osu

24th April - All Parents of Children with Autism Meeting at Multikids

Its going to be a wild month of events!

As always, thank you for reading.
Casey