In-Home Services!

Today began with a trip to a different part of Nairobi for Kaizora's first in-home session ever!!!  Addressing this need has been a challenge in the past, as staffing and transportation have not made this possible.  However, it is clear that there are more and more families asking for such services, so this is a gap Kaizora would love to fill.  This particular case is a 4 year old kiddo from the Phillipines who just moved here with his family.  Given his location relative to Kaizora, the family was unable to come daily, despite their desire for him to receive daily ABA.  As a sort of pilot opportunity, Kaizora has agreed to provide in-home services 2x/week.

When taking into account the advantages, this could be a good opportunity for generalization of skills taught in the center, an opportunity to include self-help and toilet training programs, and provide the father, who cares for the boy at home during the day, with some modeling and coaching, as this is an area he felt as if he wasn't as skilled in.  This session consisted primarily of observing him in the home, getting a feel for his routine, and getting him comfortable with trainers being in his environment.  Things went really well, and what is clear is that the boy seems eager to learn, and the father is very receptive to feedback.  I became inspired that things could work well when the boy grabbed his father's hand and led him into the kitchen towards the fridge, we prompted the father to ask the boy to say "open please", which he did, and when the father did so, the boy grabbed a bottle of coke and handed it to his father.  The father said "no coke" and closed the door.  The boy instantly tantrummed, throwing himself on the floor screaming and crying.  The father tried to redirect the behavior by looking at the boy and saying "it's ok, come on, let's leave, it's ok, it's ok, it's ok".  I asked the father "what would happen if he just walked out of the kitchen?", and the father said he had never tried it before.  I said "let's try and see?".  He walked out of the kitchen, and approximately 1 minute later the boy came out of the kitchen, plopped on the floor, looked around, walked to a roll of paper towels, ripped one off, wiped his own tears, threw the paper towel in the trash, and climbed on the chair and got his cup of water and had a few sips.  We of course gave the father lots of praise and he seemed content.  The father is apprehensive about his English skills, especially given we have talked to the family about only using one language to facilitate language acquisition.  Nonetheless, the father seemed content with the day's session, and after leaving the team from Kaizora was thrilled about the prospects of subsequent sessions.

Upon returning to Kaizora, we met with a family from Zimbabwe who has a 6 year old son with Cerebral Palsy with severe physical limitations on the left side of his body.  His leg has virtually no muscle structure, and his mother is taking him to South Africa in a month to receive a botox injection in his leg.  There was a lot of clinical problem solving around how to increase functioning on the left side of his body, including me contacting a Doctorate-level Physical Therapist in the United States with extensive background in working with children.  She offered many helpful suggestions based on the most current research in Physical Therapy with regard to complete vs. incomplete hemiplegia, motor planning abilities and spastic vs. flaccid CP.  She informed us of a growing body of evidence in support of "constraint-induced therapy", which basically entails putting the unaffected side of the body into a position to essentially make it non-functional, and incorporating fun activities into tasks such as pulling a rope, pouring water back and forth between cups, riding a bike with straps to keep his foot on the pedal, stacking blocks and pushing magnets all over a wall.  Hopefully as the kiddo is able to make more use out of the left side of his body, he will be able to participate in more activities with his peers, and subsequently gain more self confidence.  A program will be put in place incorporating ABA tasks and programs and prompting more use out of the left side of his body.  Ultimately, of course, the parents would like to see him go to a mainstream school with the rest of his peers, while still being able to receive the most out of his schooling environment.  We also agreed to meet with the school teachers and his aya (aide) in order to replicate tasks like those at school in the center so the goal can continue to be mainstream placement.  We were able to run many sessions with this kiddo later as a team, and what was also evident is the desire for him to compensate the best he can given restrictions on his left side.  We ran Precision Teaching sessions, and prompted lots of motor imitation in the context of his preferred activities, such as peek-a-boo, high fives, raising arms above the head and cheering and manipulating objects with his hands.  His left side upper body is much more functional than his left leg, and his mother indicated that when he had botox previously on his leg, his stance and walk was much better.  The team is excited to see how this round of botox affects his muscles in his legs.

Overall the day was very good, and there was lots of opportunities for in situ clinical problem solving and development.  We had the chance to record some sessions so we can review later and provide feedback later and review with Molly back in New York on Skype.  Pooja was hard at work trying to ascertain a large selection of reinforcers for the kiddos, and pairing these reinforcers with pictures she made on cards so they can have some meaning as we implement "First, Then" boards.  Way to go team!!
- Emily

Expanding Services

Today I met with a family from Somalia who came to seek my advice on how to support their 4 year old son in school.  The principal of the school feels that the child has "borderline autism" and the school may not be able to provide the support the boy needs.  After probing quite a bit and getting some background information, it sounds like there are many variables that could account for some of his delays academically and with his speech.  They said they had him screened for autism almost a year ago, and no diagnosis was given.  The principal would like to see the family get a second opinion, and I advised the family that it couldn't hurt to either rule it out or rule it in, for their own knowledge, but they should be very careful with how they disseminate that information, as it could cause him to be viewed and judged based on his label, not on his skill repertoire and abilities: it should not matter whether he has autism, what matters is how he is functioning relative to his peers, and his success in the classroom.  They asked what they could do in the meantime, and I suggested they have consistent contact with the school teacher, and the principal so she does not feel as if she is being left out, and target areas as needed and proactively as possible.  The break time between terms would be an ideal time to help him in areas he may be lacking.
What was positive was that the family was not plagued and concerned with the possibility of being diagnosed with autism, but instead want to use this knowledge to provide support where it is needed.  This meeting sparked an already determined interest in understanding diagnostic criteria, and how this information is then used to guide families towards resources they may need.  Perhaps if there is more awareness surrounding appropriate and accurate diagnosis while taking into account cultural differences and practices, maladaptive behaviors and developmental milestones can be targeted earlier, increasing likelihood for success throughout life.  Pooja and I also had the chance to take a closer look at specific clinical practices for specific clients, specifically shaping skill acquisition for a child with cerebral palsy.
We developed "First, Then" visual aides, and worked with staff on how to make access to powerful reinforcers contingent on appropriate responses.  Upon speaking in depth with the trainers at Kaizora, a targeted clinical training need during this trip will be the principles of reinforcement, planned ignoring and extinction.  Subsequent to this, in an effort to provide staff with more tools in order to make data based decisions, further training will be done in how to conduct preference and reinforcer assessments, and how to use this data to support skill acquisition.
This has further implications to create for Global Autism Project a structural training module and protocol for use at each site, based on the BACB's BCBA task list as well as personalized systems of instruction and inter rater reliability.  Another area of need appears to be logistics in terms of being able to provide services to everyone who needs them in all areas of Nairobi.  There are many families that have come for assistance, however logistics in terms of distance, transportation, etc, prevent them from being able to receive services consistently.

- Emily

Everyone's Learning!

Today has been a great day. We're all working together really well, the atmosphere is charged with positive energy and everyone is learning :)
Emily had a great consultation with a family this morning and gave plenty of great advice as always. I started sessions with a 4 year old boy today. We came up with ideas on what to run trials for and I feel quite confident with him. We're putting a first-then chart for some of the children and I'm quite excited to see how that goes. I think it'll definitely iron out some behaviours with harry.
I then had another consultation, which brought into limelight one of the main obstacles for parents getting therapy at kaizora... Transportation and traffic logistics. So many parents can't bring their children from across town for a couple of hours of ABA therapy and take them back. I hope that kaizora can one day provide full-day services and transportation as well. There are many we still have to reach out to.
After sessions, Emily worked on the workshop and we did some brainstorming together... And I went on to make some materials for the children.
I really enjoy working with Emily... We seem to be in tune when talking to parents or brainstorming about ideas... I really appreciate all she is has come to offer to us and am eager to soak it all up!!!
Tomorrow we're going to start our first ever home-based therapy and I'm looking forward to this new chapter for Kaizora.
:)

Pooja

A Day of Clinical Developments

Today I had the opportunity to get into some sessions and observe fluency based precision teaching as well as some discrete trial training. It's so amazing to see the skype training we have been doing for the previous month prior to coming being put into action-- I never thought I'd see the day when I would be seeing therapists in Kenya taking data on standard celeration charts!! I also was able to see a client doing vocal imitation sessions with the use of a vocal stimulation machine, a piece of equipment I have never come across in the United States. Apparently the client's grandmother suffered a stroke which impacted her speech, and when she began seeing a Physiotherapist (Kenyan lingo for Physical Therapist), she began using the machine. When use of the machine resulted in rehabilitation of her speech, the client's mother wished for her son to use the same machine. Since using the machine, Pooja and the parent report increases in vocal production and sounds, however variables have not been systematically manipulated to determine which intervention, or combination thereof, account for the increase in speech. I suggested perhaps we do an experimental analysis of behavior and embark on an alternating treatments research design and a component analysis in order to determine which variable(s) are responsible for the increase in speech. Given the machine is more of a speech language/physical therapy intervention, it would be interesting to see if data would justify continued "rent" payment for use of the machine. Moreover, the mother has been very pleased with results as of late and attributes them in part to use of the machine, so it would be poor practice at this time to simply stop using the machine if data may indicate it has been helpful.  Nevermind that the Global Autism Project never seeks to enter into a partnership and come into a country and immediately disrupt what the culture has viewed as successful if there is no data to substantiate our decisions. I'm excited to see what data will tell us!!


We also had the opportunity to meet with the mother of a 12 year old girl, and her "aya" (Swahili word for maid) to discuss targets for program development and skill acquisition. She is not in school, and has not been in school for sometime. The education system in Kenya does not seem to strictly oversee and mandate children being in school, which from what I've observed, and based on interviews with multiple families, teachers and professionals, this may not necessarily be all bad for special needs children if they are not getting the support they need by teachers who have an understanding and skillset fundamental to growth and progression. (This also happens to be a possible exciting venture for me in the future and on subsequent trips: a comparative analysis of how education and special education in Kenya compares to IDEA in the United States)  Her mother pulled her out of school due to lack of progression, and has increased her sessions at Kaizora with Pooja, since that is where she has seen the most growth and development.  I suggested perhaps we target some functional life skills training, such as cooking, cleaning, shopping, money management, etc.  The mother was thrilled, and would like to see her daughter develop some skills in these areas, especially since her aya can oversee many of these tasks.


I will be training Pooja and the Kaizora staff how to implement the Functional Independent Skills Assessment and work with Pooja to design programs to target areas of need based on lifestyle, traditions, and ways of life for her family and the culture of Kenyan people.  This is a task I am REALLY excited about, given that results may be seen not just in academic domains, but in self help and activities of daily living as well.  By continuously gauging and assessing not only progress based on follow-up assessments, but on parent satisfaction at home, we can ensure we are targeting skills that are proving to be most useful and beneficial.  So many exciting clinical developments today!!!


- Emily

Making Progress!

Another day started bright and early!

Today we have been at the centre for the whole day and managed brainstorming about the children and their programs and the direction we’d like to see things going which has been amazing. Emily has brought up some amazing points and provided lots of guidance on what direction we can take things next.

We met with Mary’s mum today who was has always been incredibly pleased with everything Melissa has accomplished to date that she never expected her to… but now even more thrilled knowing that there’s still so much more to come. In fact she was saying that she’d love to be a candidate for any research and participate in any possible way!

We also went through Max’s programs in detail, who is a fairly new student and broke down each program and the procedure we’re going to teach every single thing in. We did all this with Molly, Emily and myself over skype. It’s been really amazing as well how the 3 of us are talking even twice a day over skype and keeping updated on everything.

It’s been a really exciting day and I’m feeling more and more confident with everything we’re running here as the days are going by, and we’re only on day 3 so far yayyyy!! 

- Pooja

Day 2!

Today was a very humbling day, as I had the opportunity to see two very different special needs schools serving very different populations and demographics.  The first very small school was located in one of the lowest socioeconomic areas of Nairobi, where many students had physical and mental disabilities that were the result of malaria, HIV/AIDS, cholera and malnutrition.  School fees equate to US$2/month, and children are provided with environmental arrangements based on principles of behavioral prompting and cueing, occupational therapy, physical therapy, speech therapy, medical assistance including HIV testing and proper nutrition.  Upon speaking with one of the teachers at great length about service delivery and needs, she indicated that one of the biggest barriers was overall awareness of disabilities, and alleviating the stigma associated with having a child with a disability.  Slowly as awareness increases, more mothers are coming out of the woodwork to seek assistance with their children.  This has implications for targeting awareness across the country in general in order to encourage those that having a child with a disability is a reality that cannot be avoided or always hidden, but there are ways to support families and creating measurable, observable behavioral change to increase overall functioning in everyday life.  On the other side of the spectrum, we visited a mainstream Pre-K and K school where school fees were approximately US$1000/4 months.  In this case, awareness of disabilities were more openly embraced and provided for accordingly.  Parents were able to see successes overtime with their special needs children, and were satisfied with results.  Collaboration with Kaizora Center also facilitated consistent skill acquisition both at school and at home, resulting in parents acknowledging the extra behavioral support needed at times.  Both parents and school staff were able to attest to the gains children had made when combining school-based learning with ABA therapy provided at Kaizora Center.  At the end of the day, after familiarizing myself with two different settings serving children in Nairobi, what seems clear is that when awareness of special needs children is embraced by families and care providers, appropriate interventions and assistance is sought.  And when those reach out for assistance, and are provided with ABA therapy and methodologies spanning a variety of contexts, families are extremely satisfied with overall independent levels of functioning both at home and at school, as well as functioning amongst the dynamics of the family unit.  This in and of itself may indicate that demonstrating measurable, behavioral change may increase the likelihood that services can be provided to more individuals in more places.  This seems like an ideal starting point and initiative for Global Autism Project and Kaizora Center.    

- Emily

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! 

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

Its been two weeks back in Ghana and things have picked up right where they left off. Before leaving from the U.S. I had the pleasure of meeting with Prof. Joel Arick, the author of STAR and FACTER autism therapy programs. After explaining my background and role in Ghana, he very kindly agreed to donate some items to the schools here. To my utter amazement, he was able to acquire the entire first and second levels of STAR, and the FACTER program with 3 training DVDs. I was blown away by his kindness as well as endlessly thankful towards STAR Autism Support for their generous donation.

As mentioned in the previous entry, my time here will now be shared. During the week, I will be doing speech therapy at Coledic (soon to be Multikids) as well as helping with the development of a program called Towards Independence. This is an hour long class everyday geared toward teenagers with autism who are in need of enhancing their life skills. So far we have done lessons on dish washing, going to restaurants, talking on the phone, times of day and telling the time, useful measurements, watering the garden, ect. No only are we teaching the students, it also gives me a chance to teach some of the other teachers here about lesson planning and essential adaptations and/or additions for students with autism in regards to curriculum. This increases the program's sustainability.

Using the STAR program guidelines and training DVDs, I'll be doing staff trainings at AACT every Friday. The first training, next Friday, will be focusing on positive behavior reinforcements, something that I feel particularly passionate about.

On top of all of this, International Autism Awareness Day, the 2nd of April, is only about 9 weeks away!!! This may sound like a long time to start preparing although not to Ghana. Over the next 2 months, I plan to really focus a lot of my spare time (haha) on networking and planning for events.

As for my re-entry back into Ghana... well according to most, I have lost all my tan and apparently ate too many Christmas cookies. Ah, it's nice to be back.

Many thanks for reading.
Casey

P.S. Good luck to the Ghanaian national soccer(football) team as they face Egypt in the African Cup of Nations Tournament finals this Sunday.

A New Year in Ghana

Dear Readers,

I first must apologize for the lapse of time since last writing. I hope the holiday season has brought you and your loved ones an abundance of health and happiness. Since the last update, there have been changes to my role as country director for the Global Autism Project as well as many new developments at AACT.

Back in October and November, AACT had an incredible influx of new volunteers. From US study abroad students to Ghanaian community members, the center was consistently flooded with bodies. For the most part, the increased ratio of caregivers to students was beneficial, especially when focusing on the outcome of new program developments. The most influential volunteer-initiated growth was the introduction of an adapted physical education program. This not only proved to be an essential break and energy release for the students, it also gave the caregivers a chance to teach in a more alternative environment.



My personal favorite addition is swimming Friday's. After a large clean-out session of the center, we found many usefully toys and resources, one of them being an unused, blowup pool. Unfortunately though, due to the size of the pool, only the younger two classes are able to safely use it. Just as every student learns differently, not every teacher is able to thrive in the same environment. Through these added programs, we found newly excelling students and caregivers.

Throughout this fall, AACT continued the ongoing process of fund raising and increasing public awareness. Auntie Serwah and I presented to the 120 member University of Ghana choral group about autism and AACT which lead to them choosing he center as their focus for an annual fundraiser. We set up booths at two different bazaars, one more monetarily successful than the other.

As a representative for AACT, I was also given the opportunity to attend the National Inclusion Forum. This conference brought together teachers, parents, doctors, government officials, and any other professional working in the field of special education. The idea was to learn about current policies and adapt them to accommodate all people with any disability, including learning disabilities. This forum was a first of it's kind and needs to happen more frequently in order to provide these children with the education they deserve.



So what does 2010 look like for the Global Autism Project in Ghana? For the next few months, one of our main focuses will be helping to organize events for April, International Autism Awareness Month. Using previously established connections in conjunction with a newly formed parent support group, increased program development, and heightened volunteer communication we will strive to put autism in Ghana on an international radar.



Over the past 6 months, I have worked hard to really highlight the positive growth within AACT. However, this does not always come easy. Just like anything else in this world, not all of our plans or proposed programs work perfectly. In fact sometimes what works in one environment, will not work at all in another. I have learned a great deal about flexibility, not only within my own expectations but also accepting criticisms of programs, trainings, and the lack of follow-through.

On a more personal level, I was asked to become a part of Ghana's first "all-inclusive" school, COLEDIC [The Communication Learning Difficulties & Counseling Center], as a part time Speech Therapist and Autism Specialist. My presence at this school has allowed me to help AACT increase their involvement with a population of special education advocates in the local community. Originally, my position as the country director of the Global Autism Project in Ghana was going to end in the beginning of December. This has since changed. Thanks to agreements between COLEDIC and GAP, I have been asked to return in mid-January and continue in the effort to help the development of resources available to people with autism in Ghana.



Thank you to everyone who has been reading our blog over the past months and hope you will continue to follow throughout 2010!

Sincerely,
Casey

Greetings!

It’s hard to believe it has already been 5 weeks in Ghana. Despite feeling more accustom to the routine, every day presents new challenges and unexpected obstacles (such as shoes breaking in mid step and unannounced bus route changes). On the other hand, I also am constantly blown away by Ghanaian generosity and the beauty of this country.

This past Wednesday, I had the privilege of finally meeting Auntie Serwah, the founder and director of AACT. She had left for the US right before our service trip, to accept the Heartspring Award. This is an award that recognizes innovation and creativity in special education worldwide. There are only ten recipients of this award every year. From what I have seen and heard, she deserves it. Congratulations Auntie Serwah and Akwaaba (welcome – back)! For more information about the Heartspring Award check out http://www.heartspring.org/award/.

I really focused this week on modeling positive reinforcement. Not just here in Ghana, but around the world we tend to focus on negative aspects within society. Watch the news for ten minutes and there is guaranteed to be stories about violence, corruption, dishonestly, disrespect, etc. As a global society, we need to shift our attention. Encourage people with stories of success; inspire improvement through positive innovations. This is the general philosophy behind positive reinforcement. We need to make sure the students are being encouraged to participate (not yelled at), following through when asked to complete a task (versus letting students run away) and then praising them for listening to our directions. By modeling positive reinforcement throughout the school day, the students are being given the praise they deserve while also providing naturally occurring examples for the caregivers to learn from.

When not working directly with the students, caregivers, or completing administrative tasks, I continued to help spread awareness about the centre. Through the recommendation of a German Occupational therapist, who visited the centre a couple weeks ago, I have gotten in touch with a woman named Caroline Pongo. She is the creator of Beans & Gari, an educational puppet theater performance. Our hope is to have her bring the show to the centre come September.

Every day there are new developments with the centre. With Auntie Serwah back from Heartspring, she has made a point to emphasize the importance of attitude. Baaba has just completed an Autism course and plans to train the staff in the coming weeks. Nana Akua, a speech therapist, has the next couple weeks off of work and has said that she would like to help brainstorm ways to fundraise. Never a dull moment here at AACT!

…or in Ghana for that matter! Yesterday, I was invited to attend a traditional Ghanaian funeral. This was an all day event, filled with dancing, drumming, eating delicious Banku & stew, while trying to stay cool under a large Baobab tree. I crawled into bed last night exhausted.

Thanks for reading!
Casey

New interactive way to teach number identification!

Saturday August 8, '09

Once again, another busy week here in Ghana…

Every morning at the centre, the students sit in a circle and routinely sing good morning to each other and participate in a variety of other basic welcoming songs. It is a wonderful opportunity for the students to learn appropriate social interactions and communication. Equally as important, it is a time for the staff to be modeling and positively reinforcing this behavior. This week I was able to participate in the morning circle not only to help with these goals, but also as a way to continuously build the relationships between myself, the staff and students.

One of the goals of the Global Autism Project is to also help establish more connections for AACT. Ultimately, these are local professionals and community members, as to keep with our sustainable practices. Although sometimes due to limited resources this is not as readily available. To my knowledge the centre does not have an occupational therapist and in fact no one knows if there even are any in Ghana. So I turned to the internet, where I quickly found a couple different US universities that had conducted OT service projects in Ghana. The most overwhelming response was from Stacey Reynolds, an assistant professor at Virginia Commonwealth University Occupational Therapy Department. This past May, she came to Ghana with a team of students. They were involved with a few different service projects, but mainly all relating to OT services. This week we have started communicating about how they could most effectively help AACT, while also understanding the idea of sustainability.

Along the same line, I have been exchanging emails with one of the academic directors of the School for International Training – Ghana. 5 years ago, when I first came to Ghana, he was actually one of my directors. He works in conjunction with the University of Ghana and has shown immediate interest in our efforts to raise autism awareness.

On Monday and Tuesday afternoons, Jessi (an Ikando volunteer studying special education at Vanderbilt) and I conducted trainings on effective lesson planning. This involved basic lesson planning order of operations, as well as brainstorming with the staff on creative ways to teach these lessons. Throughout the week we not only saw the staff utilizing some of these ideas, there was one caregiver that came the next day with an entire week of lessons plans written out for her student!

Thursday, two art students from the University of Ghana came to conduct an art therapy session with all the students. Then on Friday, our good friend Louis Wonder conducted a drumming and dance workshop with all the students and staff. Every day there are new families walking into the centre, interested in services. There is actually such a need, that AACT currently has a waiting list for students.

Thanks for reading!
Casey