Wednesday, July 6, 2011

A Wonderful Workshop

Today started off being a hectic day with finalizing everything for the workshop. We managed sorting out a beautiful tent and an lcd screen for the powerpoint presentation.

At 10am parents started walking in, and because many were stuck in traffic, we waited until 11 then started the talk. Emily did great, as I knew she would! The questions were asked during the presentation which led it into many discussions during the talk. The parents got some great information and spent plenty of time after the workshop just talking to each other and sharing experiences. We provided lunch then moved on to the workshop for the teachers and professionals after... this went even better I'd say. There was plenty of information that was given out and lots of ideas for the classrooms. Emily did great with this too.

Unfortunately we had a huge thunderstorm on way towards the end of the talk, and tried to rush through in the end, but still got through everything. After the talk, the teachers and professionals got to meet with each other as well, and I had so many of them approach me to say that they loved it and really wish that we'd have more of these. They were very impressed with the work Kaizora is doing and with the Global Autism Project.

We had given out evaluations for everyone to fill out, and majority said that they definitely want more of this. Some said that just discovering Kaizora has been a huge relief for them.

Basically, things went great and everyone was happy. I will try and put effort into having more workshops at Kaizora and spreading the word more. Now that Emily has been in here and we plan on finalizing all the children's programs, I will be able to take out more time into such events. We're all really sad that Emily has to leave us, but we're all holding our breath for her to make her way back very very soon!!...

Pooja Panesar

Wednesday, June 22, 2011

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

Tuesday, June 21, 2011

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

Monday, June 20, 2011

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.


Friday, June 17, 2011

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

Thursday, June 16, 2011

School Visit on Day 2!

Today we had a bright and early start and as Emily says, “we hit the floor running”!
We put up the poster which looks soooo amazing!! Then we planned on the 2 consultations with Johnny’s and Sammy’s parents/aids. We then went and visited a school for children with disabilities. School H is doing amazing things for the children with the resources they have. They are in a low SES area but still do so much, which is something I find very inspiring.
We then went to School S where some of the children who come to Kaizora also go. School S is a mainstream education school in a higher SES area. There we had a wonderful and productive consultation with Johnny’s teacher, teacher-to-be, mum, and the head teacher. We managed coming up with some great ideas and goals, and also provided various strategies they can implement in the school setting to promote social skills among others. We talked about what Johnny should be doing in his next school year and how we can use the holidays to get him at par with everything.
Back at Kaizora we then meet with Sammy’s aid and mum and talked over behaviour modification in the classroom. This also went great and mum sent a text saying “Hi, thank so much. The aid says it was really helpful. She has been on a 1 week training in 2005 & no one has ever come to school to talk to the assistants like you have today”! We will be providing data sheets to help identify the ABC in Sammy’s behaviours in school, and hopefully having such a system in place will shed light on plenty more.
The consultation after that with Johnny’s mum went fabulous as well and we identified lots of goals and went over his progress so far. She was very happy with all the information, and some of the things we plan on doing while Emily is here is weaning him off his GFCF diet!
Overall, the day has been absolutely amazing, and I’m so excited for the next 2 weeks as well… everyday is a new learning experience!