Tag Archives: Tuzla

Autism in Tuzla Day 2

I am writing this blog on Tuesday night, Bosnian time. It is the end of day 2 out of a two week experience. SPG: CSI has come to Tuzla to accomplish 3 specific goals:

1) Co-host a 5-day seminar presenting evidence-based treatment and diagnosis information about the autism spectrum disorders

2) Meet with 10 families in their homes, determine the goals for their child, model treatment interventions and leave the family with programs that can be followed in years to come

3) Open the second classroom in Bosnia for preschool children that incorporates effective interventions for children with ASD. This classroom is intended to be used as a training center for university students and professionals from throughout northern Bosnia.

SPG:CSI intends to meet the goals by having a multidisciplinary team of 11 people from all over the US and Australia present imperative information to professionals and parents in a vaiety of formats.

For those of you who have been supporting SPG:CSI, these goals are not news to you. We have been in the process and planning stages for over one year. So let me, as the President of CSI and the fortunate team leader for these amazing professionals, tell you what has happened in only a very short time.

I met the team upon their arrival in Zagreb, and we began the journey to Tuzla together. As expected, people were tired and hungry, but they came with smiles and full of hope. We arrived on Saturday night. The hotel we are staying in is in a perfect location- close to the classroom and close to downtown restaurants. We share our grievances about the lack of hot water, the intermittent internet access, and cramped quarters, but we do so with a light heart. We know why we are here, and our purpose is greater and will give us more than what these acommodations can weigh us down.

Day 1: We began the day with little sleep. The night before we all laid in bed quietly, silently, while our minds raced about what was to come in the next two weeks. Would we have enough to give to the parents and children in Bosnia? Were we qualified enough to be here, to present such vital information, to work with children with such extreme needs? Would we be able to meet the needs? We are only ordinary people, with ordinary lives in the U.S., but somehow here it seems we need to be more! Do we have what they need?

At 8am we left our hotel to begin our various jobs. Some people left in small teams, paired with University students, to make home visits. There are three teams seeing a total of 10 families, for three visits each. On day one the goal is to identify the needs of the families, the goals for their children, and begin to implement effective intervention to help the families meet these goals. Most of the children are over age 10 years, and their goals include potty training, using a spoon to feed themselves, or learning to say their first words. Fortunately, we have a team of behavior analysts, speech therapists, psychologists, and sensory-based professionals ready to tackle any goals that the parents may want.

For the Family intervention team, their first day was filled with emotion. By the end of their first visit, all of their initial trepidations were gone. The families in Bosnia are incredibly receptive to learning new ways to teach their children, and are grateful to have us in their home. We are equally grateful that they allow us to share in their journey of autism.

Personally, my highlight of day one was when I got back to the hotel at the end of day one and I spoke with one of the professionals who had been to see a family in the home. He and the University students were talking about how exciting it was to go in the homes, to meet the kids and to begin intense training on essential skills. Then I hear Eduardo say, “Anna, we need to buy a toilet.”

??? What? We need to buy a toilet? Why?? Eduardo begins to tell the story of a 17 year old boy who lives in a home where the toilet is located outside the main home, and is what we consider a “turkish toilet”. Essentially, it is a hole in the floor. The child can go “#1” in this toilet, but he does not have the core body strength to hold himself upright to go “#2# in the turkish toilet. The family has chosen potty training as their number one goal. If the child can be fully independent in toileting, then the mother and father will be free to run daily errands and other essential tasks, and the 17 year old will not have to wear a diaper.

Currently, the mother waits at school during the hours her child is there in order to help her son go to the toilet. The school will not help the family potty train this young boy, and when considering his future, it is very bleak. There is no family freedom, and this child will never be fully independent unless he learns to go to the toilet alone.

So when Eduardo says to me that we need to buy a toilet, I was aghast! A toilet is not in our budget. A toilet is not something we have considered as a goal. A toilet is not anything I have ever had to consider as part of my profession! But nonetheless, if we buy a western toilet, the child will certainly learn to use the bathroom independently. So as a team, we began the 2 day search for a western toilet installation for this family. I will let Eduardo and the rest of the team explain the rest of the toilet story. For now, I can tell you that we have a temporary fix and tomorrow the potty training begins in earnest.

Day 1 continued: For those of us on the Seminar team, we began our day with excitement and fear. At 9am we had a press conference in which 3 TV stations and 4 radio stations were present. In addition, we were placed directly in front of the Vice President of Bosnia and her cabinet, as well as the Minister of Education, the Minister of Social Politics and Labor, and representatives from every level of government in Bosnia. We had coffee together, we smiled and shook hands in front of the audience, and we did our very best to represent SPG:CSI and all the people affected by autism.

At 9:30 am, the seminar began. We met people who came from Serbia, Montenegro, Croatia, and other ex-Yugoslav countries for our presentations. Even though they traveled far and wide, some people in the audience initially looked at us with hesitation and mistrust. Our panel of experts knew the information we were giving was the most up to date and reliable information in the field of autism, so we began the seminar with confidence. In the first few presentations there were very few questions, which indicated that people were not ready to connect with us. Day one went by without a problem, but we all left feeling like we needed to somehow break through the barriers that separated us.

Day 2:

Home visits continued. The search for the toilet continued. The suitcases that carried the toys and materials were emptied, the toys were out on the shelves, and the name tags were placed. The classroom needed only a few more hours of work before it was really ready for children to come. We have until next Monday. Stay tuned.

The seminar was incredibly successful.There was standing room only. We had double the attendees that were expected. As a matter of fact, at lunch we ran out of food because so many people came that were not expected. We must have gotten through to them on day one more than we knew.  Over 90% of the audience had made a connection with the speakers by the end of day one. When I told the “Welcome to Holland” story (feel free to Google this), there were tears in the eyes of many people, mostly parents. Maybe this is when they began to trust us. When Dr. Jackson presented part one of ABA, the professionals applauded and gave her high-fives. Tomorrow can only bring more successes!

Day 2 continued:

Home visits were emotional today. One particular child, who has been the focus of many professionals, has an intense preoccupation with cutting paper or cloth. She does not know how to use scissors and so she uses knives. Although she is an adolescent and almost fully grown in the physical sense, the problem with her using knives is that she is self-injurious and has had instances of aggression towards her family. If she has learned to hurt herself or others for attention, or to get what she wants, what could happen when she learns the full power of a knife?

The family was sure that removing her knives would result in a full out battle that would result in her screaming or hurting herself. When we asked if we could try to teach her new skills and get the knives away, the family stated that they did not think it would be successful but that we were welcome to try. Everyone stood back and held their breath. In a matter of a few minutes, our team was able to remove the knives from her and teach her how to use scissors. By the next visit, the child and the family should be safe and blunt-tip scissors will be the child’s new best-friend.

It is the small successes here that matter. It is when we connect with the people and hear their stories that we feel we are part of a larger, global family. It is then that we know we have a responsibility to give something back to the world in need.

Our team has shared their fears, their hopes, and their joys. We have cried together (and its only Tuesday!!!), we have laughed together, and we continue to learn from each other. Day 3 promises to be even better.

I cant wait for you to hear all that is happy and joyful, sad and scary, and all that is SPG:CSI in Tuzla 2010!!!

Good night!

Advertisements

The Final Countdown to Tuzla 2010

With only a few days to go before we kick off the 2010 Bosnia Autism Project, I wanted to give our supporters some very exciting updates!

The volunteer team arrives Saturday afternoon in Zagreb and then will travel by bus, finally arriving in Tuzla on Saturday night. SPG: CSI team 2010 has spent the last year preparing for the next two weeks. We have 11 professionals coming from all across the US and Australia ready to put in action all they have dreamed about until now. Even though they will arrive exhausted from the journey, I have no doubt the excitement of finally being able to meet the children and families will be energizing!

Regarding the seminar we are co-hosting with the University of Tuzla, which is called  “Autism: Our Reality”, we will be speaking on topics related to the treatment and diagnosis of Autism Spectrum Disorders (ASD) for the first 5 days. We were expecting to train 100 people each day, but yesterday I heard that we have more than 140 who would like to come on day one alone. Standing room only- I am so happy people are so interested! HOORAY!!!

While we have the seminar team speaking at the Hotel Tuzla, the Family Intervention team will be making home visits to families and children in the community. We are scheduled to work with 10 families in one week, with teams of professionals and University students seeing each family 3 times. The Family Intervention team has established goals individualized to each family, and at the end of their visits they will have provided each family with a home education, communication, and/ or behavior plan.

After we finish the first week of the theoretical training and home visits, we will begin practical training in the new Tuzla Kindergarten for children with ASD. We will have nine students in attendance from the local community, and we will provide intense training to 18 professionals and University students who will come from all parts of Bosnia. The long-term purpose of this classroom is for it to serve as a training center for other professionals in the future, and provide a place for University students studying speech-language pathology and special education to receive hands-on training prior to graduation.

Wonderful news for those of you who have been following our progress: The classroom is ready! The furniture has been assembled, the walls have fresh paint and the grass has been cut…it is just waiting for students to make it complete. Even the neighbors are now asking when the children will arrive!

We are looking forward to June 21st which is the first day of the seminar and home visits, and June 28th which is the first day of the classroom practical training.

Follow our blog to receive new updates and see pictures of SPG:CSI in action in 2010!

Tuzla Classroom and Training Center

Wonderful news! The classroom and training center has been identified and the Bosnia team has received official approval that we can use the space for one year! Professor Amela took some pictures from her cell phone and sent them to us. I love what she said, “I can see the castle it will be…”

It is quite a bit larger than the space we had in Sarajevo. This Kindergarten is currently empty and we have total use of the entire space, including the classrooms, kitchen, bathroom, dining space, etc. I will have more details of the space when I go to Bosnia in April. Stay tuned!

Tuzla 2010!!

Last week  the officers of SPG: CSI met and we were able to get formal approval for the goals proposed for 2010. The goals are certainly similar to what we had on the roster for last year in Sarajevo.

Last summer there were many professionals from Tuzla begging us to come to their city next.  I was told that there was only one school, where a “part of it” had some students with Autism. It made me question where the other children on the Autism Spectrum were… What was described to me was a situation where children with Autism were still hidden in homes, or sent to institutions when the family could no longer care for them. I was told there was no real system to educate children with ASD, and the prognosis was devestating. While the city of Tuzla has many professionals ready to learn and asking to be educated on strategies that work, they need support and a place to get hands-on experience in order to treat the population with Autism in Northern Bosnia. The Vice President of Bosnia, Spomenka Micic, and the professors and dean from the University of Tuzla, have formally invited us to return to Bosnia to address these needs.

After discussing the needs, and the costs, this is what we SPG: CSI has on the roster for Bosnia in 2010:

1) Co-host with the University of Tuzla a five-day seminar regarding evidence-based treatment strategies for children on the Autism Spectrum (Similar to what happened last summer in Sarajevo, but with the hope that we will have more people from Northern Bosnia in attendance, and possibly some people from Banja Luka).

2) Open a classroom in Tuzla for 3-5 yr olds that capitalizes on the visual strengths of children with ASD. This classroom will be run by the University of Tuzla and used as a hands-on training center for university students studying Special Education and Speech-Language Pathology.

3) Provide education to families with children 5+ years old, establishing an in-home treatment program which will focus on teaching academics, self-help skills and communication, in order to improve the quality of life. This team will focus on the “I do it, we do it, you do it” philosophy in order to encourage family independence. Given the extreme lack of services and options that have been available in Northern Bosnia, we are expecting to have a greater need for the services provided by the in-home team.

It is estimated at this time that we can accomplish these objectives in two weeks, and tentative dates are June 21-July 4, 2010.  The next step is to begin the interview process in order to establish the volunteer team. While it may seem early, there is so much work to be done between now and June of next year. When the team members are finalized, they will be meeting at least once per month in small groups in order to plan, prepare and organize materials. Creating five days worth of Powerpoints is no small feat. And identifying EVERYTHING that goes into a classroom, knowing we have to purchase the items in the US or make them here because things are not readily available there, is an incredible task.  As they try to anticipate what challenges they will face, the in-home team will be scouring books, stores and perhaps even their own cupboards trying to find items that will assist the families in educating their children with common, everyday materials.And I have not even begun to mention all that the University in Bosnia must do to prepare!!!

What is in front of us now is daunting, but so exciting. How great to be given this opportunity to serve and learn with our Bosnian brothers and sisters!!!

I have more great news to share with you re: the classroom in Tuzla, but will wait until I have ALL the information before posting here.