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!

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4 responses to “Autism in Tuzla Day 2

  1. Amazing, My Dear….. Truly amazing. I will keep you and your team in my thoughts this week…

  2. Everyone helping out there is amazing! “Crying, laughing, and learning” were some of my best memories from the Bosnia 2009 trip. You have my support from the east coast!

  3. Lyndsey Bustos

    You are all making such an impact! I know the families are going to be so sad when you leave but hopefully they will feel empowered to continue to help their children.

  4. This is such wonderful work. I hope they can keep up the momemtum and spread the experience through out the country for all affected children. Keep up this great work!!!!

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