Hello to all reading this. My name is Joey Wagoner. I am part of the home intervention and class room team here in Tuzla, Bosnia. I have been studying treatments and working with children diagnosed with autism for over two years now, as well as being personally affected by having a 14 year old brother who has been diagnosed with Autism.
Today marks the end of the team’s third day in Tuzla. Although one can observably see the team beginning to be affected by the lack of sleep and rest, it is still just as easy to see the spirits radiating from the team. The tone of their voices; the laughter that accompanies the end of a story; the emotion that is unleashed into every verbal behavior that occurs, shows every team member’s dedication to not only this project itself, but to the families and overall goal of what we are accomplishing. Regardless of how prevalent and understood it is in certain countries, people all around the world are effected by this developmental disorder. Some people hear about it from the news. Some hear about it from a friend, interpret the information, then go about their day. That is not how it is for the families here, or for that matter any where else in the world. Autism affects the child and family from the moment they open their eyes until the moment they lay their head down at night to receive some well deserved sleep. People who live with this disorder live a lifestyle that one can only understand at a surface level. To understand the full emotional pull and drainage it has on faimilies, you have to start from the beginning.
For example, one family that I personally visited today have a 15 year-old teenager who was diagnosed with autism at the age of two. They had received a minuscule amount of occupational and language therapy for him, but due to unforeseen roadblocks, it unfortunately had to halt. This child, beautiful, intelligent, and kind-heated, experiences something that we can only fathom. The parents bring a new definition to the word dedication. They feel; they provide; they put all that they can put into their child so he can be content and happy. I accompanied Dr. Marianne Jackson from California State University Fresno to this family encounter. Upon our initial arrival, we could immediately sense that we were not entirely welcome in the home. Although the family provided us with turkish coffee, juice, and a type of cake that can make you savour for more merely by bringing it into a state of awareness, we all felt a certain amount of skepticism.
We were here to implement a treatment that is not well known here in Bosnia. And even what is known of it may have been projected in a bias manner due to subjective interpretation of an unknown treatment. They knew we wanted to help, but they were unsure of if we would really be helping. But this is understandable; parents, even if providing ineffective treatments, are none the less providing something because they care and want to implement a change not only for their personal life, but for the life of their child that they care so deeply about. But…back to the story at hand. After greeting the family, we interacted with the child, who was even more unhappy to see us then the parent. He didn’t know who we were, but he knew we were here for him. We engaged minimal with the child to avoid in SIB (self-injurious behavior), which began to occur once he figured out our purpose in his household. But once we engaged the parents and told them what we were there to do, you could see a change in their behavior. Their arms began to unfold; they began to lean forward in anticipation of what was coming next; smiles began to appear in such a manner that it brought about smiles to all the people in the room. As well, you could see bonding taking place between the parents themselves. A recent statistic showed between 75-80% of parents who have children with autism end up getting a divorce. This disorder affects every aspect of the families life, even the love they have for one another. But these parents have what it takes. They began to slowly implement some of our suggestions…….and it worked. The child decreased their SIB’s and was engaging with the parent in an appropriate manner by the end of only a two hour session. You could not only feel the joy radiating from the parents, who held each other so lovingly, but even from the team members who were there, as well as myself.
By the time we left, we had developed such a rapport with the parents that next time I don’t see any trouble being welcome back in their home. As well, the mother had gone to the seminar in the morning (which had Speech Pathologists and Behavioral Psychologists speaking to a crowd of nearly 100 people who consisted of psychologists, speech pathologists, and parents about the effectiveness of Applied Behavior Analysis, Speech and Language Pathology, and Sensory Integration) and then rushed back to our visit to their home to see what was talked about in action. As well, she reported she would be going again tomorrow then rushing back for a final home visit with their family. Although that may not spell dedication itself, I don’t think a Webster Dictionary could provide a better definition.