Albanian family’s journey with autism lands them at Thompson Center

COLUMBIA, Mo. (Aug. 2, 2016)–Just a few weeks ago, Amelia Klleci celebrated her eighth birthday here in Columbia, far from her home in Tirana, Albania, a Balkan nation of about 3 million people. Her family’s journey has been a long one to this day, across oceans as well as years of struggle as her parents, Xhevi and Shkëlqim, have managed Amelia’s treatment for autism.

Their journey began when Xhevi first noticed developmental changes in Amelia around her first birthday. The few words, the imitating and the social cues she had learned as an infant began to disappear. Xhevi would find her sitting in corners of the house, not responding to her name.

When Xhevi brought her to a specialist in the capital, Tirana, from their home in Gjirokaster when she was about 15 months old, he confirmed that Amelia had autism. Amelia would start receiving services in the capital within 5 months, including occupational therapy, behavioral therapy and, later, speech therapy.

Xhevi worked tirelessly to find services for Amelia.

“I was not quiet,” she said.

Living in the capital, Tirana, then became Amelia and Xhevi’s new reality, while Shkëlqim remained in Gjirokaster for work. The country’s health care system offered care for children with developmental delays, but only on an inpatient, rotating basis. Every two months, Amelia and Xhevi would spend two weeks in the capital’s state-run hospital, sharing a room with three other children and their parents.

Even in the inpatient setting, Xhevi said the medical staff was not equipped with the training to help her daughter. Many of the other children in the hospital had other developmental disorders, like Down syndrome or cerebral palsy, and few were trained in evidence-based, effective therapy techniques.

“Many of the staff were nurses and teachers serving as therapists,” Xhevi said. “They did not have the training to serve the needs of our child.”

Xhevi and Amelia lived with this schedule for the next 5 years, until Amelia’s sixth birthday, when specialist services for children end in Albania. She entered the public school system, which offers no special education services or supports for children with special needs. All children are placed in mainstream classrooms, such as Amelia’s kindergarten class of more than 30 children, regardless of learning needs and are taught by one teacher with no training in special education.

“She was not prepared to go to school,” Xhevi said. “If she had someone in the classroom to help her, she would do better. A law exists that these children should be integrated into mainstream classrooms without having extra support.”

Faced with this lack of services, Xhevi continued to speak up and reach out to find Amelia more help. While researching all she could about treatments and research, she would send hundreds of emails over the next year and a half to centers and specialists around the world.

“I wanted to have real therapies with real doctors,” Xhevi said.

One social worker told her about the Autism Treatment Network, or ATN, a group of 14 North American centers of excellence in autism care designated by Autism Speaks.

Xhevi contacted all 14 centers.

“They were very gentle with me, but they didn’t have enough funds to help us,” said Xhevi. Her family’s income from her husband’s work as a police officer couldn’t cover a trip to America without financial help.

Eventually, she connected with Alicia Curran, ATN Site Coordinator at the Thompson Center. Alicia is also a parent of a child with autism.

“From the beginning, she was willing to help me. She said she understood our challenges,” Xhevi said.

After about five months of planning and putting together community and center resources, Alicia delivered the good news in January that the Thompson Center would be able to bring Xhevi and Amelia to the center for services for the month of June. The Ronald McDonald House provided lodging for the duration of their stay, within easy walking distance of their appointments at the Thompson Center.

In addition to a formal diagnosis and treatment evaluation for Amelia, Xhevi worked with specialists to understand what she can do at home to help improve Amelia’s difficulties with communication and to be more prepared as she grows into new challenges. Amelia was seen by a developmental pediatrician, psychologists, occupational therapists, speech therapists, a dietician, and had more than 25 hours of behavioral therapy consultation and services during her four-week stay.

Behavior and occupational therapy work focused on independence with daily living skills, including self-care, dressing and daily routines. And, most of the work was parent-focused, so Xhevi could incorporate these strategies into their home lives.

“Xhevi was an excellent parent to train,” said Brooke Burnett, a training specialist and behavior analyst. “These adaptive life skills are foundational before she can tackle academics in school.”

Training also prioritized advancing Amelia’s social communication using visual supports, social stories, and other ways to prompt her to communicate. Many things that Xhevi had been doing, like preparing Amelia for their flight to the U.S. by showing her a model of an airplane and explaining the steps involved in air travel, were already on the right track.

“We showed her mom more sophisticated ways to do what she was already doing, and how to apply them to more situations,” said occupational therapist Brittney Stevenson.

Xhevi has an eager audience awaiting her in Albania, where she said families of special needs children are social outcasts in their communities. They find support in each other and share their experiences to learn from each other.

Her friends who also have children with autism are eager to hear what Xhevi learned from the Thompson Center specialists about effective supports and therapies with their own children.

“I learned a lot of things and I am sharing my new knowledge with my friends in Albania,” Xhevi said after returning home. “These parents are suffering so much. I worry for other children, especially for poor families who can’t raise their voice.”