A MULTI-DISABLED CHILD WITH AUTISM ELIAS IS A LIVELY AND INQUISITIVE BOY
Elias Björneling lives with his family in Trekanten outside Kalmar. Elias has been multidisabled since birth and needs personal assistance around the clock. He was exposed to the CMV virus before birth.
“I had a normal pregnancy and never suspected anything unusual,” says his mother Elenore.
CMV is a cold virus that affects most people during childhood. Elenore, however, was one of the 3% who had not contracted the virus, which resulted in Elias becoming ill from the CMV virus during the pregnancy.
When Elias was born, his parents noticed that something was wrong. Elias was physically tense and had difficulty keeping food down. The doctors examined him more closely and discovered that during prenatal development he had had meningitis, which had caused cerebral palsy, autism, lactose intolerance and an undeveloped stomach. Last fall, Elias also had his first nasty epileptic seizure.
“Elias’s eyes roll upwards, it is as though he is unconscious and you cannot make contact with him,” says Elenore.
However, despite his disability and illnesses, Elias is a happy and inquisitive boy, who started to crawl just a few months ago and has a whole new world to explore.
“Elias has a baby walker in which he is learning to walk. Hopefully, he will develop and be able to learn new things, albeit much more slowly. He is much like an 8-12-month-old baby in terms of development.”
When Elias was two years old, the family came into contact with Assistanspoolen for the first time.
“Back then, we were in urgent need of help. We tried to take care of Elias ourselves during the first years, but it became too much for us,” says Elenore.
Elias has two regular assistants, Martina and Elin, who work day and night shifts with Elias on weekdays while the family takes on the assistant role at weekends.
“It’s important for us that sometimes we can just be a family. It’s hard to have someone else in your home around the clock. That is why Assistanspoolen is so good, because as a family member you can be involved and choose assistants. That’s very important,” Elenore explains.
Assistanspoolen has provided support for the family on several matters. When they first applied for personal assistance, the Social Insurance Agency granted them only 32 hours. However, support and reasoned arguments from Assistanspoolen were instrumental in the decision being changed to 129 hours of help from assistants per week.
“Assistanspoolen is competent and has experience of families in similar situations. For us, this is a whole new world,” Elenore explains.
Elias likes activities. He loves being out and going to open preschool. One day a week he also goes to a toddlers’ group, where they sing and dance.
“He likes to go on the bus and is really fascinated by lamps and lights. He also likes to browse through books and magazines and is very interested in looking at the pictures. We hope that we will be able to learn how to communicate using pictures,” says Elenore.
“We also usually take part in Assistanspoolen’s boat excursions, Christmas parties and training sessions, where we can meet other parents who are in a similar life situation, and for Elias it’s an exciting adventure and a chance to meet other disabled children. There is such an incredibly good feeling of community and it’s amazing to see all the joy and happiness,” says Elenore.
In addition, the family has completed a training course for relatives about personal assistance, which was organized by Assistanspoolen.
“It was really helpful and above all important to meet others with similar problems and situations, and have an opportunity to exchange experiences.”