Book tells story of raising a disabled child in effort help other parents

From Columbus Local News in Ohio:

A local woman is hoping the story of her eight-year-long struggle -- and those who helped her along the way -- can help parents of children with special needs better understand their own situations.

A Beacon of Joy: Finding Peace and Answers When Your Child Has Special Needs is the first book by Sue Bastaja of Powell.

The book, released in June, is an account of the eight years Bastaja spent caring for her daughter, Mary, who was afflicted with spastic quadriplegic cerebral palsy. It is a very severe form of cerebral palsy.

"She really only had a little bit of use of her left hand, she didn't use her right hand and she didn't walk," Bastaja said.



Mary was born with misplaced ribs and an asymmetric chest cavity, which, as she grew, caused her right lung to be compressed. She also suffered from asthma, was allergic to protein in food and had severe scoliosis, necessitating spinal fusion surgery.

Despite these challenges, Mary learned to get around using a motorized chair and to communicate via a computerized talking device.

"Mary was a very happy child in spite of all she had to go through," Bastaja said.

She died in April 2006 at the age of 8 due to respiratory failure. Bastaja began writing A Beacon of Joy shortly after Mary's death.

Bastaja wrote the book to encourage other parents who have found themselves in similar situations with disabled children and to let them know of the services that are available to them, particularly in Franklin and Delaware counties.

"I really wanted people to know that every life is worth living, even a life with severe handicaps, and that there are services available to help parents," said Bastaja. "Parents don't need to feel like they're alone."

Bastaja did not know about the myriad of services available until about nine months after Mary was born, she said, which meant that nine months passed before anything was done to help with Mary's development.

"I don't want that to happen to anyone else," Bastaja said.

Communication was the biggest struggle Bastaja faced with Mary. Just getting a child with severe cerebral palsy to be able to say "yes" and "no" is a challenge, but eventually, thanks to the computerized talking device mounted on her wheelchair, Mary was able to carry on conversations.

"A whole new world opens up for them when you can give them a communication system," Bastaja said.

Though a good deal of the book consists of advice, it is also a detailed accounting of Mary's life and daily struggles. Milestones include the day she got her first wheelchair through Ohio Medicaid, the day she put together her first sentence thanks to her computerized talking device, and the first visit from the early intervention nurse when she confirmed that Mary was not developing as Bastaja's son, Robert, had.

"It was such a wonderful moment to realize that there was help and that from this point forward, she could get the services that she needed from people," Bastaja said.

Though trying, the experience had a good effect on Robert, now 14, Bastaja said -- it helped make him mature and empathetic beyond his years.

"Having a sister with special needs was so wonderful in forming Robert's personality," she said.

Bastaja had a number of the therapists and doctors who worked with Mary review the book to ensure its accuracy, she said.

Bastaja is Catholic, and the book also contains advice from a religious standpoint, but it can be applicable for anyone from any religion with a special needs family member, Bastaja said.

"Any person that works with children who have special needs could definitely learn from Mary's story," she said. "It's a positive, affirming book about God's purpose for each of us; so even all the people I know who don't have anybody in their family who has a special need have still really enjoyed it."

The book is not the only way Bastaja -- and her daughter's memory -- are helping others. Bastaja volunteers for the Delaware County Board of Developmental Disabilities, serves as co-chairwoman of the board of directors for Powell-based Partners in Play and and is also serving as a Medicaid provider, taking care of a 3-year-old girl who has cerebral palsy.

"She's got a lot of the same challenges to overcome, but she is doing so well because she's getting intensive physical therapy," Bastaja said. "It's just a real pleasure to see her successes and see how I can help her."

Even the motorized wheelchair Mary once used is being utilized to train other children with special needs in how to drive them.