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Access Press - Minnesota's Disability Community Newspaper

Josiah’s Fire shares family’s autism journey

by // April 10th, 2018

By Jan Willms

A diagnosis of severe autism disorder for son Josiah rocked the lives of parents Tahni and Joe Cullen. At 22 months Josiah became nonverbal. Family life became an emotional, financial and spiritual roller-coaster ride.

Life changed abruptly when Josiah began writing on his iPad. Words of great wisdom, spirituality and understanding were written daily by a seven-year-old.

Read the writing and the Cullen family’s experience in Josiah’s Fire: Autism Stole His Words, God Gave Him a Voice, a book Tahni Cullen co-authored with Cheryl Ricker. Ricker is a writer of supernatural true-life stories that reflect God’s presence.

Ricker and Cullen met by chance at a Christian women’s media conference in the Twin Cities. Ricker questioned attending due to a cold. Cullen was a fill-in guest speaker. They were seated together and a connection was made

Cullen, who considered self-publishing Josiah’s story for family and friends, was encouraged by Ricker to co-author a book.

Ricker and Cullen shared similar experiences as parents. Ricker also has worked with people with disabilities. “I really like to help people, and writing is my thing,” Ricker said. She befriended Josiah, and he would write to her.

The women enjoyed collaborating and enjoyed a unique partnership. Ricker helped Cullen winnow down details of life with Josiah. For much of the book, they used Josiah’s words, stored on his iPad.

The book also drew from Cullen’s blog. “In going back and recounting things for this book, I had to relive all that,” she said. “To go back and look at baby pictures and just feel those emotions again was a very raw process.” Yet it was also healing.

“It’s more difficult writing a book with someone, but I enjoyed it,” Ricker said.

“There is something powerful about writing with somebody,” Cullen said.  “Obviously they have skills that are different from yours. But when you are trying to be authentic about what is happening in your life, and you’re trying to really be raw and out there, you can run into some fear of that.” She appreciated Ricker’s support and encouragement.

Josiah’s communication skills leapt from using pictures to writing sentences that were wise beyond his years. Cutting parts of his writing was difficult for the co-authors, who agreed to not edit or change the boy’s remaining words in any way. Cullen describes Josiah’s first language as poetry, full of images and symbolism is unique to him. Josiah’s writings made a huge difference for his family.

“When Josiah began to communicate with us, that opened up a whole new relationship,” Cullen said. “Not only was it helpful to know little things like his favorite color or what he liked to do, but he was able to communicate things that were very helpful. One time he told me there was a staple in his shoe. How would I have known that before?”

The writing experience also taught Cullen about the “God connection” many children with autism have. “I know when we got the autism diagnosis, there was quite a bit out there as far as treatments and theories. But one thing I did not see was about the spiritual and emotional journey you are on when faced with something that is essentially an unresolved issue.”

Cullen hopes the book resonates with parents of children with autism or special needs, and tell them there is hope. The audience is much larger than she expected. “People are identifying on a level that is just humanity. People know what it’s like to face issues that make you down on your hope, or try to snuff out your faith, seemingly insurmountable obstacles. I have had a number of people who are therapists, art teachers and special education teachers tell me that having read this book, they are treating kids differently.” Teachers realize their students with varied disabilities have thoughts, desires and gifts.

Teenagers also enjoy the book, which Cullen found revealing. “They know what it’s like to face rejection, bullying and insecurity. They can identify, and realize that if this kid can make it through life, maybe they can too.”

Josiah continues to write and has a Facebook page, Josiah’s Fire. He has issues with body movement, and still isn’t verbal. “A lot of times when he writes I have to keep bringing him back, working on getting his sensory system calmed down so he can sit and pay attention.”

The coauthors maintain their friendship. Ricker has found herself living with disability. On the September 2016 day Josiah’s Fire was published, she was diagnosed with cervical dystonia, a muscular disease that makes it hard to walk. Like the Cullens, she seeks hope in a tough situation.

One message from Josiah’s Fire is that even if the future may not look like what we have planned for our children, it can still be good, said Cullen. “They still count. “We can help them explore what that future will be for them.” From her own family experience, she added, “When the whole world says you have to learn how to cope with this, I will turn and say you have to learn how to hope.

 

 

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