Carmel Valley mother and son share invaluable advice though book ‘A Full Life with Autism’
By Kathy Day
Like most young adults, Jeremy Sicile-Kira wants his own apartment and a job. He also wants to be a writer.
Unlike most others, though, he’s autistic — and he’s a published author.
He and his mother Chantal Sicile-Kira, the authors of the just-released “A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence,” will celebrate the new work at a book signing from 4 to 8 p.m. on Monday, March 26, at the Poseidon Restaurant.
“He has dreams,” his mother said. “But he needs support for everything.”
He wants to be independent and earn money, she added. “I asked myself how as a parent do I help my child live the life he wants to live.”
Their new book aims to be a practical guide for families as their autistic children move into their adolescent and adult years. It takes on subjects such as finding housing and financial assistance to making friends and having sex.
Jeremy, who was 21 when he graduated from Torrey Pines High School and gave a memorable speech at the 2010 commencement, was diagnosed as severely autistic at an early age.
Today he uses voice output software and has support staff who help him with his writing as well as daily living. He’s been attending MiraCosta College, but is on break for now. He’s spent the past year and half working on the book and writing for
- He also has become a youth advocate — one of the first three -- for the Autistic Global Initiative.
His mother Chantal, who was working with autistic adolescents before her son was born, said, “Even though I’m supposed to be an expert, I was surprised at how difficult it was.”
Jeremy is one of what his mom described as “A huge number of individuals with autism reaching an adolescence adulthood.” That means a new host of challenges for them and their families. Besides the need to find services that are not mandated for adults, there are issues that many don’t want to talk about ranging from abuse by caregivers to what to do after the parents are gone.
There have been times since Jeremy graduated from high school that they thought they would get more understanding from the employment office like they did at Torrey Pines, Chantal said. “You’d go to one place and they would really understand. At others, they didn’t have a clue – and I’m an advocate, but sometimes the system is like David and Goliath.”
Using his computer and with his mother’s help, Jeremy answered questions for this report. When asked what he feels is the most important point of the book, he responded: “The key point of the book for me is that people understand how to help young adults live with autism. Really I greatly want people to understand the nature of autism and how it can make life difficult. Frankly giving knowledge can make a difference, and I hope to do that with this book.”
He wrote that he “wants people to realize that just because we with autism act different does not mean that we don’t have the same dreams as neurotypicals. I also want people to be glad they read the book.”
His mother explained that “neurotypical” is the term now used for “normal – people without learning difficulties or a different way of thinking.”
An award-winning author and speaker who writes for The Huffington Post and PsychologyToday.com, she said this book was the hardest to write but it’s also one of the most important for the autistic community. Articles that Jeremy had written for the campus newspaper at MiraCosta helped shape the book, she said.
They worked together closely, with him producing about a third of the book, she said. Jeremy would write on his computer and his aides would cut and paste and read it back to him so that he could help edit.
Each chapter ends with tips from Jeremy. “That was his idea,” his proud mom noted.
Here’s what he singled out as his top three tips:
• “Love your adult child for what he is and not for what he could become. We very much want to become better people, but we really need to be accepted for what we are without being expected to be neurotypical.”
• “Do not be afraid of the future. Face your fears and prepare for the future you and your adult child envision. Having the support your child needs can help them become the person they want to be. Freedom can be great but difficult for your child because it means taking responsibility for the choices involving their life.”
• “Have high expectations of your child. Parents and support staff need to believe the person is smart. We should have realistic goals, but we should also have frankly high goals. If the expectations are low, so will be the results. Help them think. Rave when they work on their goals. They will dare to be great because they have your support.”
It was a long process but one that they both value and believe will help other families. During the year and a half they worked on it, she said he kept repeating “Always believe in your child. If you believe he will.”
“We are very lucky we have found a way for him to communicate,” she said. His abilities “can be validated … It’s not about me convincing people. It was his goal to graduate high school. He convinced them he could do it.”
In his e-mailed answers, Jeremy wrote: “I justly felt that I was very lucky to have the opportunity to help parents understand how and what their teenager with autism needs to learn to be an adult. When they leave school they must be ready for real life. Greatly I felt joy that I could help parents understand their child better.”
If you go
Book signing and celebration for the mother-son team of Jeremy and Chantal Sicile-Kira’s book “A Full Life with Autism: From Learning to Forming Relationships to Achieving Independence.” Books will be sold at the event.
4-8 p.m., March 26
The Poseidon, 1670 Coast Blvd., Del Mar
A good cause:
The Poseidon will donate 20 percent of what is sold in the cocktail lounge to The Autistic Global Initiative (AGI), a program of Autism Research Institute, for the Youth Advocacy program.