Today, I would like to share my interview with Chantal Sicile-Kira, mother of an autistic son, author and speaker. Thank you, Chantal, for doing this interview with me.
1. Can you share with my readers who you are and a little bit about your son?
I am an advocate, award-winning author and speaker known for providing practical tips, hope and inspiration to parents and educators in the autism community.More importantly, I am the mother of Rebecca (17), and Jeremy(21) who is severely impacted by autism.
My first experience with autism was working at a state hospital in California, teaching young adults self-help and community living skills in preparation for de-institutionalization many years ago. Little did I know that years later, I would be using the same teaching skills with my son!
When my son was diagnosed with autism, I was told to find a good institution for him and to place him there. I have – it’s called school! Jeremy, who communicates mostly by pointing to a letterboard or litewriter (as seen on MTV’s True Life “I Have Autism”), passed the California High School Exit Exam on his first attempt and will be graduating in June with a full academic diploma. He writes a column for his school newspaper, and is writing a book about his life with autism. He plans on attending community college. His career goal is to raise awareness about autism by providing presentations and training to school staff and students on autism and inclusion.
2. What have been some of the hardest things to deal with in raising your son?
It was hard as a new parent, to go to the local playground and see how the ‘normal’ children were developing. My son was not playing, not reaching out towards, others, not talking. To top it off, the medical professionals I consulted kept telling me there was nothing wrong with him. Once they acknowledged there was a problem, they could offer me no solutions.
One of the hardest things when Jeremy was young was convincing some of the educators and other professionals that he was able to learn; to make them question their methods rather than his ability. I had to file due process against school districts twice in order to get a fair and appropriate education for him. However, once I found a method that worked for Jeremy in order to teach him academics and to give him a way to communicate, he was able to show his educators his capacity to learn, and the barriers fell away.
When he was little, it was very hard figuring out how to reach him, how to teach him basic skills. Nothing seemed to work for Jeremy as it did for other children with autism.
I had to quit my work (in TV and film production) in order to teach him and to do physical therapy exercises with him every day.
To this day, although he has proven how smart he is, his motor skills and sensory processing challenges are such that he requires supports for many aspects of every day life. We are working on helping him become as independent as possible, by trying different therapies to work on motor skills and sensory processing.
It is hard now as a parent, having an adult child who would like to have friends and girlfriends - like any other young man – and trying to figure out how to help him progress in this important area of his life.
We are forever grateful to the educators, professionals, instructional aides, and support staff who have believed in Jeremy over the years and worked so hard in helping him to learn. They have made all the difference in our lives.
3. What have been some of your greatest joys in raising your son?
The greatest joys include those moments when we knew he was understanding what was going on around him – the first times he said a word – “key” when looking at a key; the first time he spelled out to communicate; when he took his first multiple-choice test (it was in History, I think) and passed; when he started wiring his book and explaining what his behaviors meant when he was little and what he was thinking, as well as what methods I was using helped him and why.
Anytime he learned something new, that his ability to use his motor skills improved – all these seemingly little steps represented so much work on his part to get his body and mind working together- has given me much joy and hope.
Another joy is all the wonderful people over the years who ‘got’ my son, who taught him, who offered him opportunities to learn, to make connections with others and become a better person. These people will never be forgotten.
4. Can you tell my readers about the book you have written "41 Things to Know About Autism."
Outside of the autism community, people don’t have access to information about autism other than what they hear in the media. Wherever I go and people find out that I am an expert on autism, they start peppering me with questions that they want answers to: “Does vaccines cause autism?” “Is there really more autism now?” “I think my child has autism, what do I do?” “Why does that kid act the way he does?” “My friend/daughter/son has a child with autism – what can I do to help?”
This book answers all those questions and more in a clear understandable way. Parents of newly diagnosed children will find this a good first book to read; more experienced parents will want to give this to their friends, relatives, neighbors to read so they can understand about what is going on in their lives, how autism has impacted their family. I wish I’d had a book like this when my son was younger- I would have given it away to all the important people in my life so they would understand Jeremy more. I hope it provides better understanding in the general population about people on the spectrum and their families.
For more information on Chantal Sicile-Kira, visit www.chantalsicile-kira.com
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Comments (1)
I wonder if Chantal was able to find a good occupational therapist to work on those deficits with her son. She mentioned motor skills and sensory processing, which is what we OT's work hard to improve in children with autism. If she did have a good OT, it would have been nice to see a little mention on here, seeing as how we are the therapists who often get overlooked in the therapy team.