Ron Sandison interviews Fox 8 News Cleveland Anchor Autumn Ziemba
1. What were some early signs your son Simon was on the autism spectrum?
Simon experienced a regression after the age of two. He lost almost all of his words, stopped counting, singing, playing, and making eye contact. He began to display some obsessive behavior, like lining up his trains, and spinning repeatedly. He also developed some out of the ordinary eye movements, like looking at items out of the corners of his eyes. He was diagnosed with autism at age two-and-a-half.
2. What was your family’s greatest fear when Simon was diagnosed with autism?
That Simon wouldn’t be independent or lead any type of typical life. That he wouldn’t experience friendships or love or joy.
3. What has been your greatest challenge raising a child with autism and pediatric cancer?
Simon has taught me levels of patience and trust that I never knew possible. Our greatest challenge, however, has been raising a child with autism who also has extreme medical needs. Simon was diagnosed with acute lymphoblastic leukemia three months after he was diagnosed with autism. Going through that intense treatment with a child who is limited verbally has been tremendously difficult. But getting through this time and making it to survival will be the greatest triumph of our lives.
4. What were some therapies Simon received and how did they help him?
Simon receives ABA, speech, PT and OT, as well as art and music therapy and swim therapy. All have been crucial to his progress and building his strength and development. ABA and speech were most crucial in the beginning because his regression was so severe. PT became crucial too since his early chemotherapy caused neuropathy that made it impossible for him to walk for more than 8 months.
5. How have you helped Simon learn social skills?
We enrolled Simon in a preschool program at the Lerner School through the Cleveland Clinic Center for Autism, as soon as he was cleared to attend school by his oncologist. Learning among peers has been life changing for Simon. He’s made so much progress that we are exploring adding a couple hours a week at a nearby typical preschool program to further encourage his group and one on one peer interactions. He also has a sister at home who plays and works with him and who has been crucial in getting him to socialize on a peer level.
6. What treatment did Simon receive for his cancer?
Simon received multiple chemotherapy drugs as well as high dose steroids and other medications as part of his 3 ½ year treatment protocol. Now that he is in remission and in maintenance therapy, he gets daily and weekly oral chemotherapy, as well as a monthly chemo infusion and a quarterly spinal tap with chemotherapy. He has 17 months of treatment left.
In the film below Autumn laments that only 4 percent of moneys raised goes to research for childhood cancer.
7. When you did you began to feel hope again after all these challenges?
The hope came once we started seeing real progress. When words turned to phrases again, and his counting and singing resumed, we were floored! When Simon repeated “I love you,” our hearts soared. He now engages so much with us, it’s incredible to see. He seeks out our attention and eye contact. He dances and laughs. It’s remarkable. I now know that his life will be whatever he makes of it. Anything is possible for him.
8. How has your family and friends helped you with Simon’s battle with cancer?
We couldn’t have done any of this without them. My in-laws relocated to Cleveland to help us. All of our family members have pitched in with child care and getting kids to and from school. Friends sent meals and gift cards after his cancer diagnosis and even helped to arrange house cleaning, since he was so immune compromised in the beginning of his cancer treatment. The support was overwhelming and so appreciated. It still is.
9. How has Simon demonstrated the heart of a warrior through all his trials?
Simon never lets anything phase him. He walks into treatment with a smile. He greets everyone at school by name. He’s a ray of sunshine. Very rarely has he shown fear. He’s been nothing but brave and triumphant.
10. What advice would you give to parents who have a child with autism?
Never give up. Fight every day for your child. Fight for his/her needs, whether it’s therapy or medical or IEP-related. Follow your gut. Don’t let anyone talk you out of something you know your child needs for success. And be gentle on yourself. Get breaks when you need them. Love your child with all your heart. Don’t be afraid to seek out therapy and support for yourself too, and try to connect with other autism families.
11. What are some lessons Simon has taught you?
Nothing is impossible. Life is short. Love with everything you have.
12. Share a humorous story.
So many! As Simon was regaining words, he unfortunately overheard someone swearing and picked that word up right away! We had neighbors over and he walked by them, dancing down the stairs and singing the swear word at the top of his lungs! Simon now loves to request his favorite songs on our Alexa at home. He’ll say “Alexa, play You’re Welcome by Dwayne Johnson.” He’s a big Moana/Maui fan!
Autumn Ziemba is an Emmy and Associated Press award-winning journalist who joined the Fox 8 team in the summer of 2009 as a general assignment reporter. She anchors the weekend edition of Fox 8 News in the Morning with Roosevelt Leftwich.
Autumn and her husband, Mark, are the proud parents of Maren and Simon. Simon was diagnosed with autism and is a cancer survivor. Simon’s diagnoses spawned their family’s advocacy for children with special needs and those fighting pediatric cancers. You can contact Autumn at Autumn.Ziemba@fox8.com.
Ron Sandison works full time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of Autism Society Faith Initiative of Autism Society of America. Sandison has a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom published by Charisma House and Thought, Choice, Action. He has memorized over 10,000 Scriptures including 22 complete books of the New Testament and over 5,000 quotes.
He frequently guest speaks at colleges, conferences, autism centers, and churches. Ron and his wife, Kristen, reside in Rochester Hills, MI, with a baby daughter, Makayla Marie born on March 20, 2016. You can contact Ron at his website www.spectruminclusion.com or email him at firstname.lastname@example.org.