LIVINGSTON, NJ — Days before Mother’s Day, Livingston mom Heidi Rome published a book that was inspired by a conversation she had with her nonverbal son after a new technology enabled him to share his thoughts.
Her novel, entitled “You Just Have to Love Me—Mothering Instructions from My Autistic Child,” is an extension of Rome’s mission to help other parents navigate the challenges of raising a child with autism spectrum disorder.
“Presuming competence in our children and ourselves is the core loving premise of the book,” said Rome, who is also the founder of a local support group called Mom’s Spectrum Oasis.
When her son, Ethan, learned how to use a Spell-to-Communicate device at 9 years old, Rome said their exchanges completely changed her perspective on autism.
She shared that when she asked Ethan what his thoughts are about God, the following conversation ensued, with Rome asking questions verbally and Ethan typing his responses:
- Ethan: God is in my heart and He will always protect me.
- Mom: Did He tell you that?
- Ethan: When I lived in heaven, He told me that.
- Mom: Do you remember that time?
- Ethan: When I lived with God, I wasn't named Ethan yet.
- Mom: What was your name?
- Ethan: I was not to remember it. I had many before.
- Mom: Do you remember anything from that time?
- Ethan: I remember life with no body. When you go to heaven, there are no bodies. Just spectacular energy.
- Mom: Did you choose to come here as Ethan Rome?
- Ethan: Yes. I picked to be me and have many challenges.
- Mom: Did you pick us as your family?
- Ethan: We were family another time. We didn't live here. We lived in a small group but got hurt by warriors.
- Mom: Why did you choose to come back with challenges?
- Ethan: I will be greatly rewarded in eternity.
- Mom: Is there anything we should do to help you?
- Ethan: I have to complete my journey as prescribed by God.
- Mom: Does it feel longer than you thought it would be?
- Ethan: Yes. The journey is unfathomably longer than expected.
- Mom: What should we do to help you on the journey?
- Ethan: You just have to love me and that is your job. The rest is my job to do.
Reflecting on her feelings after reading Ethan’s comments, Rome said she made “a profound shift in [her] own attitude about autism, from fearful victim to purposeful role model.”
That pivotal moment ultimately facilitated Rome’s mission to develop a program that would inspire and support special needs parents, whose job is to accept and love their children rather than trying to fix or change them. She also realized that detaching herself from the emotions that autism elicits was essential to helping her son.
“Decisions need to be made with love and wisdom, not fear,” he said. “Letting go of anger, grief, jealously and other negative emotions results in clarity.”
Another essential realization was that parents of special needs children also need to make time for themselves.
“Moms being happy and peaceful is the most powerful way for her child—differently-wired or neuro-typical—to be happy and peaceful,” said Rome, who developed a seven-step program for herself that she believes will help other mothers in similar situations. “When I accepted my authority and privilege as Ethan's mom, things changed for me. I now realized that autism didn't happen to me; it happened for me.
“I became a student instead of a victim. My pain began to morph into purpose and my fear started to fade. Instead of fighting, I began to accept the fact that autism was my new normal.”
Through her recently published novel, Rome strives to “illuminate the path” for other parents so that they can be “heroes of their children’s autism journey.”
“I've made empowering other moms my life's mission, so that they can smile again, too,” she said.