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Interview with Amalia Starr on her son with autism and her book
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Amalia Starr and Brandon
"Up close and too personal" says, Amalia Starr. "However, if answering these questions will help other parents I am happy to do so.”
After recently reading Amalia Starr's new book, Raising Brandon, there were a few questions that likely only another mother with a child on the autism spectrum would have. So, Amalia agreed to answer a few questions and her answers are both candid and something she's not had another reporter ask her in all her time promoting the book.
The book covers her early life and that of her son Brandon who was not diagnosed with Asperger Syndrome until well into adulthood, despite many behavioral and learning delays. As in any one's life, there are roller coasters of emotion to ride and Starr's is no different. In this interview, she answers more in depth how far her relationship has come with both of her sons and how her own life experiences affected Brandon.
Jenn: How has the diagnosis (Asperger Syndrome) helped Brandon's brother [Matt] to deal with his behaviors?
Amalia: Unfortunately, it hasn’t changed anything. Matthew still believes his brother can do better, and thinks he is faking it [behaviors] much of the time. He also believes Brandon is sometimes just lazy. Brandon can do things one day and the next day he may not be able to repeat the same task. It is difficult for Matthew to understand his behavior, and he is not alone in his thinking. At conferences I have met many siblings who think the same way Matthew does.
I have tried to explain to Matt about Brandon, but he doesn’t want any part of it. I know if he could understand what Brandon’s limitations are and then accept his brother just as he is he would no longer feel upset or frustrated by him. However, I know that is a tall order for many people. It may happen over time or it may never happen. I approach this subject whenever the opportunity arises. I hope and pray that Matthew changes his thinking before I die. It would make things much easier and much better between the two of them.
Jenn: What is the plan for Brandon if/when you die before he does?
Amalia: This is a tough question for me to address, because I am the only one who understands Brandon and accepts him for exactly who he is. That has forced me to write a workbook about what to do when we (the parents) are no longer here. I hope to have it available within a year from now. It is a much-needed book, because there are so many adults with autism and special needs. Our adult children must have a voice once we are no longer here, and I hope this book will help to supply that.
Jenn: What is Brandon's self esteem like now that he's lived on his own for a while and gone through a few jobs?
Amalia: After twelve years of living on his own and experiencing these wonderful alternative treatments *(B.E.S.T.) Brandon feels better about himself most of the time. I am his number one fan and continue to support him by focusing my attention on all his accomplishments no matter how big or small they are. I no longer focus on what he can’t do.
As far as work goes he has worked in retail and has liked it. However, after he has had a seizure at work he can longer return. He can’t take it when the other employees tease him. The stigma still exists. There are people who believe that if you have epilepsy you are possessed by the devil or demons.
Jenn: What was his self esteem like while he was in school? Did it improve after he learned of the seizure disorder?
Amalia: No, he still lacked self-esteem. The words that came out of Brandon’s mouth were often mixed up and he would repeat himself over and over again. The kids hated him and he was frequently beat up, bullied, teased and tormented. Finally, at age fifteen we found a safe school for Brandon. It didn’t take much to get Brandon down, but it took forever to get him back up.
Jenn: What event(s) or feelings(s) made you decide to write the book?
Amalia: I initially wrote this book to help me work through my unwanted feelings of sadness, anger, and disappointment. Writing was a great way to release my negative thoughts and feelings. It took nearly twelve years to write this book, because Brandon and I had to grow into the story and begin to live it. Once Brandon had twelve years of living independently under his belt I felt we had a story of great value and worth sharing.
Jenn: What was the relationship between Brandon and his father like? You mention some [in the book], but did they spend time alone together much? If so, what did they do?
Amalia: Yes, Brandon’s dad would take both Brandon and Matt out to do chores, lunch, the park, and other activities. However, every time they would return home he would be yelling at Brandon out of frustration. He loved Brandon, but living in denial about having a son with disabilities was extremely frustrating not only for Brandon’s dad, but the entire family.
Jenn: What kind of work did you do to support yourself after your divorce?
Amalia: For the first several months I would lie in my bed and cry. That was my first job to heal myself from the inside out. Although I initiated the divorce it wasn’t what I really wanted. My husband’s denial about Brandon and his lack of support chipped away at our relationship until there was nothing left.
To keep me afloat financially my friends supplied me with whatever jobs they could. They consisted of carpooling, working in a health food store, and survey work. I even helped to paint a house inside and out and did interior decorating. I also had my real-estate license, but at that particular time the real estate market was all but dead. A year later, I found a full-time job. I worked for a psychologist for three years. Then I worked for an alchemist for four years. It was a very odd job, but it paid the bills. After the alchemist died I started my own business making Angel Wishing Stations, and other craft like items as well as bath salts and skincare. The alchemist left me the formulas for the salts and skincare in his will, which I currently sale . Fifteen years ago, I also started another company selling jewelry made by my friends, which has turned out to be a wonderful business.
Today, I am living my dream. I provide presentations, workshops, seminars, and write books pertaining to children and adults with autism as well as special needs. This is the arena I love. It feels good to help others, and I feel good doing it.
Jenn: How much did the divorce impact Brandon (outside of not talking to you for a period of time)?
Amalia: I really don’t know, because he was unable to express himself. What I do know is that he and I were very happy to reunite with one another.
Jenn: Did he enjoy his experience in NY at school? Or was it just another thing to get through for him?
Amalia: He never wanted to go away to school, but his new stepmother insisted. She didn’t understand Brandon and wanted him to move out of the family home. Once in New York, he was lonely and to make matters worse he had roommates that hated him. He was treated poorly by many of the students. He couldn’t wait to return to Los Angeles.
Jenn: How was he affected by your mother's sudden illness and death?
Amalia: We went out to dinner one evening and after eating dinner she felt sick. She thought she had food poisoning and ended up in the hospital. She died a week later. They never knew what killed her.
Her death was only nine months after Brandon’s dad died, and around the same time Brandon’s dog, Archie also died. It was especially tough for Brandon, because he couldn’t talk about it. To this day, fourteen years later Brandon keeps photographs on his shelf center stage, of his dad, grandmother and dog. I believe these photographs bring him great comfort. It wasn’t until Father’s Day of this year when he was able to express how bad he felt about not having his dad around. It was very touching. He actually had tears in his eyes, something I rarely see.
Jenn: What is your relationship like with Brandon now that you are both living independently?
Amalia: Today, Brandon and I are good friends. That makes me so happy. He has come to trust me. If I have something to say I say it in a kind way. I am careful to choose my battles. If he is not hurting anyone and he is not getting hurt I stay out of it completely. Sometimes I offer tips or suggestions if I think it can make his life better, but I never insist.
Brandon is an adult and deserves to be treated with respect. I find many ways to compliment him. He really likes that. You can see his eyes sparkle when I praise him.
He is now able to talk openly to me and I am the only one he feels comfortable enough to talk to like this. He knows that I will never turn on him or attack him. He feels safe with me. He has come a long way, and I have too. I love the relationship we have today it is something I never expected to have. We have both grown up over the years. Brandon continues to be my finest teacher.
Amalia Starr is a motivational speaker and family consultant who specializes in supporting parents of children with autism and special needs through workshops, seminars, and private sessions. Utilizing a background in sales and marketing, she was the host of a cable show dedicated to parents who had children with special needs. Her results-based approach focuses on empowering both parents and their children to reach their full potential.
As a mother, she has devoted more than thirty-six years developing the skills to empower her son, Brandon. He has been living on his own successfully, enjoying his independence, for more than twelve years.
Follow Amalia Starr at http://twitter.com/autismmomexpert
www.AmaliaStarrSpeakerAutism.com
To book Amalia as a speaker, call 800-939-1046
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