Do you have a child, no matter how old, with Autism, Asperger’s or Epilepsy? Then Amalia Starr’s book 
Beyond the usual “help” books on neurological disorders, Raising Brandon is about the emotional and spiritual journey that Amalia Starr must take in order to help her child become an independent adult.
With her now 36-year-old son diagnosed with epilepsy at an early age, she was shamed into keeping the diagnosis a secret for years while she struggled to get help for her son’s learning disabilities. Many of these disabilities are now attributed to Asperger’s Syndrome, which Brandon was diagnosed with in his early 30s.
This mother’s transformative journey has led to a healthier relationship with her son, removing many of the confusing and frustrating roadblocks that kept her from actually helping her son, who has now lived on his own and on his own terms, for 12 years.
Below is a extensive interview with Ms. Starr, whose insight on how to relate to children on the Autism Spectrum will aid parents in helping their children become independent and emotionally healthy adults.
“Acceptance Creates Love.” ~ Amalia Starr
ASAP: If you could list 3 important ways to have a better relationship with your Asperger’s or special needs child, what would those be?
Amalia Starr: “For me it’s all about acceptance. Accepting your child where he or she is, and you might not like it, and it may not be easy to do — it wasn’t easy for me. But once I did accept him for exactly for he is and who he was, it completely changed everything.
“It’s really about giving up a lot of how we’ve been taught in the past. Acceptance of anybody as anybody, is probably one of the greatest gifts. Acceptance creates love.
“Once I could accept him, respect followed. I found I was much more respectful of Brandon. Children with any disability are most often not respected by anyone. I find that people feel they can get away with it. However they can treat them, they just treat them. When you look in the mirror can you say, ‘I did the best I could for my child?’ Sometimes the answer is no. At least it was for me. I had to make amends for that.
“Did he change? He completely changed. I also had given up my high expectations. People said, ‘You are crazy!’ I say, try it! And he began to develop in ways I never expected.
“This actually happened after he had already became independent. He was able to speak up for himself in a way I had never seen before. He began to trust me. And the trust — to take a risk, so difficult for someone like Brandon. He enjoys being around me more. And so do I enjoy being around him. And by acceptance, I truly focused on what he could do. I stopped focusing on what he could not do. I focused strictly on what he could do.
“I truly listen to Brandon now. I listen to even the silence. And listening is not only through the ears, and this is so important for me. But listening is through the eyes, I can see how he can feels. Mothers especially…nobody understands our kids the way we do. Especially those that are less verbal or have difficulty communicating.”
ASAP: Of the many teen and young adults with Asperger’s that I know, many of them do not have a father who is involved with their care or they do not lend the support the primary caregiver, usually the mother, needs. Much like you describe Brandon’s father in the book. What advice do you have on this topic?
Amalia Starr: “I hear it a lot about this myself. Being that I went through it. I found it fascinating that I could watch my husband be in denial while Brandon could have a grand mal (now called a tonic-clonic seizure) at his feet. It just proves how strong denial is.
“But I have an interesting take on this. I gave a workshop for fathers with children with disability. One man stood up and said ‘you just don’t get it. When it comes to helping our kids with special needs, if we can’t fix it we aren’t interested. It makes us feel terrible!’ He was screaming this.
“He says, ‘Our mentality is to fix everything, and when we cannot, we distance ourselves or we’ll just walk away.’
“So I told him, for moms, we want to make things better. We find ways to help our children. We nurture and we continue on the path until we get the results we want. We are driven.
“I also told him that we want our children that we gave birth to, to be the best that they can be. And he was silent.
“We definitely want to help these men understand what we want when we’re asking for help for our kids, for our children who have disabilities. We must ask in a way that helps them understand. We have to say, ‘I understand that you want to fix it, but I’m not asking you to fix it. But I need your help, I need your support.’ Say exactly what you want. It’s a very important piece of the puzzle especially if we want our husbands to help. This helps them come out of denial and support us and support their children.”
Be as kind as you can to your spouse, advises Ms. Starr. “We don’t want to alienate them. We want them with us. We want their support. We (mothers) need to get hold of our emotions, to control ourselves, move toward our spouse, our husbands, wanting to connect with them, as opposed to pushing them away. When our anger is escalated that’s where we really run into difficulties. Angry words come out as opposed to ‘please help me.’ ”
ASAP: In reading your book, I see that Brandon received tremendous help from Regional Center. However, many young people with Asperger’s are rejected by Regional Center as not being disabled enough. Do you have any advice on working with Regional Center to get the help a child needs?
Amalia Starr: “I didn’t even know about regional centers until Brandon was 23. We didn’t even know it existed!” until a dean at a vocational boarding school told her about it. “If you have epilepsy, Regional Center will welcome you with open arms. We were so well-received, we were shocked. They couldn’t do enough.”
Ms. Starr does caution, however, that all Regional Centers are not created equal and “within each Regional Center all counselors are not the same. “One took a liking to Brandon which is very rare because he usually offends people. Of course, this is before severe cuts, 14 years ago. So she was terrific.
“I also learned that how to befriend people at any Regional Center meeting. Parents who are angry, frustrated — and all of these things are true and real — however, if we want to get services from some place like the Regional Center, then we need to understand how we will get the most for our child: be kind, be soft spoken, gentle, listen; then, when you get the opportunity to speak, then go for it. It’s like a dance; you have to know when to step in and step out without stepping on anyone’s toes. They are shocked when they get a parent who is balanced, centered, calm.”
ASAP: You mention how many people around you were not supportive of getting Social Security for Brandon. What benefits has Social Security provided Brandon and are there any cons to having it?
Amalia Starr: “The ability to get assistance has allowed him to become independent and to live on his own. He knows how much he’s going to get. He’s able to live his life accordingly with the funds he gets. Without that, I’m not certain how he would exist out there independently.
“Social Security is for those who are not able to help themselves; I don’t think he’s a sponger. If the seizures are under control he will get back to work. He was working for many years. He now has the financial means to live. I don’t see anything negative (about having Social Security).”
ASAP: Any final advice for parents who want to see their children become independent adults?
Amalia Starr: “We must back up, we must allow them to have space. If we don’t allow them to go, they will never grow. They are so fearful and I don’t blame them — I was that way.”
Ms. Starr says we can’t hold our kids on a “tight leash” and if we don’t let them try to live independently “they will never develop to the level that they can.
“We have to find the courage within,” she adds. “It’s really not about the kids, it’s about us. If we’re not developing, guess what, they won’t either. The healthier we are emotionally and physically, the healthier they will become. Helping them sometimes is just letting go.”
Amalia Starr offers presentations, workshops and private consultations. For more information see her Website or call 310.281.1108. You can also follow her on Twitter @AutismMomExpert
