What Brandon and Amalia teach us about love, honesty and parenting a special needs child

Brandon

“The way we look at our children and their limitations is precisely the way they will feel about themselves. We set the examples, and they learn by taking our cue from us.” Amalia Starr

By Debra Muzikar

Five years ago before the first Art of Autism book, before this website even existed, I was contacted by Amalia Starr for art work for the cover of her new book Raising Brandon. She heard of my son Kevin’s art work and was encouraged by Keri Bowers to put art by an autistic artist on the front cover.

“I want an image of a path,” she said. Her book is subtiled Creating a Path for Independence for your Adult “Kid” with Autism & Special Needs. She paid Kevin a stipend for his contribution and she sent us a complimentary autographed copy of the book.

RaisingBrandonbookcover
This week I was shocked and saddened to hear of Brandon’s passing. Brandon was only 41 years old. He died in his sleep on November 24.

Today thinking of Brandon’s memorial tomorrow and the pain a mom feels when she loses a child, I picked up Amalia’s book and reread it. Raising Brandon is as much about Amalia’s growth as a person as it is about parenting a child with special needs. Her book is relevant to Kevin and my story, and to all of us parents who have children who don’t fit in.

At the advice of doctors, Amalia spent many years keeping Brandon’s diagnosis of epilepsy a secret, not only from others but from Brandon himself. There was a stigma attached to epilepsy. He wasn’t diagnosed on the autism spectrum until he was 32. Amalia writes about the years spent trying to change Brandon into a normal child. When she finally surrendered, she realized that it wasn’t Brandon who needed changing – “it was my perspective that needed shifting. I had to forgive myself for trying to make Brandon someone he wasn’t, and work on accepting him just as he was.” She advises parents not to keep secrets about their child’s diagnosis.

When Brandon was in public school she volunteered in his classroom. The children were brutal, teasing and hitting Brandon, even in her presence. The school administrators did nothing. The chapter about his mistreatment is hard to read. He was locked in a dark shed in 105 degree heat. His shoes and socks taken away from him. He was found in a fetal position crying. On another occasion his basketball teammates purposefully broke his nose. This did not dissuade Brandon from pursuing his dream to play basketball. He stayed on the team never scoring more than four points a game.

When he is in his twenties, Amalia chides him for bad table manners. She sees the hurt in his eyes and realizes she is wrong to treat him like a child. She comes to the realization Brandon “doesn’t have the verbal skills or the courage to directly confront someone when he is wounded, which allows others ‘to get away’ with harassing him.” She realizes that it’s “kinder to accept and value a person as he or she is, rather than someone who is continually falling short of my expectations… We all benefit when we have the capacity to see our children for who they are, not for what we need or want them to be.”

I think about my own son Kevin and his challenges this last couple of years. Kevin has the same issues as Brandon. He is deeply hurt by others’ actions yet doesn’t have the skills to communicate his hurt in healthy ways. He’s learning those skills. He like Brandon finds it easy to forgive his parents when we make mistakes. As Amalia observes “we may talk a lot about our children’s limitations, but we parents have our own personality problems and unhealthy behaviors to contend with.”

Amalia learned to make a “conscious effort to talk to Brandon like an adult, and treat him with kindness and respect.” She also writes about how important it is to be kind to herself.

Over the years Brandon came to terms with his epilepsy. He became an advocate and speaker. As Amalia writes, he “moved from being a victim to a person with courage and purpose.” He learned the importance of giving of himself to help others.

On Brandon’s 36th birthday, he only had one wish. “I wish people could learn to accept me like I am like you do Mom, but in their own way.”

Brandon

Tomorrow, December 7, there will be a “Remembering Brandon” Public Memorial Tribute on the Santa Monica Third Street Promenade in honor of Brandon Cramer. Brandon was a resident and promenade volunteer. He loved the Promenade and befriended merchants and ran errands for many of the popular venue’s shop owners, cart owners, and street performers. Brandon befriended many of the area’s police officers and firefighters as well. Brandon’s memorial tribute gathering will take place from 10 am until 11 am at 1351 Third Street Promenade, Santa Monica. Amalia Starr will be speaking.

I will not be able to make that tribute. My heart is with Amalia at this very sad time in her life. Kevin is moving to a group home in 10 days. At his IPP with the Regional Center yesterday, he said “I want to learn to live independently.” Amalia has created a prescription for this to happen for Kevin and for many others. I highly recommend her book.

Towards the end of the book Amalia shares this profound quote from Eckhart Tolle from Practicing the Power of Now.

“WHEN YOU ARE ILL OR DISABLED, do not feel you have failed in some way, do not feel guilty. Do not blame life for treating you unfairly, but do not blame yourself either. All that is resistance.

If you have a major illness, use it for enlightenment. Anything ‘bad’ that happens in your life – use it for enlightenment.

Withdraw time from the illness. Do not give it any past or future. Let it force you into intense present-moment awareness-and see what happens.

Become an alchemist. Transmute base metal into gold, suffering into consciousness, disaster into enlightenment.”

I ask those who read this blog keep Amalia and her family in their thoughts and prayers. A child’s death before our own is painful and lonely. For more about Brandon and the lives he influenced read this article.

Postcript: Amalia has informed me her new book was released one month before Brandon passed. It is titled “I have Autism … What’ll I Do Without You, Mom. How to Prepare for When Your Special Needs Child Outlives You” . . .

Leave a Reply

Your email address will not be published. Required fields are marked *