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Autism / Independence – Do All You Can, While You Can

By Amalia Starr

It happened two years ago when suddenly and unexpectedly my 41 year-old autistic son, Brandon, passed away in his sleep.

Words can’t possibly express how I felt then and how I feel today two years later. He was my youngest son and my finest teacher. Yes, he thought differently and he did things differently. However, I chose to help him live his dream of independence even when the professionals deemed it impossible.


Amalia’s son Brandon

Since Brandon’s passing I have learned many new lessons. One of the most important lessons as a special needs parent is to, “Do all you can, while you can.” I feel I did that while Brandon was alive and in turn, it has helped me tremendously with the grieving process. A month before Brandon passed away my second book was published, I Have Autism…What’ll I Do Without you, Mom? How to Prepare for When Your Special Needs Child Outlives You. As you can tell from the title, I never saw Brandon’s death coming. I wrote this book because although Brandon was able to live on his own for 17 years, he still needed my help. Brandon not only had autism he also had intractable epilepsy, grand mal seizures. I wanted to make sure that the people who would be helping him would not stunt his growth and understand why he did what he did. He almost never said what he meant or meant what he said and that was the main reason I wrote this book.

The other reason is that I am an Autism and Special Needs Motivational Speaker and when I would go out speaking I would always hear the same two questions that kept parents up at night. “What will happen when my child becomes an adult? What will happen after my husband and I are no longer here?”

For most special needs parents we ignore the future and wait until our children are grown up, because we are too busy and far too frightened to think about letting go. We hope that one day it will magically be taken care of, but that is not going to happen. You need to have a plan.

When the time came for me to “let go” I had a plan and I did everything in my power to work with my fears and to not let them take over my life. It was the most difficult and frightening thing I have ever done. However, as the years passed by it was the most rewarding and best thing I ever did. I did it one day at a time by living in the moment. Even when the professionals and my entire family thought it was a bad idea and it would never work. I knew deep in my heart that I had to give Brandon a chance to live his dream of independence.

For most special needs parents we ignore the future and wait until our children are grown up, because we are too busy and far too frightened to think about letting go. We hope that one day it will magically be taken care of, but that is not going to happen. You need to have a plan.

We want our children to live the best life possible and that is every parent’s dream.

His first year living on his own was extremely tough for both of us. Every day Brandon had numerous hurdles to get over and countless issues to resolve but it never stopped him. I had tremendous fears that I had to learn to deal with and together somehow we got through the days. As the years passed by we began to trust and it got easier for us both.

If we can look at “letting go” as a process and not let it overwhelm us, it will become less daunting and we will become less fearful. As parents, we must be careful to not allow our own fears to stop our children from advancing. Being courageous is a necessity.

There will be a window of opportunity and you cannot afford to miss it and you will know when that is. I am hopeful that you will be able to “let go” in a timely manner and your child will find a suitable place to live and become independent while you are here and after you are gone.

Our Children Will Learn Life By Living Life

We know that our children silently demand that those close to them change and grow. I know it as a mother and I saw it with my own eyes at Brandon’s memorial. I always knew Brandon had a secret life, but I never knew the depth of it until ten days after he passed away.

In the city of Santa Monica, where Brandon lived they held a memorial in his honor. For a child who could never make a friend or be accepted for exactly who he was, that all changed when he became an adult and he did it all on his own. By living independently he found his way into people’s hearts as only our autistic children can, when given the opportunity.

img_0916_3-1Brandon lived his life his way, he lived his dream of independence and he left in peace.

No words can express the emptiness I feel in my heart, but what helps to fill it is sharing Brandon’s story and seeing autistic adults living on their own in an appropriate setting that keeps them growing like he did. It is extremely important that our children become part of society with all their wonderful gifts. Their contributions and unique vibrations will make this world a better place and that is something we will all benefit from.

You can view the news video-clip on Brandon’s uplifting story at:

There is HOPE!


Amalia Starr

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Amalia Starr is a Motivational Speaker, Author, Transition and Independent Living Coach, founder of Autism Independence Foundation, and Mother to an autistic adult son. She is the author of, “Raising Brandon: Creating a Path to Independence for Your Adult ‘Kid’ with Autism & Special Needs”. In it she describes how she led her son, Brandon to independence when the professionals deemed it impossible. Her second book is titled, “‘I Have Autism…What’ll I Do Without You, Mom?’ How to Prepare for When Your Special Needs Child Outlives You.”
Amalia offers keynotes, presentations, and conducts workshops and coaching sessions worldwide. With more than forty years of experience, she specializes in independence training for parents, teaching them how to help their special needs children reach their full potential and gain maximum independence. She has been recognized as a pioneer and trailblazer, shining a light on the path ahead helping parents prepare for whatever comes their way.
To contact Amalia for keynotes, presentations, seminars, workshops and private consultations:

This Post Has One Comment

  1. This is so beautifully written… As a person with epilepsy for over 43 years, I understand the meaning of ‘letting your children be independent’… My mother was my pillar of strength, but never stopped me from being independent and I went into the outside world at the age of 17, a year after my seizures commenced. As a person with a disability, independence has taught me so much and I will always be grateful to my mother for standing by my side. God Bless Brandon, and may he rest in peace!

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