Vanessa Bieker's son, John, is on the autism spectrum and along the transition to adulthood, he met many challenges — from unemployment to lack of social engagement. Through the Fly Brave Foundation, Vanessa is creating the opportunities and resources that the autism community needs and deserves.
Tell us about yourself and your son John.
People in our circle refer to us as "The Dynamic Duo." John is the dynamic and I’m the other half to make a duo. I am 42. I don’t have any credentials after my name and I am not an expert on autism. I am just an autism mom who believes in the power of faith, hope, and love. I am my son’s advocate and as long as I’m upright, I will remain his advocate and raise awareness. I view the world as a mission field and teach my children to be kind, hardworking, and humble.
My dynamic son John a.k.a. John John turned 22 in May of this year, graduated, and officially aged out of the school system. His spirit is infectious. He is non-verbal but can be heard at 140 decibels with a flash of his smile. He runs a 5 minute mile and has a wall of Special Olympics gold medals to prove it. He loves God and Mickey Mouse. Music is his lifeline. He has sensory issues so you won’t find him without his earbuds. He doesn’t watch TV but loves going to the movies. He finds happiness in any task he’s given and has found a niche in jewelry making; his jewelry line is on Etsy/FlyBrave. He enjoys the company of others yet has difficulty initiating social engagement. However, if you engage him, he will join in by taking out one earbud and smiling intently. John is intuitive and feels his way through life with that intuition. We call it God’s great grace.
What was the journey of your son's autism diagnosis? Is there anything you know now that you wish you knew then?
At 18 months old he began to regress and lost his language, eye contact and social inhibitions. His pediatrician, Dr. Vernon Walton, was instrumental in obtaining a diagnosis. The year was 1996. I was 22. Social media and other electronic avenues weren’t readily available like they are today. He would melt down at the grocery store and society deemed him a poorly behaved child and I, a young mother who lacked discipline. We were referred to a Speech and Hearing Specialist, and the test results were normal. I thought, “Ok, he can hear, so why doesn’t he respond to his name or other social prompts?” A couple of months later, his doctor called and told me that his grandson, who was John’s age, started experiencing the same symptoms, and was diagnosed with autism. He set up a screening for us at Alta California Regional Center to have John tested. The results concluded that John had autism. After the shock set in, I pulled myself together and sprang into action. I attended conferences and seminars; read books; went to specialized classes to learn how to parent a child with autism; and enrolled him in Speech, OT, and ABA therapies.
The best advice I received after the diagnosis was from a therapist who encouraged me to immerse John in the world. She told me to continue to take him everywhere, no matter how difficult. She reiterated time and time again, “Don’t leave him with a sitter while you run errands and most definitely take him on outdoor adventures every chance you can, even if it’s just a walk around the park because these experiences will shape his future.” I followed her advice and it changed our lives for the better. I felt the world was so overwhelming for him and I was hurting him by forcing him to run around with me. In reality, the world was overwhelming. Autism had just onset and he was learning to navigate through it at not even 2 years old. He had no life experience to find comfort in. He needed to constantly experience the world to learn coping mechanisms. I can honestly say this was the hardest part of the journey. I could write a book on the most embarrassing moments of my life but we preserved and here we are today, 20 years later, celebrating every milestone and taking nothing for granted. We survived the early years and although puberty was the hardest part of this journey to date, we survived that too. Today we’ve entered adulthood with a history of accomplishments behind us to keep us strong going into this next phase of life.
how has your faith shaped your family, especially while raising a child on the autism spectrum?
My faith has been tested and strengthened and this journey would be impossible without God. I believe God chose me to be John’s mother and although life has been hard and difficult, he’s never left my side. I can’t recall a time that he didn’t provided the resources I needed to get through the storms. Doors have closed and prayers have been answered at the 11th hour but he’s always made a way for us. It’s taken me decades to fully understand Psalms 46:10, “Be still and know.” In reflection, all of the broken pieces on my journey have formed a beautiful masterpiece that I call life.
What is the Fly Brave Foundation and how did it come to be?
The Fly Brave Foundation is a grassroots, California non-profit, that I started after seeing the need for employment services in our community for young adults with autism once they have aged out of the school system. While in school, a workability program allowed John and others like him to work at the Goodwill on Tuesdays and Thursdays. He loved it. It gave him purpose and independence and he was proud of his $62 bi-weekly paycheck. This past May, he officially aged out of school and therefore lost his job, as it was funded through the school district and another student was in line to take his place. The transition was and is still hard on him. For this reason, I started Fly Brave. Our mission is to open a work based program that gives young adults a sense of purpose, independence, self-awareness and the opportunity to try different skillsets in finding which one appeals to them. We are fundraising and holding community events to share our vision in hopes to get a space and bring our vision to fruition. You can read more about our mission/vision on our website at www.flybrave.org.
It's fantastic how Fly Brave hosts events for teens and adults on the autism spectrum, like prom night and even a fashion show coming this November. What makes these programs meaningful to your son and the autism community?
My son had never attended prom and yet I remember mine like it was yesterday. It’s a memory I wanted him and our autism community to have. It was our first event and an army of volunteers helped to make magic happen that night. A few prom stars showed up in limos. Bare Minerals reached out and donated make up appointments for the ladies. The night was full of energy. We offered karaoke and the kids sang their hearts out, danced their hearts out, feasted on a gourmet nacho bar and desserts, took pictures in a giant photo booth and were free to just be themselves. You can view the night’s photos on our website. We are already working on venues for next year.
Our next major event is a Fashion Show in November. All of our models will have special needs and many will be our prom stars. My son would not have attended a prom and may not have the opportunity to walk in a fashion show so these are the types of empowering functions I want to put on in an accepting environment powered by love for individuals with special needs. I want to show the world that they are more than autism and raise awareness on their abilities and give them an opportunity to shine in the spotlight like they did on Prom Night.
What advice would you have for other parents who are asking themselves, "What do we do when our child ages out of school at 22 years of age?"
This is the million dollar question and the most important one we can ask ourselves. Like most parents, I knew this day would come yet it came faster than I anticipated. I think it’s important to find out what our children’s strengths and interests are and focus on opportunities that will foster those when they enter adulthood. For example, my son loves to stock things, put things away and finds joy in folding laundry. Working for the Goodwill or similar business is a good fit for his interests. It’s taken years of exposing him to new experiences to figure out his likes and dislikes. Being non-verbal with limited communication, he doesn’t verbalize, “Hey Ma, I love running, I dislike soccer, I love to fold clothes, I dislike vacuuming.” It’s not that simple for us. Our journey is trial and error and paying close attention to his non-verbal communication (body language).
I guess my advice to parents starts with this. Hold on to hope. Your child is entering adulthood and you have watched them move many mountains and overcome boundaries that some may have said they wouldn’t. You have survived enough ups and downs to know you’re going to make it through this transition too. Your child is going to continue to break barriers. Don’t view this as the end, but rather a new beginning. Stay strong. I am in this with you. I am living it today.
Contact local businesses and inquire on volunteer and employment opportunities for your child. Be pro-active with your child’s Transition Plan and during IEPs, collect as much information as you can about what programs are available in your community. Tour the programs that foster what your child’s interests are and use the IEPs to document how your child will transition into these programs upon aging out. Trust me, I know there needs to be more resources and employment opportunities available. Recent statistics report that in the next decade, 500,000 adults with autism will enter adulthood and nearly 80% of young adults with autism are unemployed. We all want purpose. We want it for ourselves and especially for our children. We were born to do more than just exist. Advocating for our children doesn’t end when they turn 22. Keep fighting the good fight.