What are some of the things you noticed in Quon that prompted you to have him screened?
One day I noticed fluid leaking from his ear and rushed him to the hospital. I was in shock. He didn’t have a fever or any other signs that he wasn’t feeling well. They kept him there for a week while they administered heavy doses of antibiotics to fight the infection. He was never the same after that.
Quon became a different child. It was like they switched him with someone else. He wouldn’t speak, respond to his name or play with his toys. I thought he had lost some of her hearing from the ear infection so I took him to have his hearing checked. All the tests came back negative. His hearing was fine. We went to Children’s Hospital for a full exam. I needed to know how to get my little boy back.
How old was Quon when he was diagnosed? What was your response to his diagnosis?
He didn’t receive his autism diagnosis until much later in life. He must have been 8 or 9. It was relief then more frustration. I finally had a name but there really wasn’t much information on autism back then. I still had to rely on my own intuition to be the best mother I could be.
What were some of the programs and support that you used to help him grow and develop? How did you handle being his advocate?
I called myself the unlikely advocate. Interventions and supports were expensive and considered alternative. Health insurance didn’t cover ABA (Applied Behavior Analysis). Those therapies were more than what I made working. The only programs were provided by the school. They dumped him in a special ed class where he received speech therapy a few hours a week. Then they pulled all the students out of their confined classrooms and placed them in regular classrooms with aides. He wasn’t learning anything and came home with homework he couldn’t complete independently.
I was constantly in his school fighting for his educational rights. I ended up pulling him out of school and homeschooling him for half a school year. The following year they made some changes and invited us to come back. This was better but not perfect. I eventually became Vice President of the PTA to help other families who had students with special needs.
What was the biggest obstacle you’ve overcome in Quon’s life?
My biggest obstacle wasn’t autism itself but the impact autism had on my life. I was a terrible employee. I was unreliable. I was showing up late, leaving early and unable to come in at all because of something that was going on with my son. There was always somewhere I needed to be because of an appointment, meeting or because he wasn’t feeling well.
I was let go more times than I would like to admit. I also don’t have a college degree so I was limited with the type of jobs I qualified for. I’ve been self-employed for the last 6 years. It hasn’t been easy but I need to have control over my finances and my schedule.
How did you manage parenting your daughter while still providing additional support for Quon?
Parenting wasn’t always easy. I had to throw out everything I ever learned and come up with a way that he could understand. I also had a daughter 6 years younger than Quon and she had her own way she needed to be parented. On top of all that, I was diagnosed with Fibromyalgia and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
We had our own way to relate to each other as a family. I spent time with them together and apart to make sure they got the love and support they needed.
What is your favorite part about being Quon’s mom?
Quon has the happy walk and this crooked little smile that I see when life is good in his world. It doesn’t take much to make him happy. All he needs is food (Burger King please), access to the internet and for us to leave him be. Looking up and seeing that smile on his face means EVERYTHING to me. The best part about being his mom is…being his mom.