January 11, 2018

Noni’s Perfect Plan

Andrew (9 years), Nicholas (10 years), and Noni

When Andrew was 2 years old, Noni noticed a change in his speech development compared to her first child’s behaviors.  He stopped making the sounds and babbles (saying ba-ba-ba or ma-ma-ma) to begin making words.

Andrew’s pediatrician sent them to a specialist who diagnosed him to be on the autism spectrum disorder.  Diagnosed at age 3, she remembers feeling very confused, quite scared, nervous and concerned for her son. Noni enrolled Andrew in Jabber Gym which provided speech therapy and occupational therapy for Andrew. 

Noni was paying for speech therapy and occupational therapy services. No one had mentioned to her that these services would be covered by the Alta California Regional Center. The services were becoming a financial burden when her Alta California Regional Coordinator called her.   The first step the Alta Regional Coordinator did was arrange a home visit. A report was completed and Alta Regional began paying for Andrew’s sessions at Jabber Gym. 

Noni says, “It would have been very helpful in the beginning of diagnosis if someone would have stepped in, shared the available resources and explained the degrees of severity as a result of autism.”

There are various degrees of severity with a diagnosis of autism.  It can show itself in a number of ways in an individual. Don’t make assumptions.   “People with developmental disabilities can think for themselves.”  She wanted to know what other parents were going through.

When Andrew was about 3 and a half, Noni found out that Andrew could attend a preschool at the local elementary school for child with special needs. Noni had been fearful that Andrew would not be able to attend a preschool. Noni found out about Advance Kids which provided an opportunity for Andrew to attend preschool. She attended an extensive Applied Behavior Analysis training program, prior to enrolling in Advance Kids. The ABA training program parents to learn how to react and interact with their children with autism.

One very important component in Andrew’s speech development, while he participated in the Advance Kids program, was the use of the Picture Exchange Communication System (PECS). This gave her hope because she now knew that she could get him into a preschool and help Andrew eventually enter a regular grade school.  

Andrew working one-on-one with Sac State intern

As Andrew came to transitioning from pre-school to regular elementary school, Noni began to aggressively research other programs to help Andrew and found out programs were few.  After aging out of Advance Kids, there was no consistent programming. 

Noni did find the UCP Autism Center for Excellence (ACE) for children with autism that talked about Applied Behavior Analysis therapy[1].   She found out about ACE from an Alta Regional email and the one thing that stuck out to her was emphasis on socialization skills so she knew he needed to be in that program.

Andrew is a very active, bubbly boy. She saw Andrew running around the playground having fun, but he was alone.  She remembered asking him how many friends he had. Andrew stated, “I have 24 friends (all his classmates)”. 

The result of Andrew’s involvement with learning socialization skills at ACE a year later, is now when Noni asks who his friends are Andrew says, “Nicholas is my first best friend and Braden is my second best friend.”  He is still very quiet and needs work on his social skills but he has made great progress.

One concern she had was Andrew being put with smaller children and reverting back to crying and being nonverbal so she preferred him in the older age group of children in ACE.

“ACE is one of the best programs available for this age group”. I wish more parents could find out about ACE.  Noni says it’s an hour travel time to and from home, but it is worth her time to see Andrew develop his socialization skills.  She has to do what’s best for Andrew.

This year Andrew was able to attend ACE [Autism Center for Excellence] Camp.  ACE Camp is at Grizzly Creek Ranch, where kids with autism are rewarded with a fun and exciting week, away from home, learning swimming, arts and crafts, kayaking, archery, volleyball, scooter hockey, fishing, soccer and dancing.

“Although I cried like a baby seeing Andrew leave for camp – his first time spending nights away from home, this was the greatest experience for Andrew.  The coolest part was opening up the camp to siblings so Nicholas could go as well.  I am thankful for the program,” says Noni.

Andrew at play with his peers at ACE

Noni firmly believes her children are going to be successful-Nicholas will be a doctor and Andrew an engineer.  She knows it will be challenging for Andrew and that he will need more resources, however he could still be successful.  “I am guilty of being a perfectionist. But I had to let it go and find out what I could do to ensure Andrew’s success” Noni told us.  Today, he plays piano, he serves as an Altar boy at their church, his favorite subject in school is math, his second language is Russian (spoken by his father) and he writes and reads in Cyrillic (Russian writing system).

When Noni’s perfect plan fails, Noni is optimistic and spins things around for the good. “I depend on my faith, everyone has faith in something. I have the belief that its God’s will/plan.  He could be protecting me from a different outcome,” Noni says.

To parents of children with autism, Noni advises them to “reach out to your support system.  My mother is my anchor, she is the shoulder I cry on in trying times.  She tells me to keep your chin up; move forward.”

Noni says, “Do not suffer alone, speak up, and ask questions – the answers and resources out there.” There are resources available to parents such as UCP Family Respite. UCP’s Family Respite Service renews energy and reduces demands on a life that can often be overwhelming when caring for someone living with developmental disabilities. “It’s scary to feel like you are alone – you cannot risk yourself and/or your child trying to do it all by yourself,” Noni says.

Lastly, Noni wants parents to stay positive and take ‘Me time’ seriously. There must be a cut off time each day for yourself. “Downtime is very important.  The boys know that at 9:00 pm its bedtime for them and mommy-time for me.  I take that time to read a book, go on Facebook, watch a T.V. program, whatever I want to do,” Noni says.

Noni is originally from the Bay Area where she attended Chabot College and Merritt College. She holds a degree in Psychology/Human Services Management. Her interest in psychology comes from having a desire to understand why people act the way they do and to really get to the core of human behavior.

She was working as a real estate agent but unscheduled time demands were too difficult to maintain as a parent. She wanted to be home with her children. Noni manages her real estate transaction coordination business at home.  She also maintains her real estate license.  

Noni is married with two children, Nicholas, 10 years old, and Andrew who is 9 years.

[1] Applied Behavioral Analysis (ABA) Therapy is the science in which procedures derived from the principles of behavior are systematically applied to a meaningful degree and to demonstrate experimentally that the procedures employed were responsible for the improvement in behavior.

 

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