Real Life Stories

 

A Mother’s Gift that Keeps on Giving: A Son Living With Autism

By Sophie Arao-Nguyen, Ph.D.
Executive Director, Family Voices, Inc. 

It has been 15 and a half years since my son LJ got diagnosed with Language Disorder, then Pervasive Developmental Disorder Not Otherwise Specified (PDD NOS), then Autism, then now Asperger's Syndrome. Back in 1993, autism was still an unknown diagnosis in most circles. I am thankful that at that time I lived in the Bay area where disability resources, advanced medical research and cutting edge technology were the norm. 

Early intervention was key to LJ's chances of living a regular life. Since LJ was of pre-school age, it was the school district's assessment center that helped us get started. The path was not easy. When the school district's solutions and LJ's interests did not match, we had to hire a lawyer to make sure LJ's chances of succeeding in the least restrictive environment would prevail. When the school district decided to settle with us, we got what we needed for LJ after which we started to team up and partner with the team composed of the case manager, principal, physical therapist, speech therapist, his teachers and his aide. My husband and I became active in school and assisted the school in getting parents together. We started a support group and parents of newly diagnosed kids were referred to our support group. I got invited to speak at teachers' training. 

Through our interaction with the Autism Research Institute in San Diego, we discovered that kids with Autism were helped by giving them a megadose of Vitamin B6 and magnesium. That was the only supplement we gave LJ. Although he was prescribed some medications by a specialist in Tourette's Syndrome, I chose not to start him on any medication. LJ was also lactose intolerant and allergic to food coloring. He would have a bloody nose each time he ingested anything with food coloring in it be it the Baby Johnson's shampoo or M & Ms or over the counter medications that had food coloring in it. To date, LJ has learned to read the ingredients in shampoos, food, etc.

The only intervention we chose to use for LJ was the use of supplements, the presence of a one-on-one aide until fifth-grade, speech therapy, a lot of love and presence in his life. We noticed that LJ's growth spurts coincided with the spring season. 

By the time LJ went to middle school, he discovered choir. The choir teacher discovered LJ had perfect pitch. He was given the opportunity to sing some solos during choir recitals. He focused on choir for five years and during the last two years of high school, he decided to try his hand in drama. He loves drama too and it allowed him to refocus his verbal tics into something more productive. 

He started voice lessons in high school and when we moved to New Mexico, we were able to find him a professional voice teacher who used to perform in Europe in her youth. 

LJ has blossomed into a young man. He turned 18 recently and will graduate from high school in May. Little did I know that when LJ was born, I was destined to focus my life work on this mission of assisting children and youth with special health care needs. What I thought was a curse was actually my blessing and salvation. For LJ is truly the sunshine of our lives and many lives. He is well loved at school by his classmates and his teachers. He has made a lot of friends. 

During Autism Awareness Month, I am thankful that much has happened in the autism world. LJ sang at AMCHPs Annual Conference and at the Family Voices gala. The face of autism shifted when people realized there is no one face of autism. It comes in different forms, size and shape as well as gifts. LJ is a gift. I will never exchange him for any other son without a disability! 

To learn more about Family Voices, Inc. visit here.