Meet John

Home: Campbell, California
Age: 3
Diagnosis: Autism
Favorites: Letters, shapes, colors, books, watching Pooh Bear videos, playing outside with his little sister and dog, The Jungle indoor play center and the train set at Barnes and Noble

John was diagnosed with autism when he was two years and seven months old. At the time, he had about fifty word approximations, severe behavioral problems and was isolated in a world of self-stimulation and self-injury. He also had night terrors three to four times per week, which kept me up a lot. Sleepless nights were extraordinarily difficult because I was pregnant with my daughter, Alyssa, and my husband could not help me at since he was recovering from a traumatic brain injury. He was in a motorcycle accident when I was seven months pregnant with our daughter. Since John’s diagnosis, our lives and our family have changed forever. Our experience is not unique and we now know that we are not alone in our sorrow and grief over the loss of a typically developing child.

The process of dealing with the initial shock and horror of the diagnosis was hard, but getting appropriate services and education interventions was even harder. It is not easy having a child with autism but at the same time, John is an amazing little human being. He is such a happy little person when he is not frustrated and has a great sense of humor. It is safe to say that life is an adventure with John in our world—never dull and always interesting!

We were lucky to have the guidance of other parents regarding what to do and where to go to get help for John. I was operating on automatic pilot—not grieving or feeling—just reading, researching, calling service providers and autism experts in desperation to put a service plan in place to deal with the severe speech delays, self-injurious behavior, screaming, kicking, hitting and hair pulling tantrums that seemed to go on for hours. We weren’t as concerned about his social issues and interesting relationship with inanimate objects. Playing appropriately with toys and children his age was the least of our worries.

I didn’t know what I was talking about for months, but I was convincing and relentless. I made sure that our regional center wrote specific objectives like a behavioral and sensory integration assessment into his family service plan to address his special needs beyond play, social and language deficits. Many regional centers will offer a special day class or preschool program a few hours a week, but this is not an adequate intervention plan for most children with autism .

Our regional center provides John with twenty hours a week of an in-home Applied Behavioral Approach (ABA) program. He also has occupational therapy twice a week and my husband and I trade off taking him to a parent participation preschool in San Jose twice a week for a total of five hours per week—all part of an Individual Family Service Plan (IFSP). He already had 1:1 speech therapy privately because he was diagnosed earlier that year with a rare neurological speech and oral motor dysfunction called Apraxia. Actually, that is how I discovered John was autistic. I was researching apraxia-kids.org and realized that Apraxia generally occurs with Downs Syndrome, cerebral palsy, or autism. When I saw the word autism, I just knew.

We have an amazing team of service providers and we have created an integrated home program that covers all of John’s developmental needs. I am a FIRM believer of Applied Behavior Analysis, but the provider of these highly specialized and intensive one-on-one services must be carefully scrutinized by parents as all providers are NOT CREATED EQUAL. I am very passionate about early, effective, appropriate educational interventions and it is my mission to hold our school district and regional center accountable regardless of the budget crisis.

John is doing quite well now. His behavioral home program has been in place for a year and he has come so far in that year! There are nineteen other typically developing children at the preschool he attends. John does not initiate play or contact with the children, but he does parallel play and will ask for help instead of screaming. He spontaneously describes objects in the environment and occasionally will even stop and observe other children interacting. The mainstream environment with support of a teacher from his in-home program enabled these huge breakthroughs. Six months ago, the sight of children his age resulted in screaming, crying out "all-done, all-done" and head banging.

John has about 230 words now and he uses three- and four-word phrases most of the time. He plays much more appropriately, tantrums less as well as hits us and himself A LOT less frequently, which is awesome. We are also really working on the concepts of play and socialization right now. We take John out in the community several times a week to engage in age-appropriate activities like music, gym, art classes, story time at the local bookstore, and trips to the library and grocery store. We are also addressing a gluten/casein free diet and working on other biomedical interventions.

The other day, John said to me "What is this, Mommy?" That was the first time in my life that I have ever heard him ask me a “wh” question—something typical three-year olds ask all day long. We were sitting on his bed and I said, "That is a hanger, Johnny." and he threw it across the room and said, "Bye-bye hanger." I laughed so hard and then just cried!

Today, I have hope. This time last year I had none. My heart goes out to the parents that are new to the world of autism. In the beginning, there is so much to learn, so much to do and so much to worry about. There are many roads to take and many destinations along the way. Early intervention is the key and making sure that your child receives a comprehensive service plan that deals with all of your child’s symptoms and understanding what motivates your child to learn is extremely important. Children with autism can learn to do many things—my John-John is proof of that!

Good Luck!