Ryan was born a beautiful typical baby boy. There were no indications that he had autistic symptoms. As he turned 2 years old things began to change. He was not responding to his name or to external stimuli that typical children would respond to.
At that time there wasn't the amount of information available or the awareness in autism as now. We knew we had to do something. We had his hearing checked through an audiologist which came up negative. Our pediatrician initially said he would grow out of it and for us to read to him more but after repeated visits and being misdiagnosed he kept assuring us that it still wasn't autism.
We were told that we could get an assessment by the school district and that he was entitled to receive services based on the findings. After waiting months for the complete assessment and losing more time, the school district assessed him as Developmentally Delayed.
We placed him into an early childhood school program. After two years and still not seeing any progress after he was shifted from program to program, we got more and more concerned and very frustrated! The school district did not guide us towards any outside resources or interventions. He was continuously being placed in inappropriate classes and not getting the services he was entitled to.
We had him assessed by a neurologist who told us he had PDD (Pervasive Developmental Delay) but that the prognosis was good and that he will grow out of it. Being very frustrated we uncovered through the internet symptoms that seemed to match what we were observing with Ryan. The term was called Autism. We finally got a diagnosis of Autism from an expert out of state.
By this time we could see that Ryan was as frustrated as we were. He would stand in front of the refrigerator and cry because he couldn't articulate his wants and needs. We felt helpless and lost and felt like our child was being taken from us by this nightmarish disease. The early childhood program the school offered at that time was woefully inadequate.
During this period of time we found out about a behavioral intervention for children with autism called ABA (Applied Behavior Analysis). We started the program on our own with two therapists who came from New York and had experience with teaching ABA. They worked with Ryan one on one for many hours. We saw immediate results. He was learning as fast as we could teach him new skills and went from no speech to saying words within the first couple weeks of his programming. We didn't have accredited supervision but immediately saw more positive results from those early intensive one on one sessions than we had in the past two years of school programs.
We read more and more about Ryan’s rights and realized that every child in this country was entitled by law to receive FAPE which stands for a Free and Appropriate Public Education We also realized that Ryan was entitled to services from the school district under the Children with Disabilities Act.
When we asked for the school to provide ABA we ran into resistance. Ultimately we were forced to mediate and then file due process so that Ryan could get the services that his disability required. We filed due process with the school district and prevailed unanimously at the local level and then state level when the district appealed the first decision.
Ryan has had an ABA home program since he was 5 years old and is now 13 years old and currently has an ABA program with The Lovaas Center a highly accredited provider for children with autism. He is progressing very well but we feel that had he been able to get his diagnosis earlier and started his home program at an earlier age there is no telling what gains he might have made.
We wish we could tell you that Ryan was miraculously cured but unfortunately that is not the case. He will always need some type of care as he enters adulthood.
We can tell you that Ryan is now a delightful young man who loves surfing the internet, playing video games, going to movies, Disneyland, the beach, riding a bike, telling us what he would likes for dinner or what he doesn't like for dinner. He is in Junior High with other kids and does very well. We could go on and on about his skills but it wouldn't exist without his ABA program, his hard work and the loving dedicated people that work with him consistently!
We still have challenges with the school district but we will never stop advocating for him. We ask ourselves how much is a word worth? How much is being independent enough to brush your own teeth and get ready for bed like a typical child? There is no price tag that you can place on giving a child a chance to live in our world and our rules so they don't feel as much of an outcast as others make them feel. This is to all of the parents, advocates, teachers, aids, tutors, therapists, and others who touch a child’s life, Fight the good fight for our children!