Isaac has autism

This is an account of my two year old austistic son's progress in an Applied Behavior Analysis (ABA) program and our struggles with both fighting the San Juan Unified School District for funding and seeking outside funding to continue his program. Also what it is like to living with autism

Location: Sacramento, California

Most of my life is about my children right now. My daughter is one and a half and my son will be three in November. He is autistic and most of my day revolves around him and his therapy.

Tuesday, October 26, 2004

October 25, 2004

This will be posted as the 26th but just thought I would talk a little about Isaacs progress daily. For about a month we have work with Isaac to say "Hi" when people enter and "Bye" when they leave. You usually have to say it to him first, unless he doesn't want to do something and then "Bye" comes quite easy. However, he will now reply. So, about a week ago, I asked that we go to the next step as in when someone says "Hi, Isaac" he replies "Hi" and then says the name of that person. We have had to prompt the names. But today, Mike, his favorite therapist, gave the greeting and Isaac responded "Hi, Mike." This sort of progress might seem if you are only used to dealing with typical children, but for Isaac who less then three months ago wasn't even differentiating between people, it is huge.

Monday, October 25, 2004

What is ABA?

Here is a fairly good link on what ABA is I will try to add some others later.

Sunday, October 24, 2004

General Background Information

This is very general and I have left out, for the most part, the emotional roller coaster that has accompanied living with Isaac's autism. I will go into that in a later entry. For now, here are the important events leading up to the present.
Isaac was diagnosed with autism on December 31, 2003, a month after his 2nd birthday. By the time he received the actual diagnosis we were already expecting it. We had already called ALTA Regional Center, which is the state of California's resource center for children with special needs. They evaluated him shortly after and allotted him funding for an hour of speech and an hour of OT a week. They also approved him for funding for an ABA (Applied Behavior Analysis) program which we had, thankfully, been told by Dr Linda Copeland, the developmental specialist who diagnosed him, to request. I was given a list of vendors from which to choose. I had no idea that I would be the one who had to chose. With both the Speech and Occupational Therapist, ALTA just assigned one. Being a bit overwhelmed by everything I hadn't even questioned if I had a choice in those therapist (which it turns out I do).
So I began the long haul of researching the ten different choices. I was anxious to get Isaac started, but then again, ABA, I believed (and now know), was my son's best chance at recovery and these people were going to be in our home up to 40 hours a week. I wanted to make sure we got the right agency.
After much research, (online, on the phone and in person) and waiting for openings, I chose FACES (Foundation for Autistic Childhood Education and Support). Along the way in choosing I learned a great deal about ABA. I also began to learn that the school district we live in, the one we had moved to because the schools were so highly rated, would most likely not want to fund the program once Isaac no longer qualified for full funding from the state regional center. This would be the date of his third birthday. I don't know why the state transfers responsibility to the school two years before a child is school age, but that is how it is, at least here in California.
After being evaluated by FACES, both to make sure that he fit the parameters of a child that would benefit from this therapy and to assess his baseline skills (those he had before he started the program), we met with ALTA for our first Planned Team Meeting (PTM). Isaac was awarded 20 hours a week, (which was later raised to 40).
He began therapy on March 31, 2004. His progress has been amazing. He has gone from not being able to imitate anything, speech or actions, to being able to imitate just about anything nonverbal and a good deal of verbal. He has gone from virtually not talking to saying close to 30 words well and really trying to say a great deal of others. He also has a receptive vocabulary (meaning words he understands) of over 100. He has gone from hardly noticing anyone around him to making eye contact about 50 percent of the time, trying to engage the adults around him in play and really starting to differentiate between individuals.
Needless to say, we are hoping to continue his current program. His third birthday is fast approaching. He is scheduled for assessment by the school district on October 27 and then by ALTA the next day to see if he is still eligible for their funding (ALTA still pays a percentage as long as he is meets their criteria). After that an IEP (Individualized Education Plan) meeting will be scheduled. At that time the school will make their recommendations for placement. We are hoping they will go along with what we want, but are not expecting it. We have contacted an advocate and hope to secure his services for the first IEP. The advocate is expensive but is no where near the price of an ABA program. Wish we had better idea of what to expect. Its the unknown that makes the world a frightening place isn't it.