As the signs of autism became more evident to me and my husband, we began to seek intervention. I called our local agency that handles special needs’ kids from 0-3 and said I needed my son evaluated. I told them, “I think he shows signs of autism.” An appointment was made and I took my son in for an evaluation. This evaluation determined that he had mild retardation and/or pervasive developmental disorder. (To this day PDD seems a vague and suspicious term). I remember Marcus receiving services and being evaluated again at a school site. It was actually the school district psychologist that officially gave Marcus the diagnosis of autism. With the school and the local agency’s diagnosis, we were able to put him in a special needs class at two-and-a-half. And so his “early-intervention” began.
Those are some facts from my now fuzzy memory of that time. Now here are some emotions. I felt punished. My older son, only 2 years older than Marcus had delays as well. However, he was doing quite well. At three years old, he was in an excellent communicatively handicapped class in Oakland. The teacher was dedicated and skilled at teaching the kids in her class to talk. Every minute of every day was spent on language acquisition. My older son’s success convinced me that intervention was all that was needed since he began to speak, play appropriately and was beginning to show signs of being well-adjusted. I felt hopeful, triumphant and proud. Then came Marcus. Why did I have a son who I could not make whole? This was my question. My answer was that I was being punished by God. I thought of every sin I had ever committed and asked for forgiveness in hopes my son would talk to me, play with his siblings, go to bathroom on his own and do everything else that is on the list of what is deemed “normal”. I felt guilt. After all, I was his mother, I must have done something to prevent his healing.
The times when guilt reared up and taunted me the most was at the IEP meetings, the meetings where the “team” – myself, and everyone else involved in Marcus’ education comes together to hash out a plan for his success in the classroom. What those meetings were for me was a time for the team, myself excluded, to reveal as little about available services as they could, and to prove that they were the experts, not me, about my son’s behaviors and educational needs. I wish my next line was, “I was confident, informed, and the best advocate ever for my son,” but that is not true. What is true, is that I felt guilty as charged about my son’s condition (I, the accuser) and I acted accordingly for too long. It took many IEP meetings for me to stand firm for what I believed Marcus needed and to demand services that were within my parental rights to have. This meant accepting the possibility that I might have to take the district to hearing if necessary. I am fine with that idea now, but I was not 10 years ago. One belief and truth is that Marcus has needed a one-on-one aide since he started school – primarily because his attention span is so short, and his activity level is very high. From the start of his education, school districts have denied Marcus that service. It took till he was 11 years old for that service finally to be granted.
Then there were comments. In one IEP meeting, an occupational therapist, who was denying Marcus services throughout the meeting commented that the services she provided didn’t work and she didn’t have any more available so therefore she wasn’t going to be working with Marcus anymore. She went on to say at least four times in a row “the parent has to carry through at home with what the teacher is doing at school or the IEP goals are pointless.” Her point was true. The fact that she said it that many times crushed me. Incompetent, irresponsible, uncaring and lazy is what I heard four times. That comment echoed in my head many days after that meeting. My guess is that the therapist probably didn’t even remember the details of the meeting after her work day was done. By the way, the subject was potty training – one of the most difficult challenges I faced with Marcus.
Well, I feel I should stop for now. I don’t want to write too much for one blog. I will continue on my emotions about Marcus in my next blog about Autism, Marcus, Me. Ciao!