I have a horrible habit f wakin gup about one in the morning with the realization that no one is going to help Joey. The school personnel couldn't care less- in fact, they seem to be actively trying to deny Joey services that everyone else says he needs. I hired some private therapists, but they seem more interested in their paperwork than in tailoring a program from Joey's training and education. I am not a trained speech or occupational therapist or special educator.
When I was in India, I had an IndRail pass. There was extensive flooding in an area I was scheduled to visit. I went to the train office to change my reservation, and the people there told me incedulously that since I had an IndRail pass, I could get on and off the train at will, what was I bothering them for? Just tell the conductor I wanted to stay on the train, no problem. They refused to change my reservation. When I did as I had benn told and mentioned to the conductor that I wanted to remain on the train past my reservation stop, I was told this was impossible, I *had* to get off the train, IndRail pass or no. In the end, after being nice, being polite, being firm, being slightly sharp, I finally had to scream, cry and stomp my feet for them to do what I was told was not only the possible, but the only option. I find throwing a fit to be rude, dehumanizing, undignified, and embarrassing. However, getting off teh train at my original stop was putting my life- and the lives of my traveling companions- at great risk. I did what was needful, and will never forget. Was the conductor to blame, or the people in the train office? The attitude at the train office seemed to be that why should they work when I, as a westerner, could scream and yell at teh conductor to get what I wanted? But to me, forcing me to scream and yell is the ultimate insult. It shows clear disrespect not only for me, but for that train conductor, who was doing his job; the train office people had the power to change the reservation and avoid the problem, and chose not to.
School personnel are like train office people in India. They only do what you scream, stomp, cry, and yell for. They complain about parents not coming for meetings, but considering the abuse *I* get at IEP meetings, I can't say I blame other parents for saving their sanity and not wasting their time on them. I came to teh last meeting with a letter from Joey's doctor, the latest research on autism, and an analysis of Joey previous educational experience, as well as the extra training in autism and strategies for autism provided by teh department of education. All of these were promptly dismissed as "not individualized." Excuse me? Is my doctor not an appropriate expert on my child? Is my only real option to put my child in a specialized, private school? There is something inherently wrong with a special education system that has no intention of providing students with the same opportunity at independent living that is provided to "normal" students. The goal of special education here seems to be to keep kids- especially high-functioning ones- in special education.
So I lay awake at night realizing this time next year, I will be stomping my feet, losing sleep, and spending whole days in tears over the definition of "Least Restrictive Environment" and the fact that the school would rather my child rot in a ditch than provide his teacher with a paraprofessional (to the lay world, an aide) to help him/her teach Joey the basics of kindergarden curriculum. Joey's problem is not socialization- he LOVES other kids and WANTS to play and please his teachers- his problem is communication. Its a gap that could well be bridged with the simple addition of a paraprofessional to the classroom, so that Joey's communication problem do not interfere with the education and experience of non-disableed children in his classroom. In fact, such a paraprofessional would be good for everyone in the classroom- they help the teacher, not the individual student. But I want Joey;s teacher to have one, I will probably have to hire a lawyer. I'm sorry, that's just wrong. I need that money to provide Joey with extra therapies at home, so that he won't have to be in special education forever. I do my part. Why can't the school do theirs?