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Note: This is a comment that I wrote on the IEP process for a discussion list awhile back. Someone just wrote and ask for permission to share it with their school so I took another look at this. Since I don't have the time to rewrite it for the website at this point, I have decided to share the letter as the subject matter is SO important.
Comment on IEP's
I have been watching this discussion about treatment in special education with much interest. As I travel so much I see the stark differences between special ed and inclusion throughout the world. Richard's stories are not uncommon. Sadly, the worst places I have witnessed have been titled Autism Specialist Schools.
I think that the problem lies in the fact that schools have forgotten what education or teaching means and have become so obsessed with assessment that they miss the picture completely. Now this doesn't affect children who are easy to assess very much, but when you are dealing with autism the symptom is AN IMPAIRMENT IN COMMUNICATION. In other words, these children are going to be very difficult to assess.......it is at that point we must make certain that the education continues IN SPITE of the disability. Crabtail describes this process so well.....how come other teachers can't figure it out?
I think we have to begin by looking at the IEP's. I am both astonished and deeply saddened by most of the IEP's I read for children with autism. The goals are all focussed on CURING AUTISM, not on educating the child. "The child will answer questions in full sentences by the end of the school year". The child will take part in classroom discussions with three words phrases or more." "The child will carry their own lunch tray." "The child will hang up his coat, or tie his own shoelaces, or say hello to everyone he meets in the hallway." and so on and so. Each line either deals directly with the impairment in communication, the impairment in social interaction, the motor control issues, or on eliminating the protective behaviours that the child needs to actually survive in this environment. In other words, the schools have taken on the momentous task of curing autism, which we know is impossible. Perhaps it's time to make the educational system move on to actually educating the child. When I am asked what I want in the IEP, my reply is always the same: the grade 1 (or whatever) curriculum. I am treated with distain as schools claim that it is not included because it is the right for EVERY child to receive it during the school year. But this is not happening in most situations, and in all honesty, the schools are only legally responsible for what is actually written on the IEP.
Parents, you sign those IEP's so you can start the process by absolutely refusing to sign anything of sparks of an attempt to cure autism. Adaptations to meet the specific needs of the child, such as using communication devices, etc. are the responsibility of the school and should be written in the school's IEP (if such a thing exists), not the child's.
Teachers, you have to give up your need to KNOW that everything that you are teaching is going in. In other words, stop wasting your time on assessing children who cannot be assessed. What does it matter at the end of 12 years if a child has been exposed to 12 whole years of curriculum without sharing with you if anything has gone in, or if he has spent 12 years at a kindergarten level with dog, cat, whatever, without a response. In both instances you will have "wasted" 12 years of the child's life. However, what we have learned through facilitated communication is that the learning was taking place in spite of the stupidity of the educational system for most of the people who use FC on this list so then the choice should become easy. You will also have happier students and teachers if an actual education is offered.
If this is difficult to picture in your mind, think about other learning situations that you have been in throughout your life. I spent years in Sunday School and was never once "tested" on the material that was shared with me, and yet I have retained it all. Maybe you can follow that example. I have never been tested on my favourite television shows, many of the novels I have read, the rocks stars I loved as a teen, the news stories of the day as the years fly by and so on and yet I retain that knowledge. I'm sure you do to. It isn't the assessment process that puts the information in so stop being so dependent on it and focus on TEACHING. That's what you are hired for.
What happens when you actually begin to teach? I have been involved with one child since he was in kindergarten. He had been exposed to 2 years of strict ABA by the time I met him so was already in major revolt. I kept telling the schools to "teach" him and they telling me that they were, as they focussed on curing autism to no avail. I kept telling them to raise their expectations and to assume competence and they kept telling me that they were, as they expressed their "amazement" when he actually progressed in some area (which tells you exactly where their level of expectation lies). Finally he got a teacher's aide in grade 5 who got it. Now this child had spent most of his school life, going for walks, playing the piano (the one thing he loves), lying on the floor kicking and screaming in the midst of meltdowns, running away and doing pre kindergarten skill work with very little response on his part. When I told her to expose him to an education at peer level or higher, she ran with it and began reading him Kidnapped by Robert Lewis Stevenson. I don't think I would have gone that high but it worked. Suddenly he was interested and excited about going to school. She worked with him for the year with that level of work and by the end of it he was speaking, writing, reading and so on.......everything everyone else had failed at.......She concentrated on educating him while the assessment part (and the curing of autism) came out all on its own. This year he is fully included in his regular classroom with her at his side and is keeping up with the rest of the class.
I started to write that kids can't do this on their own, but the amazing thing is that they can and do in spite of us.....as I think warmly of Wally, Jr., of Dan, of Tom, of Jenn, of Sue, of Sandra and so many other adults on the spectrum who were totally robbed of an actual education as children and yet are so wise.......but we really must take the responsibility of removing barriers instead of putting them in their way.