About Me

A couple of years ago, I found my autistic child locked in a small cold cement cell at his school. The cell had no windows, no furniture, and was slate gray with low lighting. The cell was also sound proofed so parents and teachers outside wouldn’t hear him crying. I am writing this blog as a campaign to change the way these children are perceived and treated in our society.

Friday, October 15, 2010

Importance of Parent Involvement at the Special Needs School

Another important question to ask the special needs school that you are considering enrolling your child at is: Does this school have a Parents Teachers Organization? If not, are you opposed to starting one?
There are several reasons that parent involvement is very important. The first of which is, you want to know other parents at your child’s school so that you can arrange play dates with your child. A second, very important reason, is that you want contact with other parents if your child starts having problems at the school. For an autistic child, some very minor things may become very difficult for the child. Even though your child is in a special needs program, you may find that neither the teachers nor the school administrators are willing to accommodate your child in a fashion that you believe is best for your child. Because of Health Insurance Portability and Accountability Act (HIPAA) and other confidentiality laws, the schools will not give you any information on any other students at your child’s special needs school. You want to make contact with other parents at the school BEFORE your child starts to have problems.
As an example of what type of frustrating experience you may have working with the school, please read the following personal narrative that I wrote after a particularly exasperating meeting. The end result was I had to take Patrick (not his real name, some of this is very personal and I didn’t want to do that to him) out of the school I described. He is currently in a much more cooperative school system where they do listen to my input. One main difference between the school I describe in the narrative and the school he is at now, is that the current one has a strong PTO group. The administrators at the other special needs school flat out refused to alter my son’s programs in the most simple ways. In the story I wrote, I was simply trying to either get an answer key for the homework they sent home, or for them to limit the homework assignments to math, spelling or sentences where there would be a clear answer. This was necessary because if they asked homework questions that had more than one possible answer, Patrick would become highly agitated if he didn’t know for certain that the answer he wrote was correct. His panic was caused by the fact that the school would take away his free period at the end of the day if he didn’t do the entire homework assignment properly. I thought this type of punishment to be draconian, but they maintained that “it was not a punishment.” Hmmm. Interesting that the behavior therapist there thought that if she called it “not a punishment” that it wasn’t … even though she would take away something from him that he dearly wanted.
So please read the following as an example of a reason for a strong PTO group. I have found that at schools that have the increased participation from the parents, you find administrators and teachers more willing to consider what the parents have to say. In the following true story (true to the best of my recollection, but the names have been changed to protect the guilty :o) the teachers and the behavior therapist did not consider input from the parents to have any value at all. They had their system and they would not make even small changes or concessions for the needs of your child.

Personal Narrative:
My short finger nails were making a racket against the steering wheel, all the frustration and angst manifesting itself in the tips of my fingers as they tapped out a marching tune. I looked up at the building and wondered what barb or insult was waiting for me inside the depressing brick building … clickity click click, click click …. School buildings in general might not be known for their architecturally pleasing qualities, but I swear this building had an additionally depressing aspect about it … click click …. As I looked at it, I could almost see on aura around it, a haze of grayness, blackness …. clickity click …
I glanced over at the time and let out a long sigh … time to go in. I rung the buzzer at the front door and the cheery receptionist opened the door and smiled. She seemed so upbeat, so out of place. As I sat in the waiting area, I wondered why the grayness of the place did not seem to affect her. Even though current school administrator Mr. Knight had been working here for a few months, he had not yet exercised all of the demons that lurked in the shadows, and I wondered why those demons tolerated her positive attitude …
“Ms Kelly?”
I looked up to the smile on the face of Ms. Buttermint and then flicked my eyes to look into her cold, unsmiling eyes.  “Yes?” I replied.
“We are ready for you.”
I followed her up the stairs and into my son’s class room. Waiting there were Patrick’s two teachers Ms. Jolie and Mrs. Vanderhoff. His speech therapist, his gym teacher, and Ms. Buttermint also joined the meeting. One by one they went around the room talking about what a great job they did to Patrick during the semester, the wonderful way in which they handled him. Although the difficult previous director was no longer physically here, the results of his hiring and training these people was apparent.
After they were finished singing their praises, they asked me if I had any questions … it seemed a formality, a question left over from a horrible day in which the parents were supposed to have some input or say in their child’s care. I believe that they hoped that I wouldn’t respond.
“Sometimes I have trouble with Patrick’s homework assignments.” I confessed, “I never have a problem with the math homework, you don’t have to worry about that, or when you send home the sentences or spelling … but, there are some grammar questions that I may not know the answer to, like the problem you sent home about the simple subject and the complete subject, I had no problem with the simple subject, but I couldn’t remember if “a” or “the” would be included with the complete subject. Not knowing the answer makes homework very, very stressful for Patrick, for when I can’t answer his questions.”
A supercilious smile spread across Ms. Jolie’s face. “Well … the complete subject would include the ‘a’ or ‘the’ while the simple subject is only the”... and then I think she gave me an example of a simple subject, I am not certain because I stopped listening and tried to formulate a response to steer the conversation back to my request and away from her attempt to belittle me.
I replied, “I understand, as I said, I have no problem with the math or spelling, and usually I know the grammar, but sometimes I may not know for certain and he becomes very upset because he knows that he will lose free period if he doesn’t complete his homework. Is there any way not to give him homework like that?”
The other teacher, Ms. Vanderhoff responded “We send homework home that we have gone over that day, he should already know how to do it as I explained it to him. He shouldn’t have any questions.”
“And we have to send homework on the lesson that we did that day,” piped in Ms. Jolie.
“Ummmm,” I stammered as my mind was reeling wondering why on earth that they would make an issue of such a small request, “ummm, perhaps you could photo copy the answer key … ?”
“No, no we can’t do that.” Ms. Vanderhoff sniffed, as if I had asked for secret government documents, “besides, we need to know if Patrick needs help with his homework, we need to know what he has problems with.”
“But, I could let you know that … I am not going to just give him the answers, I just want to be able to answer questions he has … I am only asking a small thing …“ my voice trailed off, my mind still amazed by why these people would choose to be so difficult.
“I think it is good for Patrick to have some hurtles, and to realize that his mother doesn’t always have the answer.” Ms. Buttermint stated.
She was claiming that it is good for the child to have some difficulties to overcome? That was her position? With all of the adversity that this child has faced, all of his daily struggles, was she really recommending that we purposely make the learning experience more difficult for my autistic child?
I breathed deeply, and tried again “At home, there are many times I have to prompt Patrick to do his homework; it is something that I have to push him to do. To push him and then to not be able to answer his questions puts me in a difficult position, and it is very upsetting to him. He was crying for over an hour about the complete subject question.” I then turned to Ms. Jolie, “You know how Patrick is, how would you handle Patrick if you tried to teach him something but then when he had a question, you said you couldn’t answer it? You tried to have him do an assignment, but when he asked you something, you had to tell him you didn’t know? Wouldn’t that be difficult?”
Ms. Jolie looked down at her hands, she knew I was right.
“But I already explained it to him, he shouldn’t have any questions,” interrupted Ms. Vanderhoff. “I don’t understand why he would need to ask you.”
Incredulous, I looked at her and tried to think of examples, “perhaps the homework is worded in a slightly different way, or he is now home and he can’t quite remember what you said …” was I really trying to explain to a special needs teacher why a child with learning disabilities might need something explained to him more than once?
“As I said, I think some struggles are good for Patrick, can’t you possibly see our point of view?” Ms. Buttermint interjected.
“ …. But it is such a small thing …” I pleaded.
As I was starting to drown in their half truths and screwy logic … memories of Patrick at home rocking back and forth crying saying he was going to lose his free period and repeating “I’m stupid” over and over and over brought all of my frustration’s to the surface.
“No, I can’t see you point of view because you are not trying to see mine,” I snapped.
“We are not trying to make things difficult for you with the home work, so don’t blame us for this.” responded Ms. Vanderhoff.
“I didn’t blame you before I explained to you what was going on, but now that you know and you choose not to do anything I do blame you.” I stood up and added (as calmly as I could) “thank you for the good job that Patrick has done this semester,” and left.  Or I said something like that; I can’t really remember my exact words as I was so upset.

The narrative goes on from there, describing other difficulties I had with the school and why I had to transfer my son out. It is a hard decision to switch an autistic child to a new school as even small changes may overwhelm them. That is why I recommend asking many, many questions before you enroll your child in an out of district special needs school … and I will say again what I said in my last post, don’t let an administrator in the special needs department convince you that you have to pick from one of two schools. If the schools that they show you are inadequate, do research on line to find other options!!

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