Sunday, June 12, 2016

"disability sensitivity training"? And MORE

Have you ever thought about this? I mean seriously, we have race sensitivity training, religion sensitivity training; we have to learn to tolerate others and their beliefs, fetishes and other weird shit. But if you are disabled pretty much you are written off as a weird person with nothing going for you. This seems like such a long time ago; since this book was written the boy has graduated college, with A's and President's List to boot.
Re-reading this chapter seems like eons ago; what the heck it is something that we went through and really that is what this blog is all about.....

In 2009-2010 I wrote a book. Since my book is unlikely to ever be published, I am taking a chapter of it and putting it here. This was our experience during a transitional period in the boy's life. See what you make of it:

Subtitle of this chapter should be "Getting Snowballed in More ways that one."

I know that isn't a fair statement. It is all a matter of perspective. This book is about our perspective; that is what we are going by and how the book is being written. It may not all seem fair or equal but when going through a difficult time it is harder to keep your thoughts and perspective together.

However, back in the _____ district school, we were getting stumped. This was just before the boy's full time re-entry into a regular district school. The boy was getting jumped (beaten on) in the therapeutic day school gym class for being too smart. This was happening regularly, I had conference calls with teachers and others when I was sick with pneumonia trying to get this worked out. Unfortunately, we needed a bigger change than just the part time mainstreaming. We weren't convinced the boy was ready for such a change, but we knew something had to happen. He couldn't take the bus as he was getting beaten by the other students, nor could he ride in a cab with one or more kids for the same reason. Essentially we were in between a rock and a hard place.

Quintessentially, we thought we were snowballed by the into believing our son was better than he really was. What parent doesn't want to believe that of their child? We don't know if he was really ready, but we did think so at the time. Ergo the old Talking Heads song with the refrain, "We don't know where we are going but we don't know where we have been." OR another case of wishing SO MUCH for your kid to have what others have is common. But frankly, the phone isn’t ringing off the hook here. It is so frustrating for parents when you KNOW something is wrong and there is nothing you can do about it. We, as special needs parents, all have been there in one form or another. 

At the time, what we thought could help was a full time change to Middle School. Making this kind of move is huge; putting your kid in a place where they may become dependent on a classroom aide could be disastrous (it was). What it came down to is that I didn't do my job as a proactive parent, the cuter half didn't have part in this, but I did and I needed to do more and didn't. The problems we faced at the Middle School level weren't really bad to start. Several things I didn't do were make surprise visits, ask too many questions and accepted too many things on face value. The worst of it is; I know better. I wanted to be comfortable and believe what people told me. I wanted to "live the dream" if only for a little while.

Had I verbalized my suspicions to to the cuter half, we might have done something about it. However, at the time, I was supposedly moving up in my career, I had things happening with other family members and I really wanted the boy to do well at school; no matter what. Telling me what I wanted to hear really didn't help much in the end. We really needed to stay on top of it more and keep the calls and check ins coming into the district again.

Would've, should've, and could've meant nothing is happening. The boy hates it when I say that but it is true. What the heck was I thinking? Obviously, I haven't been thinking clearly about the boy's placement. It quickly became apparent to me that I SO WANTED all of the good things to be so good and I wanted to forget that there were bad things in place. We decided that since we didn't know the "regular" district that we should just go with the flow and adjust to the new people, environments and things.

That was a mistake.

Going with the flow and thinking that the teachers and educators would be "professionals" meant that nothing got done. The IEP was violated right, left and center. As with lower level employees there are times when you need to sit on them to get anything done.

Legally, most schools will attempt to get by with the bare minimum. This should be making the parents the natural enemy of the education system. Although in many cases this is the facts; we prefer to be nice and live in a state of chronic denial…. no not really, but there are times when you really need to stay on their butts to get the IEP followed. IT is up to the parents/ guardians, whatever to insist on a quality education for your child. Don't be lulled into a false sense of security thinking that they have your child's best interests at heart. They don't.

During out son's last year in middle school we experienced a ton of IEP pain in the last month or so… at one point, we were counting down the days until he began High School. Our home district blamed him every time some kind of altercation came down with him involved. He rarely was backed up or defended by any staff (except his case manager) in front of the kids. It was hard on him and on the rest of us…. processing why a particular special Ed student would pick on him wasted many a therapy session. It was an amazing waste of our money.

In fact, one of the special Ed kids that targeted our son decided to stab himself with a pen or pencil and then accuse our son of doing it to him. Our son almost got expelled, and wasn't going to be allowed to graduate with his eighth grade class. What saved him was a couple of the boy's friends heard about it and then told the principal that the special ed kid with the problem had, in fact, stabbed himself with the pen or pencil and planned to blame our boy, just to get our boy in trouble. Now that is pathetic. Did anything happen to that kid, well sort of; we heard that he was then escorted everywhere and incapable of walking the halls alone during the school day. Later we heard that the school hadn’t even contacted the other student’s parents and they had no idea that their son was incapable of walking the hallways of the school on his own. We also got a letter for our son, apologizing for trying to get our boy in trouble.

Please note: forcing a special ed kid to write a note of apology under duress is similar to forcing a drink on an alcoholic. It is unkind, unfair and just plain mean; to the victim and the kid forced into it. It really doesn't teach anyone anything except how to manipulate others to be getting out of real punishment or discipline. "Look, I can self harm, blame someone else and all I have to do is write a note saying I am sorry." Really, how relevant is that? It isn't, it is comparable to going to your wife, beating her and then saying, "Oh look, here is a note, I am so sorry I bashed your head in." A forced apology means nothing.

Here is some of what went on at the IEP High School transition meeting and why we were so frustrated. Mind you, we are comparing 8th grade physics to 9th grade biology…. it is just pathetic. 

Anyway, here we go:

From the 8th grade science teacher:
"Thanks for the e-mail; it is truly wonderful how supportive and engaged you are in ___'s education. In response, I do show concern with having ___ in the regular section (science). He has an aide next to him most of the period currently, as well as during tests. During his warm up he regularly gets frustrated when he doesn't know the answer and has to be comforted by the aide and encouraged. When the students have to write 3 sentences in their warm up, ___can write only one. I grade him on that one, but it will be unlikely that those grading accommodations will be present in a regular class. Lab directions and activities are often overwhelming and he consistently needs help in staying on task and completing his work. ___ is smart, but does need the extra support."

Our response:
"This is very disappointing.
We were not aware that there was such a struggle for ___in your class. Last October at the PTA meeting we specifically asked you about issues with the curriculum and class: we were told that everything was fine and ___ was doing well and a good choice for a lab partner. We had heard nothing about problems in your science class prior to the IEP meeting on Monday. He rarely has homework in your class, so if material is modified we knew nothing about it before today.
 Now we are told the (above)??
We don't get many positives in our lives and when we heard from you in October that things were fine, we were under the misguided delusion that if things in the class changed we would have been contacted.
SO much for independence and working well with others…. this is really terrible news to us. We wish we had heard about it sooner so we could have done something to help ___with your class at home.
I hope you can empathize with our frustration; this is one class that has always been a strong suite for ___ and now we are finding out he is barely managing?? This entire IEP process this year has been fraught with disappointments to us."

Oh there is more…. she backed off when we expressed the above. We then heard this:
"I am sorry if I misled you in our earlier meeting, I can see where this would be frustrating! The truth is; he is working well with his group. Now because I did not have contact with him last year, I have nothing to compare his progress to in science. He has shown growth this year in the ability to reason scientifically, organization and participation. His areas needing growth are complex directions and accomplishing tasks such as lab questions and procedures, without the assistance of an aide. The modifications ___ receives for science are limited. According to his IEP the only modifications on the test are form related. Which means instead of having 4 choices to choose from Abe may get 3. He is given more room to answer questions and can answer essay questions with 3 sentences rather than 5. As long as the question is fully answered. During note taking in class, ___has expressed some frustration at times, so the following assistance has been given; he will fill in blanks to the notes, or highlight important portions of the text on a copied sheet. He does a great job of this and it allows him to process the information instead of just focusing on writing things down. Homework is done well, however by the next day he often doesn't remember how to do some of the portions of the homework. He does ask me for help when needed and today in our study session he showed that the lessons he was learning were mastered!!"

Misunderstand? What exactly did we misunderstand? The fact that she didn't know our son and who she was talking to at the parent teacher conference?? This was so bizarre. Ok, now for the really hard part. Finally, the cuter half got a load of all of this and came up with a doozy of a response. It is a long one so if you aren't really interested in this section you can skip it…here it is:
"Thanks for the details; we are just frustrated as we were given the impression at our transition meeting that ___ is totally incapable of even finding the lab table in your room. We are meeting with the HS twice next week and now need to decide if ___ would be better served in a regular section class with a classroom aide, like he has now and we have been told that they do offer; or if he should be in the co-taught prep level class without and aide but two teachers.

Our concern is that the prep level class will encompass all the undiagnosed BD and less than motivated students and ___ won't be challenged enough; and will resume some poor behaviors as he does mimic what he sees.

We have the textbooks and the entire semester of assignments from ___ for both classes and the area of concern is the prep level than what he has now, and the regular section has a higher level book than what he has now, but it is in no way above his reading ability, so both books are fine. The homework for prep consists of read along and fill in the blank notes, the regular sections does like you do now read the section and complete the notes. We think he can do the work in either section.

Prep would risk him being in less than desirable company and he would be less challenged academically, but would have to develop "me" independence, whereas in regular he will be in with normal goal oriented students like he is with now, but would need assistance similar to what he has now.

So do we develop independence and risk falling back or worse in the prep level, or do we insist on a regular section and continue trying to wean him of the aide? The biology course work is a topic ___ loves and the sections they are in now are about things he already studied. Plus there would not be as many labs in biology as you have in physical science and the math would be less. He is doing amazingly well on the speed and velocity as he is just now starting those types of problems in Math class. What we have covered this year in science is not topics Abe has ever seen before and we are comparing new topics to a science area (biology) which ___ loves.

So if you could let us know and you do not have to worry will not be made, is Abe at the same level academically as his peers in your class or is his grade, as we have been given the impression, not a true reflection of his talent but rather and "A " for effort grade and he really needs to be in prep because he does not have the ability to understand the concepts and do the work expected of him. We are under the impression from working with Abe at home he understands the topics and is struggling with directions and needing extra time and like you said reduced choices and more space to write things down?

Please know we appreciate your candor and all you have done for ___, he has come so far and you working on the math with him are really helping him in other areas, last night he knew the work and knew what to do, which is huge, as he in the past would have refused to do the math. We are just very worried about the classes at HS; we can not let him be in with BD kids or in classes where the teacher thinks he is not capable of doing the work, which is why they are in prep.

We are also concerned that middle school is basing their recommendation off lee than accurate information as the Physical Sciences are a much more abstract topic then biology, and abstract is not goof for Asperger kids. We are just very frustrated that HS has Classroom aides and that middle school is recommending things for ___ based on the assumption there are no aides at HS and the choice is total independence in regular or two teachers in area. So it all comes down to us not knowing how much assistance ___ is getting and the amount of assistance varies depending on who we ask and the time of day we ask.

Please understand our frustration here, as ___ told us in his IEP report that in social Studies he was on task about 85% of the time and that the aide organized his work for him, we interpreted that to mean ___ is doing the work himself and day-dreams more than a regular kid, but we since found out that we should interpret it to mean 15% of the time the aide is working with ___ and he is incapable of being there without an aide. Same with math, she told us he was on task 97% of the time but no mention of an aide helping him, and for LA where he has a one on one aide, she works with him 37% of the time so we were lead to believe, OK ___ is in need of a little help in Math, has a day-dream problem in social Studies and is doing quite well in LA given 63% of the time  the aide is pointless and she is probably working with him part of the time she is because she has nothing else to do. We had NO idea that these reports really meant ___ is incapable of being in any regular section classes because the aides are with him for most of the class. We also ask all the time and get told things are great and now we find out he is dependent ton aides and getting graded on effort and not ability.

We have spent a week now shell-shocked and in tears over what we see as half truths and sugar coated reports. Or under the belief that _______ has duped us into believing that ___ has been in regular Ed classes for t3 years when in actuality he as been in prep level classes with lower content and expectations for all of the students in the class, and he expectations are the lowest of the low. We are seeing these prep classes as merely a way to lie to the parents and tell them their child is in regular ed when in actuality they are in a special ed class with a regular ed teacher, as it allows the school to pay the teacher less money, have a happy family who won't question anything anymore because they are in a regular ed section (trust us we know of f3 families who think there child with autism will never hold a job, so to them prep level is heaven for them, no stigma of special ed) and before now no one has questioned this system.

We just do not know what to believe anymore, as we thought the aides were classroom aides working with ___less than 15% of the time and now it turns out he is dependent on them and we are made to feel like the dumbest people on the planet for not demanding weekly meetings with his team, visiting ______ unannounced to observe  classes  and hiring independent observers to watch ___ so that we would know what was really going on, instead we believed what we thought we heard in meetings and read in the reports we got from _______. No one has ever brought up the academic deficiencies to us, we have been working all the time on behavior and social skills and figured the rest was going great as no one told us differently. Please make sure in the future you and the rest of the staff tell parents how much assistance their kids needs as right now we fell like we have been lied to and that ___ has just been passed along the system as yet another one of those special ed kids."

This response was one of the longer ones from us. We had a lot of negative frustration during the transition process to high school. At this point we decided to pull the middle school out of the transition meeting process. We continued to meet separately with the high school to work out a plan for the boy and come up with programs and things that would work for him.

Talk about feeling abandoned and alone: we just had no hope at this point and went to the elementary school district offices to try to make sense of this problem. We both just cried….non-team members were at the boy's IEP meeting; our case manager lied to us about her being there and then to hear what we heard. The devastation of our thoughts, beliefs and feelings were complete. What more can a parent do? Eventually the details were worked out with the high school however; our relationship with the principal of the middle school was diminished.

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