Delighted by the changes in our son's behavior and feeling more confident that we had made the right choice by discontinuing the medication, especially due to the problems it was causing for his heart....we had more confidence as our son began Third grade. Our son loved his Third grade teacher -- she was wonderful! His fellow classmates were very accepting and compassionate towards his issues.....and finally for the first time since he entered the public school system, we felt confident that things were going in the right direction. Yes there were still some minor meltdowns and issues....but things were finally going well.
Of course at that point, the "powers that be" at the school were still upset that we had chosen to discontinue medication....so they tried to throw a monkey wrench into things as much as possible. "They" wanted us to switch our son from the inclusion/general education program to the special needs/resource room classroom (for no logical reason of course - just so it would make it easier for them to keep all of the kids like our son in "one place"). Of course when we pointed out the flaws in their logic/argument for that and basically put our foot down and said "NO".....they looked for other ways to battle us. "They" decided that our son was too attached to his aide.....and it would be in his best interest if they made a change, and assigned a new aide to work with him. Of course we failed to see their logic in that idea....our son had worked with Miss "A" since he attended LTC. She knew him, knew what triggered meltdowns, knew how to calm him down, etc. He was comfortable with her -- he trusted her -- and he worked well with her. As much as we argued and fought, the school won out in the end....and a new aide was assigned to our son.
That was the worst thing they could have done!! He did NOT click with the new aide at all. I honestly can not put this in a polite way....she was a total bitch (sorry if that word offends anyone). She would yell at our son for every little thing, tried to push him to conform to doing things like all of the other kids, refused to let him wear his headphones (he has super sensitive hearing).....and the list goes on and on. Our son began to regress.....behaviorally, academically, etc -- you name it -- it happened. We tried to survive the best that we could because we knew the transition to Fourth grade would be coming soon and that meant a new building and a new teacher (and hopefully the switch back to his former aide).
Well the transition to Fourth grade came and went....and the "powers that be" wouldn't grant our request to assign the previous aide to work with our son. During Fourth grade things really "hit the fan" -- at least 3 or 4 different aides worked with our son (they kept switching things up), the teacher was timid about working with him and preferred to let the aide take him to the other side of the room & close the divider -- so they could work one-on-one separate from the rest of the class....the other students began to treat him like some type of freak and/or outcast.....he was losing friends at a fast pace. He began to have more frequent meltdowns, started to become aggressive, and was cycling back into previous behaviors (things he hadn't done in years!).....he was frustrated, we were frustrated -- and the school was of no help at all. The teacher finally changed her attitude a bit towards the end of the school year, but by that point it time it was too late in my opinion.....our son was already on a backwards cycle.
To top it off, he was getting sick a lot.....numerous colds, sinus infections, ear infections, etc. A visit to the ENT's office determined that he would require surgery to remove his tonsils and adenoids....and would need to have tubes placed in his ears. Of course this news put me into a whole new level of panic. How on earth would I explain to him what needed to be done? How on earth would we get through the surgery and recovery with him being a special needs child? It was difficult enough trying to take him to a normal doctor's appointment....and it took at least 4 people plus myself to hold him down when he required a shot or any lab/blood work.....how on earth would he get through a surgery? Granted, he was verbal and seemed to comprehend stuff easier than some other children...but still, this was what I considered a major surgery. As much as I searched, I could not find anything that would help to explain what had to be done....as many "professionals" as I questioned, no one had any info that would help to explain things to him. So.....I decided that if I couldn't find something, I'd make my own social story book. The day of the surgery came.....things went fairly well, although it was difficult for the nurse to get the IV into him and they had to give him something to help him relax a bit first. Recovery went fairly well, although afterwards it seemed like there was one issue after another.....and the remainder of the school year was very difficult.....for our son and for us.
Now it was time for Fifth grade.....the teacher was horrible (she made it very clear from day one that she did NOT want an AI student in her classroom), the aide was extremely difficult to work with, and it seems as though there was one issue after another. Our son was suppose to have a laptop to use for certain assignments but the aide refused to allow him to use it -- only because she had no clue how to work the various programs -- thus it sat on the teacher's desk and collected dust. To top it off, our son began to have more health issues & was going through one growth spurt after another.....and I was stressed beyond belief. It got to the point shortly after the Spring Break holiday, where I was being called to the school almost on a daily basis. After numerous meetings with "the powers that be" -- we decided it was time for our son to be switched to the "home base" program......thus he would do his school work from home. Unlike normal homeschooling, with the home base program there would still be support provided by the ISD and school district. The school district would provide all of the assignments & tests for him to work on at home, and he would still receive speech therapy. During Fifth grade -- the teacher, aide and school staff did not follow the terms of the IEP.....there were so many IEP violations it isn't funny! Thus I could have fought them and made things really ugly....but I just didn't have the energy to fight any more.....
I was tired......tired of fighting the school, tired of fighting with doctors, tired of fighting with the ISD. I felt beat down.....and as if all of the wonderful progress our son had made just a year or so earlier was slowly slipping away. I began to doubt myself as a mother.....maybe "they" were right -- maybe he wouldn't be able to graduate from school, maybe he wouldn't be able to drive a car, maybe he wouldn't be able to hold down a job....or any of the other things that "normal" kids would one day do once they reached adulthood. Maybe "the powers that be" were right -- I don't know, all I do know is that I felt like a complete and utter failure. Our son went from a straight A student to struggling with his assignments....he went from having friends and being accepted by his peers, to being treated like some outcast -- "the weird kid that wore headphones"......I felt lost and alone, unsure of how to help him and how to get him back on track academically.
Looking back now on things.....I can say with almost 100% certainty that the issues that occurred were a result of a combination of things -- the health issues (including the tonsil & ear tube problems), numerous growth spurts and what effect that had on him, and most of all -- the numerous battles we had to fight with the school & ISD. Perhaps if they wouldn't have pushed us to do what they wanted and changed around his aide (among other things) -- perhaps some of this wouldn't have occurred? Perhaps if they really would have considered what was best for our son -- some of these issues and the backwards cycling in behaviors wouldn't have occurred? In all reality, he was one of the few AI students to be placed in a full general education setting -- and they didn't know how to handle that. I guess if nothing else, one positive thing that came out of all of this -- the school district & ISD learned from their "mistakes" -- now there are better programs in place on the Elementary level for other AI students who are capable of being in an "inclusion" general education program, there are low stim rooms with all sorts of equipment in them (instead of using a little closet with a bean bag chair as a "low stim" room).......and the teachers, aides, staff, etc are better trained on how to work with children like our son. It just sucks (sorry, can't think of another word) that our son had to be the ISD & school's "guinea pig"......it sucks that I had to educate a majority of the staff on how to work with an AI student, create schedules & PEC's cards for them to use, write all of the social stories, etc. And it sucks that because of "the powers that be" and their inabilities....our son ended up struggling so much and slipping backwards in his development & academics.
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