I guess it was all too good to be true.
We had just started Nathan on a new medication Wednesday morning. Dh and I decided not to share that information with the school. They have made it very clear that they have a strong bias when it comes to medication, and we feel it influences the kind of feedback we get. So we figured we had a week where we were only giving meds in the morning, before they had to be given in the middle of the day as well, so we wanted to see how he did for one week, without anyone knowing that a change had been made.
Wednesday I got a call from the school nurse. My heart stopped when I heard her voice. I feared that Nathan might have had some kind of reaction to his medication. (Why else would she call?) She told me Nathan had had a meltdown, and had been sent to the office, and she asked what kind of new medication he was on. I told her, believing that if a school nurse asks me, there must be some medical need to know this information, right? Wrong! She then informed me that his special ed teacher heard Nathan say he was on a new med, so she instructed the school nurse to call me to find out what kind it was!! GRRRRRRRR!
I am so tired of being lied to and manipulated by the IEP team.
While talking to the school nurse, I questioned her about Nathan's meltdown. I was very worried about him. The nurse could tell me absolutely nothing about what happened, why it happened, what was done about it, etc. However, she told me that she was sure the special ed teacher would fill me in because "she's good about that." Yeah right. I never got a call back, no note, no phone call, nothing. I was TICKED. She can sure call me when she wants to talk about drugs, but when I'm concerned about my son's well-being, that isn't important enough to warrant picking up the phone!
I can't believe she would be so bold and so manipulative, to not only insist on knowing the meds my son takes, but to have the school nurse call to find out is really despicable.
This got me angry enough to shoot off an email to the woman's boss. I complained about her calling to find out about the meds, about the nurse going along with it, about how we've been interrogated through numerous IEP meetings about what meds he's on and what doctors we've been to and what the doctors say and what we are going to do next regarding doctors, etc. I informed him that I will no longer discuss any medical issues with the school staff unless there is some kind of medical urgency, and then it would be with the appropriate staff member (like the nurse, not the special ed teacher), and that any medical information I provide will not be shared with anyone on the staff who asks about it. I also said that if anyone had any medical opinions or concerns about my son, to put it into writing and I would submit it to his doctors, but I would no longer discuss any of this with them.
I further complained about the fact that I had been very forthcoming up until now, with all medical information, and I do not appreciate their efforts to lie to me and manipulate me to get even more information. I complained about the lack of professionalism I've faced, and the violations to my son's privacy and his rights.
I complained about the fact that no one could call me back and let me know what happened with my son's meltdown. I said that my son had complained of a severe headache numerous times in school, and everyone ignored him. He shouted to kids to be quiet because his head hurt, and they ignored him. No one offered to assist him. No one noticed when he backed away from his desk. No one even came to him until he had thrown papers on the floor, and that was because they wanted to remove him from the room. No one showed him his new "wellness chart" that we all worked so hard to create (It's a scale that shows emoticons to represent when he is happy all the way up to major meltdown, describes how he feels in each stage, and gives him possible ways to calm himself). Nathan went through stage after stage, escalating, but no one bothered to acknowledge his signals. You would think since we just created the chart that it would be fresh on their minds, but they didn't pull it out until Nathan was in the hallway kicking lockers. Great timing. Had they showed it to him when he first started complaining of headaches, he might have completely avoided the entire meltdown!
But no, why bother using any of the de-escalation techniques? Drugs are the only real solution, right?
I also complained about the fact that they are continuing to send home class work that he didn't finish in school as homework. So this is on top of his regular homework. For the weekend, we were supposed to write a report on New Jersey, another on volcanoes, write an essay about the American Flag, and create a monument to a person or idea. Oh yeah, and the handouts that were passed out as well. Oh, and the daily reading assignment. And studying for his spelling test. And they're supposed to be REDUCING homework, not increasing it! (I blew off the volcano report, since they didn't bother to tell me about it during his suspension or immediately after his return.) Who cares that this was discussed repeatedly in his IEP meetings as being a major contributor to his meltdowns? And even after insisting in the last five IEP meetings, they still won't put a time limit on his homework! They just say they'll send home "less," but it never happens.
I told the special ed director that my trust and my faith is shattered. I don't believe they are going to even look at the IEP, that we did all this work for nothing. They want to just blow off all the accommodations, blow off all the charts and recommendations for how to make my son successful in school, and wait for us to medicate him to the level they want so he's easy to teach. Or maybe they think we'll stumble across "the magic Autism Pill" that will turn our son from autistic to neurologically typical, instantaneously...?
I don't know if my letter will do any good, but I tried. Now, I'm done waiting for them to do the right thing. These people will be called to task.
Don't get me wrong. There are some people I've been dealing with who really do care. One is his Speech Therapist. She's fabulous. She's made real progress with Nathan, socially. The school nurse was manipulated into calling me, but I do like her, and I do think she really has a good understanding about what Nathan goes through, and some valuable input into how to help him. I still want to cheer every time I think of her telling the IEP team that she doesn't think Nathan has ADHD. (She's right, by the way). The Autism Team has been great. They offered real solutions to help Nathan, all of which I think could work, if only the school would actually implement the ideas. And the special ed director (the special ed teacher's boss) seems like a very nice man, who truly cares about helping kids, and would bend over backwards to make it possible.
However, I do think the special ed teacher is a terrible choice as a case manager for my son. She only wants to focus on medications, and how to deal with my son once a meltdown occurs. She doesn't have any interest in avoiding a meltdown, or de-escalating one, and dismisses any advice about what triggers them She is deceiptful and manipulative. And she has a definite bias against my son; believing he should be removed from mainstream classrooms, regardless of the fact that he's demonstrated he can be successful in them, because he melts down when she ignores all the things that can escalate him. In her opinion, if he melts down, it's because we need to give him a bigger or better pill. Period. And if we won't, she'll just kick him out of mainstream class because he's too disruptive. She doesn't have to work at helping him succeed then. Until her boss came to the IEP meetings, all she wanted to know is what WE were going to do, to "fix" Nathan. What doctors, what drugs? She dismissed me when I spoke of why Nathan was having meltdowns. Too much homework? Pah! 30-40 hours of homework a week shouldn't have anything to do with it. Sensory overload? No! We don't believe his sensory issues have anything to do with his meltdowns. (!) His dog died? That wouldn't do it. We moved his desk? Why should that trigger a meltdown? Oh, it's happened before? Well, I still don't think that has anything to do with triggering a meltdown. Everyone ignored his signals that he was getting overloaded? His signals are not readable. No one gave him any warning of changes or transitions? He doesn't need that much warning. Okaaaaaaaay, so you're going to ignore all input about what's causing his meltdowns, and then you'll yank him out of mainstream class when he has them. What a peach.
I keep telling myself not to worry about this all summer, but I suppose I will anyway. At least his new teacher sounds very encouraging. I have to be excited for him to have a teacher who actually wants to take a personal interest in him, since she knows someone with autism. And the Autism Team has been enormously helpful. They will give a sensitivity training in the beginning of the new school year. (I wanted to do that this year, but the IEP team refused, until the Autism Team recommended it.) And the IEP has been re-written to have more specific goals. And the special ed teacher's boss has been involved in the meetings, which really helps. And the Family Support Director from Easter Seals has been fantastic in getting things on track. Yes, there have been a lot of positive changes and steps taken.
And then there's me. I'm done playing "nice." I'm done hoping people will do the right thing, and I'm going to demand it. I'm not a bad person, and I don't have unrealistic expectations, and I'm not asking for anything outrageous. I simply want people to treat my son and my husband and myself with respect and dignity. And to do their jobs willingly, thoroughly and ethically.
Not so much to ask, really.
No comments:
Post a Comment