Be On The Lookout

Just the kind of phonecall that you don't want to hear...

On Thursday, I received a phonecall at work from my son's daycamp. They said there was an armed robbery in the vicinity of the camp, and the robber escaped on foot in the direction of the daycamp. The police were there, and the camp was under lockdown. They gave me very specific instructions for how I was to pick up my son, and gave me the option of picking him up then, or at the usual time, assuring me the police would be present the entire day.

Yikes.

I was not only frightened for his safety, but also for his ability to handle the drastic change in his schedule, and the idea of 65-70 kids being cooped up in a small building (room). Talk about your sensory overload...

Work was very understanding, and allowed me to go check up on him, with warnings to be careful and not put myself in danger. I didn't care about my safety, I just needed to know my son was okay. But it's nice to work for a place that gives me so much flexibility during work time.

I went to the daycamp, after following their inconvenient, yet understandably necessary, steps to get in. They weren't kidding about the police being there. So were all the big shots in charge of the camp. There were tons of police cars, and I don't know how many undercover cars (I saw a woman with handcuffs dangling off her belt climb into a plain looking car). The parking lot was packed with police. I was awed, and relieved. They stopped me before I could even get close to the building, and we went through more secuity measures. Finally they told me they were going to bring my son out to me. I didn't want to do that, I wanted to go in and just see if he was alright. They finally agreed to allow me in.

I walked into the building, which was packed with about 70 kids, covering every inch of the floor. The volume was deafening, with the typical happy squeals of playing children. While everything looked safe and sound, I was instantly worried about what that level of noise was doing to Nathan. It took me a little while, but I finally located him among the sea of kids. He was fine, though I could tell he was getting over-stimulated (but not to the point of meltdown yet). I whipped out a pair of earplugs (I always carry a bunch in my purse), and handed them to him. He smiled, thanked me, and instantly put them in. Right then, his aide walked up to me, and informed me apologetically that he had offered to get Nathan his earplugs, but Nathan declined. I just smiled and told him that I didn't ask him, I just handed them to him. (Sometimes it's best not to offer the option). I also assured the aide that it was fine. I just knew this was going to be too much for him, and would cause sensory overload. It's one of the reasons I came. I stuck around for a while, to reassure myself that all was safe, and to make sure Nathan wasn't going to melt down. It gave me a good opportunity to talk with his aide, who seems to already have a good feel for Nathan's signals, and how to handle him when he's over-stimulated. The guy is really good with kids. Once the camp was allowed to go outside again (with police escort), and continue with their regular scheduled activities, I left and returned to work, leaving Nathan there. At that point, the place seemed as safe as Fort Knox. And Nathan looked out of the woods, so to speak, with any sensory overload. And none of the kids seemed frightened, or even aware that anything out of the ordinary was going on.

We returned to the daycamp in the evening for the family night. The police were still there! I thought this was awfully impressive. By this time, the thief that had inspired the lockdown had moved on and hit two other locations, several miles away, and was obviously no longer in the vicinity, yet the police stayed to be sure, and to reassure the families. I later found out from Nathan that the police gave the kids talks about "stranger danger," and they also talked to the kids about what it was like to grow up to be a police officer. He thought the whole thing was really neat. Gotta admit, I did too.

So as frightening as the phone call was, it was so cool to see that they would handle things so well in the event of an emergency, and that they would go above and beyond the call of duty (both the camp, and the police), to keep the kiddies safe. It gave me a whole new sense of security, where Nathan was concerned.

And Nathan had a really good first week at daycamp! He was awarded a certificate, declaring he was the "Game King," due to his knack of winning every game he played. (He was particularly proud of slaughtering the counselors at checkers, LOL!) No major meltdowns, and he did very well most days. (Too bad his aide couldn't accompany Nathan to school next semester...)

The summer is looking up!

Don't Get Your Hopes Up

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.