Well, it's been an exhausting week.
Day 1. Monday was the first day of school. It was only for about 2-1/2 hours. Nathan rode the bus for the first time in nearly a year. I created a business card for him, to give to the bus driver. It said his name, and under that it said "I have autism." Then it listed things like "Loud noises bother me. I have ear plugs to help." "I am hypersensitive to touch. Please don't touch me." I also asked for advance notice if there are any changes, such as a change of seating arrangements, and asked for a note to be sent home. It ended with "your patience and understanding are appreciated." Then I put "Mom's Cell" phone number up in the corner, just in case.
Nathan got such a kick out of this card! He was happy to be able to give it to the bus driver. Dh saw it, and he thought it was neat, and asked for a copy to put in his wallet. So then I created a similar card that wasn't quite so specific for riding a bus.
The bus ride went well all week, as did the wait on the bus stop (a place of prior problems and worries).
Then I got my first call from the school. It was the physcial therapist, telling me she must have my signature on the medical release form. She said she needed it to get a prescription for evaluation and therapy. I told her I got a prescription already, and sent it to her office. She said I still have to sign it. It's state law. (What?!) I told her my doctors told me not to sign it. She said that it has to be signed, because it gives her permission to talk to Nathan's doctors about his therapy. Then she tells me they rarely, if ever, have to do that! So why am I required to sign it? She told me she can't work with my son until I do. Oh great.
Day 2. I emailed the Supervisor of Special Ed that worked with us last year. I loved this guy. As soon as he got involved last year, things really improved for my son. I was heartbroken when he wrote back and broke the news that he is no longer the Supervisor of Special Ed for my son's school. He forwarded my email to the new Supervisor, and to the director of therapy.
Nathan had a great day a school.
Day 3. We started a new med. A couple hours later, dh had called me, telling me he heard from the principal, and Nathan had had a meltdown. I quickly called the doc. No sooner had I gotten off the phone, when the principal called me.
She asked if anything was different, since Nathan had such a good couple of days, and now blew up. I told her he was on a new med. I told her I had already called the doctor's office to inform him of the meltdown. She asked what kind of med he was on. My red flags all went up. I'm sitting there thinking that Nathan can't be in school for more than a day and a half, without someone asking what meds he was on. I told her that I couldn't remember the name of the drug because it was new, and I had never heard it before, but I assured her that I had a call into the doctor's office, and I have informed them of what was happening, and that he was supposed to call me back. The principal said she would call me back later in the day, to let me know how Nathan was doing.
The principal called back after lunch, and told me that Nathan had settled down, but then he started getting fussy again later in the day. She then asked if I had talked to the doctor yet, and what he said. I explained that I hadn't heard back from him yet. She expressed concern that Nathan's med had been at fault for his meltdown. We talked about the incident, and I started to ask more specific questions about what happened, and how it was handled. She said something about how they put him in a chair, and kept him there for a while. Those figurative red flags were back again, only this time they were beating me over the head. I came right out and asked, "Was he restrained?" Yes, he was. But only in the chair, not with his arms crossed or anything. My heart hit the floor. The first week back at school, and already he was restrained.
Nathan had been working with the para, and she gave him a worksheet of ten questions that he was to answer. Nathan balked. He didn't want to answer them. So she suggested that he only answer three, and gave him a marker to mark which three he was to answer. (At the IEP meetings, we had warned them not to give Nathan the choice because he gets confused and frustrated. They were supposed to white out the questions or problems that he didn't have to work on, BEFORE they gave it to him.) Nathan got upset, and took the marker and marked all over the page, then all over the desk, then marked up the para, including her clothes. Sheesh, this was a new one. So they pulled him out of class, holding one of his arms, and with an arm around his back, and scooted him out to the hallway. In the hallway he became violent, taking punches at the teacher, para and principal. He was then brought to the principal's office, where he was placed in a chair. They held him in the chair until he settled down. (By the way, Nathan tells me at this point he managed to get out of the chair, so they restrained him again, this time with his arms crossed in front of his chest, with the para behind him holding his wrists. The principal did not tell me this, but Nathan couldn't remember if she was still in the room at that point.) He was released after he settled down, and he then curled up on the principal's floor and acted like he was going to sleep, so they let him stay there. (Nathan is unable to sleep in daylight, always has been, so I know it wasn't that he was going to sleep, but I didn't bother to challenge that observation.) They then allowed him to go with the Speech Therapist, who is good with him, rather than to go back to his class which was in the middle of art class. He doesn't like to come back in the middle of something and feel like he has to catch up. He returned to class after art.
The principal then did something that shocked me. She asked me, if I didn't mind her asking, why I would change his medication at this time, when he had been doing so well the first couple days? I replied that I didn't change his medication, I added it, because he always had such difficulty in school. He does fine with us, but he responds to school very differently then he does to home. He hadn't been on meds all summer. She encouraged me to discuss this with Nathan's doctor, and said that she wasn't qualified to give a medical opinion in this, but she hoped I would discuss with his doctor the possiblity that maybe Nathan would be better off without meds, especially since he had done so well the first couple days, and then did so poorly when we put him on them.
My jaw hit the floor. Did I just hear this correctly? Was someone from the school actually suggesting that we allow Nathan to attend school WITHOUT MEDS???? I thanked her for sharing her concerns, and told her I appreciated her input, and I would most certainly discuss this with his doctor.
Then I got yet another call from the school. This time it was the physical therapist again. She asked where it stood with the release form for therapy. I told her my doctors all recommended that I don't sign it, and I had contacted the old Supervisor of Special Ed regaring this, and that I was now aware that the old supervisor had been replaced, and that he was forwarding all of my information to the new supervisor, as well as the supervisor of OT. She said, "I don't know if you are aware of this, but I don't work for the school. I'm contracted out." What?!? No, I didn't know that. She explained that the school contracts out for therapy, and that the form she wants me to sign is not a school form, but a form from her company. Oh terrific. She gave me the name and number of her boss, and suggested that I talk to her.
It turns out that her boss is one of the people that the old supervisor had forwarded information to, so she is aware of the situation.
I came home to find an email from the case manager, asking if I can come in and meet with her to discuss Nathan's summer. Hm. This doesn't feel like a good thing. Especially when the email comes the day he had a meltdown. However, he did bring home a social story that she made, along with the Speech Therapist, and it was very cute. It used pictures of Nathan standing in front of the school, the new classroom, pictures of his teachers, etc. It was nicely made, too, with a spiral binding. Nathan got a HUGE kick out of it, and we've gone over it several times. Even though he is familiar with all the facts, it is comforting to him to go over this stuff.
At this point, I don't know what to do. Dh and I discussed the meds, and while it is so tempting to jump on the principal's suggestion to forgo all medication, we are also painfully aware of how difficult it is for Nathan at school. We decide to go with whatever the doctor suggests at this point, but it is nice, for once, to have the principal behind us if we decide to go without. My hope for the school year jumped up a big notch.
Day 4. (Yeah, this has only been four days.) While at lunch, a co-worker runs out to me in the lunchroom and tells me that Nathan's teacher called while I was out getting my food. My heart hits the floor. I called the teacher, anticipating more bad news. She suprises me with good news! An excellent day!! No problems, Nathan was happy and cheerful all day, and participated in class! YIPPEE!!
Day 5. Another excellent day!! Dh and I have been making a big deal out of his good behavior. The teacher volunteered to call either dh or I and tell us what kind of day Nathan had, for a week. Great! They do give him a small reward at the end of the day if he has had a good day. It's usually something small, like being able to read in another room for a few minutes, or a few minutes of precious computer time, or something like that. For some reason, Nathan spotted a candybar that his teacher had, and obsessed about it all day. He couldn't get it off his mind and kept talking about it. After he had such a good day, they allowed him the choice of eating the candybar as one of his reward choices, and he was tickled pink. The teacher asked him why he had obsessed about the candy all day, and Nathan told her it was because he never got candy at home. LOL!! We have candy at home, and he has free access to it, but he rarely eats it because he usually goes for apples or bread over candy. It's not like I restrict him. The poor teacher feared she had done something wrong by giving him candy, if his parents never give it to him. I assured her that she could give him anything she wanted (though he will NOT drink pop, never has). Maybe I'll send her a bag of candybars or something to use as rewards. She also shared some other funny stories, that gave me the impression she is enjoying have him as a student, and isn't ruffled by the challenges that have already presented themselves.
The teacher is really working on building Nathan's trust, and has already discovered things that have made a difference. Things that no other teacher has ever bothered to notice. I'm impressed! I'm also impressed with the effort she is putting forth. My hope for the school year has jumped up another big notch.
I'm hoping if we can continue the good days, and have a good solid week behind us, that this would be enormously helpful to Nathan. If he can see that things will be nice, and that he can handle it, then as his academics become more difficult he should be able to roll with it. He's very bright, and picks things up easily. The academics have never been the problem. Just the way the school deals with him. But if that is improving, I hope that he will feel more comfortable, and be more successful.
So that's our first week of school. Can I go crawl under a rock for the next nine months or so until it's all over?
