Bottles and Books

Wednesday had not been good. I forgot to send a new water bottle with Nathan to school (he threw his the day before, and it was nowhere to be found). Apparently Nathan fixated on the fact that his bottle was missing, and was extremely frustrated by it. (He likes to make a sugar-free lemonade or punch with a powder that I give him to pour into the bottle.) He was on the verge of a melt all day long, and kept telling the staff that they couldn’t make him do what was expected of him.

Great.

I emailed the teacher back, and tried to explain that his obssession with the water bottle concerned me, because it sounded to me like he was very stressed. The water bottle should not have caused that kind of fixation. We have water and drink mixes all the time, and we run out from time to time, but he has never reacted like that before. That tells me that something else was going on, and the water bottle was not really the issue, but just a symptom of the real problem.

I tried to tell her that when he has a meltdown, it is rarely the preceeding incident that was truly the cause of the melt. Usually, whatever sets off the meltdown is really just “the straw that broke the camel’s back.” He might have had ten things happen to him that day, that all upset him, but none was enough to send him over the edge. But then the water bottle was missing and boom, he melts down. It wasn’t one thing, it was many things. Having him fixate on the bottle would be a sign to me that something is very wrong, a red flag, as was his rude backtalk about not being able to get him to do what he was supposed to do. Nathan is NOT a rude child. He is one of the most polite kids you could ever meet. When he is rude, there is DEFINATELY something else going on. Red flags should have been waving all over the place. Instead, they just got angry that he was being defiant.

I tried to explain about the straw that broke the camel’s back in the email, but the teacher wrote me back and said no, that they had determined that the water bottle is really what he is upset about.

With that kind of open-mindedness, I can see why they have meltdown after meltdown.

They have their own idea of what is going on with Nathan, and I don’t know what I’m talking about. Hell, I’ve only lived with him, and his precise version of autism and sensory modulation disorder, for over nine years. Why would I know anything about this?

Somehow they managed to avoid a full blown meltdown, by talking to him, giving him breaks, and allowing monitored cooling down times. Thank goodness.

(If the whole thing had simply been an issue of a missing water bottle, why didn’t they just give him a cup to make his lemonade, and solve the problem?)

They told me that Nathan wouldn’t bring home a book he needed for homework. I asked if we should have a copy of his books at home. They said he needs to learn to take home what is necessary for his schoolwork. Okay.

I later found out that Nathan wasn’t trying to be naughty when he wouldn’t take the book. He felt that he didn’t need to book to do the work. They had read the book in class, and he thought he knew the material well enough to answer the questions without it. He did the work he needed to do, without the book, answering the questions from memory. I thought he missed an assignment, but he didn’t at all! He just made them mad because he didn’t think he needed it. (If they gave him an assignment to do some very simple addition, and then suggested he take a calculator home to do it, he would have refused to take the calculator too. Why is this a bad thing?)

Then came Thursday.

Meltdown number nine, Restraint number six.

Nathan got to school on Thursday, and discovered that his para (his one-on-one aide) was out sick for the day. He had a substitute para. Recipe for disaster.

I received a phone call from the school nurse. The principal was not in, so they took him to the nurse’s office. She called me, and I asked her to put Nathan on the phone. At the time, I could hear him growling and screaming in the background, and crashes, like he was throwing things. Hoo boy. If I didn’t hear it for myself, I may never have believed it. He NEVER gets like this at home.

Once I got Nathan on the phone, I tried to talk to him. I didn’t even know if he could hear me or not, or if he had thrown the phone, but I kept talking anyway. Finally I got him to answer me. He could only give yes or no answers at first. I kept telling him I needed him to calm down and relax, and I asked him to take deep breaths. To my surprise, he actually did! I could hear the deep breaths. I quickly realized I needed to tell him to exhale too, since he seemed to be breathing in, but I couldn’t hear breathing out! But he did it, and quickly de-escalated. The only real sentence I got out of him was when he told me his para was absent. The nurse got on the phone again and told me she would give him about 5 minutes and then take him back to class. She also said she would have him apologize to her for hitting her. (yikes). I asked her to put him on the phone again, and told him to apologize. When she took the phone back again, I tried to tell her that I hoped the day would improve, but she hung up on me.

When dh went to pick Nathan up from daycare, they told him he had been upset there, too, but they handled it just fine. They have been doing SO well with him.

So then we come to Friday.

Nathan woke up happy, and ready to do schoolwork. I normally would see this as a good sign, but this is pretty much how he has gotten up all week, and that was certainly no promise of a good day.

I was extremely sick with some kind of stomach virus (or food poisoning?), and could not make it to work. I hoped to pick him up from school in the afternoon, if my rebellious tummy would cooperate.

I was so worried about him all day. This had been such a rough week, and I didn’t think any of us could take much more. I went to school early, planning to observe if he was doing okay.

When I got to the school, I was buzzed into the principal’s office. There, they told me that Nathan had a “FABULOUS DAY!” whooooohooooo!!!!

After getting the okay to go to his class to check on him, I slipped quietly into the back of the room and sat down on the counter across the back.

The para came up and told me that Nathan had been having a really good day. His teacher did the same. Nathan was sitting nicely, working well, and grinning from ear to ear when he realized I was there. The case manager saw me, when she was walking down the hall, and called me into her office. There she showed me a neat little book the Autism Team had created for Nathan. It was a social story, based on the “wellness chart” I created for him. (This was a chart that showed how he progressed from happy to meltdown, and what he could do to calm himself along the way.) It was basically the same information, but it was elaborated on, and put into book form. She offered to get me a copy, and I was delighted.

I had barely returned to his class when the Speech Therapist called me into the hallway. This woman is really wonderful with Nathan. She not only told me what a great day he was having, she also told me that she has seen Nathan make some significant progress lately! She said he was taking an interest in his schoolmates, and asking questions to learn more about them! How cool is THAT! She has helped him so much with his social skills. And she always makes a point of telling me something positive about Nathan. God bless that woman.

It was at that point I talked to the para, who was explaining how they were sending home some work that he missed during the week due to his meltdowns. I inquired about that book he refused to bring home, and asked what the reading assignment was that he missed. That’s when she told me that it wasn’t a reading assignment, it was just supposed to help him answer the questions on the handout. She went on to tell me that he must not have needed the book, because he told her he could answer the questions without it. I would have been really irritated by this, since they led me to believe he had refused to do his work, not that he refused to bring home a book that he didn’t really need, but I was feeling too happy about his good day to let anything bug me.

No school for four days! YAHOO!

• Location:Happily at Home
• Mood:jubilant
• Music:Paul Simon, Kodachrome

A Matter Of Discipline

Two meltdowns today. Two more instances of restraint. So far this semester, eight meltdowns, five restraints.

Nathan couldn’t tell me what had happened. He had gone blank. According to the teacher and the principal, when they asked him to do work, he flipped out.

I was asked about his medication, if we’ve made any changes. I hadn’t. I informed them that the doctors know all about what’s going on at school, and they don’t want to change anything at this time. I go back in a couple weeks for a follow up.

I was informed that the school doesn’t believe he has sensory issues. They told me that he was outside, and they monitored him, without him knowing that they were watching. Some kids touched him when they were playing soccer or something, and Nathan was fine with it. So they don’t believe he has sensory issues. (I guess the diagnosis of Sensory Modulation Disorder must be wrong then.) I opened my mouth to protest, and they rephrased it. They said they don’t believe the problems he’s having at school have anything to do with sensory issues or autism. (Does that mean they don’t believe he has autism either? Interesting, considering they were the ones who first diagnosed him. Doctors have backed up this diagnosis, too. I guess they must be wrong as well.) Oh no, he MAY have autism, but this isn’t what’s the problem. Hm, do tell.

They believe Nathan is manipulating them. They also believe that the big problem is that his homelife is not structured, and school is. I again was about to protest when they tried to backpedal, and soften it, saying home is not AS structured as school, in the same way that home is not as structured as work. Oh yes, that is so much better. According to them, Nathan can’t transition to school on Mondays because he can’t switch from the unstructured and undisciplined home life to this rigid, structured school with high expectations.

I figured my voice was not going to be heard, and I just shut up. How do you explain to someone who has never lived with autism? How do you discuss structure with someone who has no clue what structure really means? Do you really think our household (let alone our sanity) could function without structure?

And this is when they brought up discipline. Heh heh. Yeah. Of course, all of Nathan’s problems stem from the fact that we don’t have the necessary discipline. (Translation: Nathan is just a spoiled rotten brat and just needs a good swift kick in the pants.)

“What Nathan needs…,” (my favorite three words out of the mouth of a stranger), “is to have consequences for his actions.”

I informed the teacher and the principal that Nathan’s actions do indeed have consequences. He has had television and his video games taken away, and has to earn them back. We did that after his last major meltdown. (You can see, after two more meltdowns and two more restraints just how effective this is with him, but I digress. )

So after I’ve informed them that his actions do have consequences, I tell them that I don’t know what else to do, to improve this situation at school, and to avoid meltdowns. They keep looking at me to fix this situation. I don’t have these problems with him, so I don’t know how to resolve this. I ask if they have any suggestions. Ah, yes they do. They tell me that “consistency is the key,” and that I must stick to the punishment.

I guess I come across as a real pushover, huh?

(Ironically, they later told me that they don’t want me to completely eliminate ALL tv, because after all, there are some good educational programs on tv. So much for consistency, eh?)

I asked if the Autism Team gave them any suggestions. They told me they are doing everything the Autism Team suggested. (I wonder why I haven’t been shown the report from the Autism Team? I still have no idea what the Autism Team told them.)

I was at the school for about two hours. They insisted that I stick around and observe him while he is in class. I’m not sure if that was because they were afraid he would melt down again? (Not with me there!) Or maybe they hoped with me there that he would participate…? I don’t know what they wanted from that. But after two hours, all they could tell me is that they want me to discipline him, and to do so consistently.

They complained to me that Nathan is capable of doing the work. That he can and will crack down and throw himself into his studies. They think WE are shortchanging him by cutting down the amount of classwork he is given, and on the amount of homework he is expected to do. Hey, now wait a minute! I wanted a reasonable limit put on his homework, yes. I did NOT ask them to cut his homework in half. That was their idea. I got angry when they sent home 36 to 40 hours of homework a week! That’s a little different! I wanted a reasonable limit, period. The Autism Team recommended reducing his homework to less than the other kids. I just didn’t want to spend 40 hours a week at my job, then come home and spend 40 hours a week doing homework with my son! He couldn’t handle it, and neither could I. I don’t think that was unreasonable. Now they send home a worksheet, and tell him to do the even-numbered problems. I didn’t request that, they did.

Again I got a lecture about how he needs to learn coping skills, and not freak out every time there is some kind of change in his life. You know, if it were that easy, they wouldn’t call this a disability! They pointed out to me that he is halfway to becoming an adult, and needs to learn coping skills to function in this world. He has to learn to accept change and deal with transitions.

I’m so tired of all this. I’m tired of people throwing the blame on me because they don’t know how to work with or motivate my son. I’m tired of being told he’s not disciplined enough, when they have never even asked me about our discipline. I’m tired of them telling me his home life is not structured enough, when they have never inquired as to the structure in his life. I’m tired of them telling me he doesn’t want to learn, when he enjoys learning with me. I’m tired of them butting into his medical issues, as if they are qualified to make judgment calls in this area. And I’m tired of them telling me he doesn’t have sensory issues, or that he isn’t autistic. Just because he looks NT, doesn’t mean he is NT.

I’ve thought about trying another school. But what difference would that make? He’s had different teachers, different principals, different paras. It all comes down to the same thing. Why should changing schools change anything? The only thing I know that has made a difference for him is when I quit my job and stayed home. I don’t know why, but he did better in school then. I would do it again, but financially this is out of the question. We simply can’t afford to live on one salary.

I don’t know what to do. Nathan apparently turns into a completely different person at school. And I’m supposed to be able to resolve the issue, even though I’ve never seen this side of him. And it’s all my fault because I lack the necessary discipline, and my life must not be structured.

Did you ever feel like you’re the salt in the sugar bowl?

• Mood:ineffectual
• Music:Eric Clapton, Before You Accuse Me

Chest Pains Again

I got a call from the school’s social worker. She informed me that Nathan had been in the office, and that he was complaining of pain, right in the center of his chest. I assured her that this has happened before, and that he was treated for reflux, and that we’ve been instructed to use Children’s Maalox as needed for this. Because we haven’t had any occurences in weeks, I didn’t think to send Maalox to school. I suggested giving him a Tums.

Then she asked me what meds he was on, what doctor I was taking him to, where the doctor was located…

Geez. I wish these people would just lay off playing doctor. I just told her that everything was kind of “up in the air” right now, that we were taking him to a doctor, and this doctor was evaluating the situation and what he wanted to do about meds. I didn’t want to go into any details. I don’t understand why they need or want all these details.

Why do they feel qualified to give input about medications? Are they trying to exert more power? Don’t they think I’m trying to help my son? Do they get the impression that I’m a parent who doesn’t give a hoot? Do they think I don’t care about what goes on at school? Do they think I’m clueless? Do they feel that they know better than I do, what is best for my son?

• Mood:defensive

• Music:Harry Nilsson, Put the Lime in the Coconut

Week One

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?

Mood:uncomfortable

Music:Bob Dylan, Rainy Day Women 12 & 35