The First Week

I don't want to get too excited, but the first week back went well. Gus's teacher reported that he was fine even if a little distracted by the afternoons. She gave him reading time at the end of the day, which helped. I'm happy to see that she's pretty adaptable, at least so far. We're going to target a few areas to work on with him: keeping his hands to himself and off of other people's things; keeping his internal dialog to himself are two that I'm thinking of. Hopefully we can work out some strategies that will help him self-regulate.

I've been reading a book called Positive Discipline, and while I'm still working my way through it, I do feel that the approach will leave a child feeling more empowered than the alternative discipline models. So far, I've seen better cooperation from MM and Gus has needed minimal redirection. They're both taking more responsibility in the house and are adhering to the new school-time routines. Maybe I can share what I'm learning with Gus's teacher for a better outcome than last year. By the end of the year, his self-worth seemed to have decreased (in my opinion), his anxiety had increased, and he ended up on medication. I am not interested in going that route again. If they can't meet his needs without making him feel down on himself, then perhaps it's time to give homeschooling a try. I don't know if I can do it, but I'd rather try than have my son feel unsuccessful because other people are frustrated from having to redirect him so much. That's what he's there for-his IEP even says so!

Anyway, I don't want to get into a rant. I'm going to stay positive as long as I can and hope for the best. How is the school year shaping up for you if you've got school-aged kids?

First Day Back!

Woo! We are so excited about the first day back to school, Gus was awake at 4:30! He's been asking questions:

What will I learn in second grade?
Will I learn Geography?
Will I learn English?
Will I learn Division?

We're all packed and ready for the school bus half an hour early. We've got lunch and noise-canceling earphones, as well as a note alerting the teacher just how early her eager student was up. Gosh, what most teachers wouldn't give for a student that jazzed about learning new things!

And it's an even bigger first day of school than usual because MM is starting Kindergarten today! She's just as excited about school as her brother is, and he's almost as excited for her as he is for himself.

With all the energy in the house this morning, is it any wonder I'm ready for a nap? Will update on how it all went tomorrow. For those with kids starting or starting back to school today, have a great one!

School Trips

Yesterday was the big school trip to Liberty Science Center. Wow, what a day! Gus was so excited I thought his head might start spinning a la Linda Blair. The car ride was long, long, long, but thanks to the meds, Gus fell asleep for a few minutes. The angst (amplified by the five-year-old mantra of, "Are we there yet?") didn't start until we unwisely decided to use my GPS to get ahead of the school bus because I had to find a bathroom ASAP. We survived, dry and in one piece and finally connected with the rest of the class.

LSC has four floors of hands on exploration, amazing exhibits, a huge IMAX theater and scheduled shows. And while it seemed that every school in the tri-state area was visiting, it was relatively uncrowded. I don't want to imagine what it would have been like otherwise.

We started on the first floor at the skyscraper exhibit. Gus promptly lost it. He wasn't misbehaving, rather he was so over-the-top excited, he was trying to pull me in every direction at once. Then he saw one of the interactive exhibits: kids strapped into harnesses and then allowed to walk across construction beams. I thought about letting him do it (he was about to rip my arm out of the socket trying to get up the stairs) but then I had a vision of him going out onto a beam and either a) freaking out when he realized the height or b) enjoying it so much he wouldn't come back. We left the skyscrapers.

The second floor had an exhibit of animals - one of Gus's favorite topics - called Eat and Be Eaten. He raced through the animals in their tanks, but was completely immersed with the presentation. He got to see a sponge, starfish, scorpion (which he wisely did not attempt to pet) and a giant cockroach (which, ugh, they did touch).

Another big hit was the Germ exhibit. A model of a human head randomly sneezed on the kids, and they of course were tickled senseless by this! I was pretty amused myself, just watching the glee at being splattered.

The best part of the day was the Science of Fear exhibit. That finally engaged him enough to calm him down. It was pretty darned cool. There were four booths set up, each to test different types of fear. The first had you stick your hand into a dark opening just below a tank with a snake and a sign that said Can you feel if an animal has climbed into the hole? Neither of us was that brave. Next to that was a big Jacob's Ladder of electrical current that asked you to stick your finger into a casing and allow yourself to get shocked. He declined and I took quite a while to get up the nerve. Then there was the Fear of Loud Noises. You sat in front of a video camera waiting, waiting and then BOOM! a sound like a shot came out of nowhere. Then the video replayed in slow motion to show you how you looked. Hilarious! He loved that. The best was last of course. The Fear of Falling where you get strapped to a table that tilts slowly back before suddenly dropping you to a cushion. Better than an amusement park ride. Gus took it like a champ, but more impressively, he waited on the long line with the patience of a Buddah. Score!

Just a word on how the Strattera fared...it didn't really. He was as hyper as he ever is in that type of situation and the car ride home was pretty nuts. Instead of crashing like we expected, he was totally revved up, even more so when we got home. I didn't expect that the medication would have done much.

All in all a fun day. He's asking if there's a Science of Fear exhibit closer to us. So I guess I'll stop writing and start looking.

Can't Tell If It's Working or Not

The higher dose of Strattera may or may not be working. It's hard to tell. Gus has been generally calmish except for little bouts of hyperactivity (in varying degrees of intensity) in the evenings. He's had decent days at school, but he's been crying a lot. Yesterday I asked him if something was bothering him and he said, "My head felt like a squished plantain." It seems like the medication may be helping a little in some areas, but overall, not a great difference. And the sensory issues still seem heightened. The impulse control, which is what we were hoping to help the most, is still not there. Yesterday, Gus decided it would be a good idea to hang from the curtains, and the curtain rod was pulled clean out of the wall. This was not the first time it's happened. Tonight my husband caught him chewing on the controller wires for his Gamecube - again seeking that oral sensory stimulation. He hasn't had problems with that in quite some time.

So I don't know that the medication is worth it, especially with comments like the one yesterday and some of the behaviors we're noticing.

Location Could Be Everything

I just had an interesting chat with the morning bus monitor. Gus has been able to get out of his car seat and has gotten up, but he only does it when the bus is stopped and they are waiting for the teachers to come out and get the kids. The impression from both bus monitors is that he's really smart and sweet and funny. He's not using any negative language or behavior during his hours with them. This is consistent with the way he generally behaves at home. He went through his phase of 'potty mouth' and occasionally gets nasty, but so does every other kid. Mostly, he's got a very laid-back, likable personality.

So the monitor made an observation about his ear-covering, which he's started doing these past couple of months. She felt that maybe he was just exposed to too much 'noise' during the day and is trying to block it out. By noise she meant corrections, instructions, demands, other kids...It's true that there are a lot more expectations on him than ever and being in a mainstream school building, visiting some mainstream classes (music) may be too much stimulation for him.

I can't argue that even though he wasn't getting as much in the realm of academics last year, he was certainly a happier kid and his staff was happier with him.

Unexpected and Curious

Today marks the fourth day of Gus's Strattera re-trial. Our first go at the medication ended after about six days because his behavior became wild on the afternoon of day six - to the point of endangering himself and the other people on the school bus. The doctor and I worried that increasing the dosage would make matters worse, but the results have been surprising.

Gus's behavior at home this weekend has been vastly different than what we heard from school. He's been very calm for the most part, sleepy even toward the afternoon. Yesterday there was one brief bout of grumpiness because he wanted to play a computer game and his sister wanted to watch TV, so he locked himself away in his room for a while. But there's been no name-calling or rudeness. As a matter of fact he was at a birthday party at a very crowded place and was just great. Around 5:30 he got a little burst of hyperactivity; last week it came a little earlier than normal - about 3ish.

One small issue he had last night was that he kept getting out of bed whereas he is usually the first to fall asleep. It was especially weird since he was completely exhausted from the day. But sometimes being too tired can effect the ability to fall asleep, so I won't panic over it.

Now, he'll be getting to that point where he started having serious problems early in the week. It seems that the increased dosage pushed back the bout of wildness enough that he hasn't had any bus trouble yet, but we'll see. If there's no major change for the worse on the bus, I'm willing to keep him at this level for a while longer and I'll probably even let teacher know by Tuesday or Wednesday, depending on when I speak to Doc. I'm sure she'll be pissed that I didn't tell her sooner, but scientific studies are often done blind for a good reason.

Maybe This Is Not the Right Place

With all the talk about Alex Barton, I'm thinking a lot lately about Gus's school experience. I try not to take things personally or to get too freaked out about the reports of what Gus is going 'wrong' during the day, but when it's every day, sometimes I have to wonder if he could possibly do anything right in the teachers' eyes.

Then there was the question of medication. They were pleased as punch when I finally agreed to try it. But I am getting a sense of annoyance because I took him off within the first week. The reports from the two days he was off the meds were good until I let the teacher know that he;d been off the meds. Then the story changed. All week, the reports have been negative, and I'm not saying his behavior hasn't been as reported, but I have to wonder if they are more negative because the teacher thinks he's off the medication. He's been back on the medication (unbeknownst to the school) and the reports have been the worst yet. I got a very terse note from the teacher today about how Gus was yelling at people today, throwing himself on the floor and being generally rude. Again, I don't dispute it - I saw how he got on the lower dosage of this medication. I just wonder if her annoyance would be as apparent if she knew that he was still on the same drug.

I'm also thinking that it may have been a mistake to take him out of his previous program for one more geared toward mainstreaming. Yes, he's getting more in the way of academics, but I think the staff in the other program was a bit more...understanding about certain behaviors. I could walk into his class last year at any given time and just feel the love toward my son. There is very little, if any toward him where he is now.

I understand how teachers can get burnt out and fed up with students. I taught for four years. I can understand it, but that doesn't mean I want a constant stream of 'you're not good enough' being hurled at him for another year.

Should I get the district to put him back in his old school? Will that give him and even worse message about his capabilities? I just want my kid to learn and be happy - is that too much to ask? He's in a special needs class for a reason - because he's got special needs. One of those needs is for understanding and compassion, not irritation on a daily basis. And I increasingly doubt that one of those needs can be met from a little brown bottle.

Gus often gets stuck on things - nothing new about that, but for the past few days, he's been stuck on something amusing. Armpits.

The other day, I was getting him ready for bed and he asked what was under my shirt (pointing under my arm). So I said, "my armpit."

"Can I feel it?"

"Er...okay." It was an odd request, but mostly harmless I figured.

"What's that?"

"Stubble. Go to bed." So much for being harmless, I thought at the time.

He's been quiet about it for a bit, but then this evening as he was drifting off to sleep, he asked again. I should point out that since he was a baby, the underside of his arms have been a soothing point for him. I told him that he had to go to sleep. He kept trying to get under my sleeve, but I was firm and he said his good nights.

Five minutes later, wouldn't you know it - he came downstairs and tried to stick his hand under my sleeve again! That little sneak! I had to stop myself from busting out laughing.

He's off tomorrow - I hope he forgets about this because I don't know if I'll be able to fend him off all day.

The Never-Ending Battle

Yesterday, Gus was presented with an award at school: the Principal's Award for Outstanding Effort (he also got Academic Achievement). I say presented because when his name was called, he bypassed the principal, grabbed the microphone and shouted to the entire school, "Hey! Is this thing on?"

I've been chastised by at least one friend who took exception to the fact that I made him apologize to the principal. She felt that it was normal kid behavior and that the school has unrealistic expectations of kids, particularly the ones with special needs, and that it was funny. A few people thought it was funny, and at a certain level it was.

It also provided a little more ammunition to the school to push for medication.

I'm starting to think I'm fighting a losing battle here. He has no impulse control, and the boy tries - his efforts are Herculean some days. He cried at least twice yesterday because he knew that he shouldn't have done it, but he'd already been having a rough time and he just could not hold it together.

Part of me wishes that they would just get off his back. In a sense, my friend has a point - kids do things like that. But at the same time, the inability to control his impulses can get him into some serious trouble, possibly even danger. For example, he has walked into people's houses (and I don't necessarily mean people that he knows well) - just saw the door opened through the screen and waltzed in. That's a dangerous thing for a kid his age, but imagine the consequence if her was, say fifteen, and did that. He could get arrested, that's IF the person didn't have a gun and decide to shoot first and ask questions later.

At any rate, the counselor jumped at the opportunity (I had requested to talk with her because I'm concerned about how his self-esteem is slipping because he can never seem to meet the high expectations, which may be unreasonably high) and she talked to me about trying meds. She suggested that we look into Strattera and doesn't feel that Ritalin works well for kids on the autism spectrum. I said I'd look into it. I mean, should I wait until they threaten to kick him out of school because they can't handle his behavior?

I haven't done extensive research on Strattera, but it seems that is not a stimulant (a plus) but has also been associated with liver problems and suicidal thoughts.

If anyone has experience with this or any other medications, your thoughts would be appreciated. This is a horribly difficult decision that I'd rather not make, but I don't think I will be able to dodge it much longer, not if I want to keep my child in public school.

So much going on

Gus just turned seven this week. And even beyond that lie has been...eventful. We went to the autism fair, and while I didn't learn much in the way of new information, I did see some of his old teachers/therapists and that was wonderful!

I have been gathering a great deal of information from other sources mostly about dietary changes, nutritional supplementation, yeast, yada yada. It's too much to go into until I can process it all, but I'm working on doing just that. Processing.

I've started experimenting with probiotics a little - just soy yogurt and now acidophilus. There's a panel that I will be attending tomorrow of therapists, DAN doctors and nutritionists regarding the biomedical take on autism. Apparently the buzz these days (at least in that field) is that autism, ADHD, asthma and allergies are all treatable and reversible with diet, supplementation and detox. I don't know how comfortable I am with some of the detox methods, but I feel like I have to at least be informed.

The other issue I find myself having is that I wonder where one draws the line between trying to help your child and trying to 'fix' your child. Where does acceptance come into play? How much unpleasantness do these children have to experience all in the name of making them 'better?'

Speaking of unpleasantness, I will be attempting to have Gus's bottom from teeth pulled on Monday. Hopefully, nitrous oxide will help keep him calm enough. The permanent teeth are fully in and growing into (toward the tongue) his mouth. If we wait too long, they may not come forward on their own. I am not looking forward to this, but it seems necessary.

We've tried a couple of karate classes in the past 2 weeks and Gus did better than expected. I don't know if we'll sign him up for the year - that will be determined after a few more classes. But he seems to like it.

So that's where we've been. Hope all is well with you & thanks for reading!

Checking in...

I am halfway through my novel writing insanity, but it is going well. So I thought I'd pop in and update.

I had a parent/teacher conference today and Gus is doing famously in his academics. He's above grade level in most things and this is wonderful to hear. The bad news is that because of his short attention span, he can't sit still long enough to get tasks done. Or at least without an awful lot of redirection. I think the school is hoping that I will put him on some sort of medication. I just wonder though, will that mean that he'll be pushed to mainstream and then lose the support that he has? If that's the case, I don't think I'd be too happy with that. But that's still a little ways off - we (hopefully) finish up with the genetics testing next week and then I'll schedule an appointment with the other doctor to see where we stand.

On a happier note, we've experimented with tin can phones this afternoon. They didn't work exactly like they were supposed to, but Gus was running his finger along the string and we did get to see the whole principle of sound vibration in action. Fun stuff!!

Tomorrow morning, I am back to writing. I am pleased to say that Gus (the fictional one, not my son) has a girlfriend - he decided it was time - and she's had a marvelous effect on him. :-D

Hope all is well with whoever is reading!!! I should be back in a couple of weeks!

Independence

It was gently suggested to me that I need to make Gus do more things for himself. I know that I should, but when I try to it usually ends up in frustration, annoyance and all-around negativity for both of us. So perhaps I'm a bad parent for taking the easy way out, but I'm trying to fix it. This is what it sounded like this morning as we were waiting for the school bus:

"Okay, now we have to put on socks and sneakers." I hand Gus his socks. "Put your socks on, please." He holds his socks and starts reading a book. I take the book and tell him he can have it when he's done getting ready.

"Put your socks on." He drops them on the stairs and goes for a sticker book.

"Put your socks on." He places a sticker in his sticker book. I take the sticker book and place it away from him on the table.

"Gus, please put your socks on, then you can have the book." He takes the sticker book back and ignores me.

I guide him back to the stairs and hand him the socks. "Put. Your. Socks. On." He picks up a sock and stares off into space. I greatly desire to slam my head into the wall several times.

This is a truncated version of what we went through for each article of clothing this morning. I can have him dressed and ready for school in 10 minutes. It took us about half an hour. I must have repeated myself at least fifty times.

I will try going back to the schedule posted, but with having him do more things on his own and having to break down each step, that will be a lot of little tags for he schedule board. The school aides readily admitted that it would take a lot of redirection (holy cow, what an understatement) but that he was capable of doing things for himself. I know he is and at six and a half, I should really be making him less dependent on me. The question is, am I capable of keeping my head from slamming through the wall every morning?

So soon??

I just got a very scary call from Gus's principal. There's space at one of the programs in a district school and he is a prime candidate for the program. In other words, they want to change his school, like right away.

I should be thrilled about this, right? It's a step closer to mainstreaming. Surely this is a good thing.

So why am I short of breath?

He's just getting used to his new teacher, now they want me to make him transition to a new school, new teacher, new aides, new bus, new bus route...I'm panicking for him! What if he regresses? What if he starts to run again? What if he doesn't like the kids? What if the regular ed kids are mean to him? What if what if what if???

And I have to decide right away before he gets too comfortable where he is.

I think this would be a good day for medication. First 9/11 anniversary, then trip to the vet, then this. What else today?

Edit:
I was able to get over to the new school today to meet the social worker and the teacher. I know this will be a good move for Gus. He'll have opportunities for mainstreaming little by little that he would miss at his current school. Other than that the programs are almost identical. And he is currently the highest functioning kid in his class, with a first year teacher. In the new school, he'd be more among peers on the same level, socially, as he is and with a teacher who has loads (ten years) of experience in this program. The only down side is the transition, but I think he's got the tools now to be able to cope with that.

So I'll take him back to the new school on Friday to see how he likes it and how he fits in. That will be interesting as I'm having major dental surgery tomorrow. I'll probably scare the poor kids silly. Wish me luck at any rate.

School, TEAACH and ABA

I just received the packet from Gus's school for September. apparently he's getting a new teacher. I can't help but to feel slightly disappointed - his teacher last year was amazing. I'm sure it will be fine, but ever since his first school experience, which was an awful one, I'm always nervous about changes. Yes, I need to get over it - most kids get a new teacher each year. All I can say is I'm working on it.

When Gus started Early Intervention at two and a half, he got into one of the most sought after programs in our county at the time. They used the TEAACH (Training and Education of Autistic and Related Communication Handicapped Children) method, which I found to be preferable to ABA. (Applied Behavioral Analysis.) I was dead set against ABA because of awful stories I'd heard about it: children being physically forced to sit in chairs, children being tormented with the very substances that they had aversions to...the stories made my skin crawl. So I tried the TEAACH school; they were supposed to have loads of experience in dealing my son's particular needs, especially since he was very high functioning.

It was a miserable eight months. The method was not the problem, but the school was. The teacher (in her first job, first year) could not manage the different issues and needs of her class of ten. So they got the teacher some support. Since she was having such trouble just getting through the day, communication was often sacrificed, so I often didn't know what was going on during the day unless Gus had trouble, then I would get a note. There were enough notes for me to become concerned, and I started popping into school (which was permitted by this particular school) unannounced, with my infant in tow. On many occasions, I would observe Gus through the window of the classroom door crying or having some kind of meltdown. He had no idea I was there, so they couldn't say that I was setting him off.

I can't tell you how many times the teacher, or later one particular administrator, would say things like, "I don't know what's wrong with him," or "Why is he doing this?" Are you kidding me? I would think, "You're supposed to be the experts!"

It upset me most because I could easily see what was making him tantrum. Gus can't handle other people, especially children who tend to be very high pitched, crying. There was a little boy in the class who made Gus look positively lethargic by comparison, and would often have his own tantrums. When the little boy started to lose it, Gus would lose it shortly afterwards. Another behavior that seemed to upset the school a great deal was that Gus tends to moan or hum when he eats. It's just something he does - who cares? Do I worry that some kid is going to harass him for it when he's older? Yes. But quite frankly, it's not something that keeps me up at night; there are much more important things for me to worry about - like the fact that Gus used to (and occasionally still does) wander off. Yeah, the school lost him one day. And the best part is, they didn't tell me until about a month later. He wasn't at the school much longer after I learned that little tidbit. He wandered into another classroom, and his teacher didn't even notice.

New teachers scare me. They don't know Gus, and sometimes that can be a danger. I won't worry too much right now because I'm fairly certain that at least one of his old aides will still be around and they know him well enough.

Incidentally, after the school from hell, Gus was given an at-home speech teacher from an ABA program. I only agreed to try her approach because I'd met her and liked her very much. She accomplished within a week what the school hadn't managed in months. Her first concern was the safety issue, so she worked with him on staying with us when we were outside and not running off. A second teacher was brought in also, and that summer we saw some lovely progress in Gus's staying with us, in his play skills and in his communication. They were incredibly supportive, and they loved him. And the ABA method was working - no horror stories here. We were even able to start working on potty training. By the end of the summer, we got Gus into the home-therapist's school and he spent two very happy years there.

Ironically, the TEAACH method is the basis for his current school program, and Gus does beautifully with it. He thrives when he's got a schedule and knows what's coming next, he focuses much better when he's got a small visual space to concern himself with (his 'office') and he gets just the amount of social interaction that he can manage. Last year he did performances onstage, and was able to go on three field trips - one of which I did not have to go on, and he didn't wander for a second (but I'll admit, I was a wreck during the one I didn't attend). I think one of the most important factors, more important than the method being used in a school or by a therapist, is the staff implementing that method. I think many of the different approaches have their benefits, but without a caring teacher who truly respects the individuality and specialness of the student, they can also be pointless. That goes for any kid, really, even the ones who aren't on the spectrum. I'm crossing my fingers that we get lucky again this year.