Friday, October 10, 2008

Too Funny to Pass Up

Gus has been home sick for the majority of this week, and this morning he had a low grade fever, so I'm taking him to the doctor. He's really sluggish and not doing what he needs to do. So while he was sitting down to eat breakfast, his mind was sort of wandering and this conversation came up between him and his sister...

Gus: I think I'm gonna be seasick...Why would anyone get sick of C's? Too many C's...

MM: No, you mean seasick. When you get sick in a boat. You get Na-chis.

Gus: What??

MM: Nachis! Nachis!

Gus: Nachos? (Giggling)

MM: No! Nachis...when you feel sick!

Gus: You mean nauseous.

MM: What's naw-shus?

Gus: When you feel like you have to throw up.

They then (how I don't know) got into a discussion of garbage.

A bit of Friday morning silliness to ward off the lingering effects of a week-long sickness (but not seasickness because we are actually running low on C's at the moment).

Have a great weekend.

Tuesday, September 9, 2008

Homework fun

"Six minus one?"


"Six minus one?"


Repeat ten times.

"I'm going to say it until you get tired of hearing it and give me the answer."

Sigh. "Five!"

"Great! Three minus three?"

Silence. Yeah, wise guy, gotcha now! He smirks, knowing he's caught.

"Uh...three." We both laugh and he gives me the right answer.

Earlier in the homework adventures...

"Okay, write your name and try to keep your letters on the line." Of course the letters start to float above the line, a weak escape attempt. "Oh no! Where are those letters going? They're flying away!" Giggles. We erase, try again, and get the first name on the line. Soon, the letters of the last name start to drift up. "Hey! Those letters are flying without a license! Get them down from there!"

Gus draws a little circle next to the last letter. "That's their ticket!"

This is going to be a fun year.

Saturday, September 6, 2008

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?

Wednesday, September 3, 2008

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!

Tuesday, August 19, 2008

Not Crazy, Different

Yesterday we were out playing with the one other boy Gus's age in the neighborhood. They don't play together often because they're about as different as a bull and a butterfly. He's an okay kid, but a little 'type-A' while Gus is...Gus. So, all three kids were climbing a tree, and the boy quietly asked Gus, "Why are you so crazy?" Then he turned to MM and said, "Why's your brother so crazy? Why's he so silly? He's always talking about silly things."

I took many deep breaths. He wasn't trying to be mean, but in light of Gus's proclamation the other night about being odd, it broke my heart a little.

Gus didn't answer, but I could tell he heard and was thinking about it. I said to the boy, "He's not crazy, he's different. He thinks about things differently than you."

"But why does he talk about silly things?"

"Are you silly sometimes?"

"Yeah," he said with a sheepish smile.

"Well, so is he and so am I and everyone else, too."

That seemed good enough, but I had to get out of there. I took the kids for a walk, and then home for a chat, some reassurances, some ideas about how to handle questions like that. Don't know if I handled the situation correctly, but it was the best I could come up with. I guess we weren't going to stay in this polite little bubble forever.

Monday, August 11, 2008

Six Miles on a Bike?

Gus has been doing really well on his bike since taking off the training wheels. He's gotten better at starting himself off and isn't crashing into things to stop himself as much. So my husband and I have talked about maybe joining a local cycling club and possibly joining them for a family ride in September.

The ride would be six miles along a trail, no traffic. Since it is family-centered, I doubt it will be very hilly. I'm pretty sure that Gus could handle it. I remember a few years ago when he was around three, we did an autism walk that was two miles. He ran the last quarter mile and then went on to spend the rest of the afternoon in a bouncy castle. I think he's got the energy and stamina to go six miles on a bike.

My one concern would be the other riders. He's not always mindful of his surroundings and has difficulty navigating others' personal space (part of the sensory difficulties), but I think I may have a strategy brewing. If the four of us ride, if we ride behind the kids with them single file, each of use can flank each of them. I'll have to contact the organization and ask some questions about the expected number of participants and so forth, but if he was able to do a walk among thousands of people at three, I'm confident that he can handle this. And I think he'd enjoy it in addition to it providing him with something to feel good about.

He needs something to feel good about, especially now when it seems he's starting to notice his differences. I was reading Gus a story the other night and the phrase 'odd man out' was mentioned. He asked me what odd meant. I was a little apprehensive about the question, but I answered, explaining that it could have to do with numbers that didn't divide evenly or it could mean different or unusual.

His response: "I'm odd."

I replied that everyone is different and that he was awesome. He wasn't exactly upset, just a sort of resigned. But he went to sleep and was fine the next morning. So I think now would be a great time for him to feel capable and successful. Maybe a bike ride will go a little way toward that end.

Saturday, August 2, 2008

He sure told me

Burgers and mashed potatoes for dinner, one of his favorites. A little too favorite on this night.

"Please stop putting the potatoes on your back."

A look of pure pity and disdain. Gosh, mom, how can you be so dumb? "This is not the future of fashion!" Jeez, woman, what are you thinking?

Clearly, I am not smart enough to realize that potatoes are not clothing, but merely a natural skin cream. Silly me.

P.S. Gus's cycling success motivated his sister to jump on the bandwagon. We are now a training-wheel-free zone! Yippee!

Thursday, July 31, 2008

How Amazing is This Boy?

Tonight, Gus was a little amped up, so I told him we'd go out for a little bike ride after dinner, which we almost never do. On a whim, I told him to try out his sister's old bike - the one without the training wheels. Three tries, and I swear he was riding, all on his own! He's a natural! I'm amazed and so very proud! He's got me beat by two years - I didn't ride a two-wheeler until I was nine.

Once he got the hang of riding the little bike, I took the trainers off his bike and went riding around the block. He's still got to get the hang of starting off, but that'll come quickly, I'm sure.

This is the site where I got the 'instructions' for teaching a kid to ride, which I learned about from a discussion at AutismVox.

On our way home, Gus took a bad spill. He forgot to turn and went over the curb and landed in some grass. He was completely fine - he's got amazing reflexes when it comes to falling - but the bike handlebars somehow twisted all the way forward. So when my husband and I - brilliant as we are - tried to fix them...

It's a very simple concept: lefty-loosey; righty-tighty. Someone forgot to mention that you have to be facing the thing you're trying to loosen to the lefty, not the top, because then you're turning righty and the nut is becoming tighty. It only took us an hour to figure out why it was getting harder to turn the nut despite the blasts of WD40. Good thing our kids are smarter than us.

So Gus's bike is all fixed and ready to go! Yay, Gus!!

Sunday, July 27, 2008

Good People

It occurs to me now and then that while there have been a number of people - children and adults - who have been less than kind to Gus, there have been so many who have been really wonderful. We're very fortunate to live among some great neighbors.

Yesterday at the beach, one woman was there with her daughter and two nephews. Gus and MM had played with the little girl once before - they're all Pokemon enthusiasts. The nephews were much older, but played with the kids and were so patient with Gus, I actually went and chatted with the woman to tell her what nice boys they were. Then there's the family down the street with the two teens and two little ones. The older ones are really amazing with all the smaller kids in the neighborhood, but I don't think they know how much it means that they show Gus such patience and never exclude him from games.

We're surrounded by parents of children who show their kids by example that Gus is not "weird" as he's been called (not too long ago), but just different and totally acceptable.

They may not all understand the intricacies of autism or Asperger's (only one person does, actually) but our neighbors are good people. We're lucky to have found them.

Friday, July 18, 2008

Some Possible Answers

Since taking Gus off his medication, I've looked for some alternative ways to help him focus during the school day. He's had a great week, only one less focused afternoon. That's pretty darned good! The weather is a big factor; he's just naturally more hyper and has a harder time during the colder months. But it's looking like physical activity and noise have been playing a big role as well.

It seems that when Gus has lots of physical activity on a daily basis, he's more focused in school. This is not surprising. Exercise increases serotonin, dopamine, norepinephrine and endorphins. The neurotransmitters control alertness, emotions, and concentration, while endorphins are natural mood lifters. So, I've made it a point to make Gus exercise for about 10 minutes every morning with a peddler - an exercise bike without the seat part - spending 5 minutes working his legs and 5 minutes working his arms. After school, he's been either swimming at the beach or walking or something else to get him out and moving. I think that if I can work something out with his teacher in the fall where he has a break midday to do some exercises, everyone may have a happier school year.

The other change we've made is that Gus now uses headphones in the classroom. It seems that when he doesn't have to be anxious about noise, he can concentrate better on his work.

So I'm feeling optimistic about the possibility of a drug free school year to come. Now I just have to find an exercise regime that we can afford and that will be interesting enough for him to want to do it every day.

Thursday, July 10, 2008

Wonderfully Imperfect

Gus has been off Strattera for a few days now. I will admit, he's a little less focused and a little more hyperactive. I find myself having to tell him to do something ten times instead of eight. And ya know what? I'm so happy!

The Strattera seemed to suppress something essential in him. He became 'dulled.' I can't go so far as to say he was like a zombie, but he certainly lost his light. Sure he was calmer, but he wasn't Gus. Even the bus driver, who hadn't seen him since last summer, immediately noticed the difference.

As much as I'd like him to be able to focus, I don't want to lose all the parts of him that make him special. He's laughing again. He's running and animated (boy is he running and animated!) He's joking and singing - exuberant! I'd be an idiot to not want this version around. And he's sleeping again, thank heavens! One very interesting thing - I took him to a crowded beach today and he didn't have single problem. (He had two minor incidents last week, in a much smaller crowd of beach-goers.)

I'm sure that there are many people in the world who think the dull version is more socially appropriate, just because he was quieter, but they can, quite frankly, bite me.

Wednesday, July 9, 2008


Gus's last day on Strattera was Monday. It's a huge relief, and I feel like I've got my son back. He's more animated and he's eating again, thank goodness! So far there haven't been any major complaints from school. He was a little squirmy on the bus yesterday afternoon, and he was a little chatty and loud on the bus this afternoon. Otherwise, no unsafe behavior.

I got to observe him at school yesterday for a little while and the teacher seemed pleased and impressed by his encyclopedic knowledge. I'm sure she could have done without the low-level talking to himself, but she took it in stride.

He's been showing signs of sensory turbulence lately. He'd been okay with noise for a long time, but lately, since the spring, he's been covering his ears more and more. Now there's a student in the class who screams randomly. We're considering noise cancelling earphones.

Amazing how much easier I'm breathing this week.

Saturday, July 5, 2008

Kung Fu Panda Review

It is very rare that we take our kids to the movies. They're usually too loud, too visually busy, and Gus has a hard time sitting still through them. I can count on one hand the number of movies we've been to. We decided to try again since it was a rainy holiday and the people who had invited us for a barbecue lost their power.

What a great movie Kung Fu Panda is! The entire family enjoyed it and this will probably be one that we add to our DVD collection. Jack Black and Dustin Hoffman were really wonderful, and my husband and I laughed probably more than the kids.

In general Kung Fu Panda is a nice family movie with some positive messages. It is the story of an overweight, clumsy and completely lovable Panda who dreams of becoming a Kung Fu master like his idols, the Furious Five: Tigress, Mantis, Viper, Monkey and Crane, who are all trained by the legendary Masters Shifu and Oogway. He learns to believe in himself and that being himself is the way to achieve his destiny. I will admit and caution, the fights are pretty violent for younger kids, and it gets scary at some points. But this was not a G rated film, so I wouldn't criticize per se, just caution. There was one scene where the villain, a buffed up snow leopard warrior named Tai Lung, is strangling Master Shifu and that got a bit hard even for me to watch. Yet the fights were also beautifully choreographed/animated, and were better and easier on the eye than some live action movies I've seen. Pretty amazing.

The humor was funny, but not obnoxious. One reason we pass on most kids movies is that the language and humor is often geared toward adults and not appropriate for younger kids, or kids who perseverate and echo lots of things they hear. We have to be very careful what Gus watches because he'll go and start spouting is at inappropriate times, like at school. Or he may mimic some of the behavior, as many kids do. There was a minimum, if any, of what could be considered potty humor or offensive language. Very respectfully done, but I would expect no less from Jack Black or Jackie Chan. These are two actors who have earned my trust when it comes to kids' movies.

As far as elements that might set off an autistic child, this movie is loud, but not too bad, and it's not constant. Gus didn't cover his ears once. The fight scenes did seem a little too stimulating for him, as those were the points when he got the squirmiest. I think the visuals were moving too fast and were perhaps too bright for him. At ninety minutes, it was just the perfect length for a child who has trouble sitting still. The message that you can be 'flawed' and still rise to greatness is one that I always love for Gus to see.

All in all, I'd give Kung Fu Panda 4.75 out of 5 stars. It's a worthwhile flick for any kid, and parents will have a good time as well.

Tuesday, June 24, 2008

My Little Wise-Guy

"Good night," I say.

"Good night."

"I love you," I say.

"I love you."

"Sweet dreams," I say.

"Sweet dreams."

"Mommy rocks," I say.

"Good night."

He doesn't even miss a beat. I guess all that work on pragmatic speech has paid off in impeccable comic timing.

Sunday, June 15, 2008

Strattera Update

After a brief period off of Strattera, Gus has been back on for a little while now. He started at 10 mg and then increased to 15. I took him to the doctor last week, it had been almost a month. The word she used to describe him was 'loopy.' He was not running all around the room like he usually would, but he wasn't exactly what you could call focused either. Instead of his body buzzing, his brain and mouth were motorized. He went on and on about Who Framed Roger Rabbit, very perseverative and going a mile a minute. Our pediatrician wasn't sure what to make of Gus's behavior, so she consulted with the specialist.

The specialist felt that Gus was not on a high enough dosage to see any result. He wanted to go for 36 mg a day, but the dosing guidelines limit his size/age at 25. So he started on that level this weekend.

The only real difference I see is that the meds are making him subdued and sleepy, but I don't know if that equates to focused. He's less responsive when I call him and still needs lots of reminders to complete tasks like getting dressed, maybe not as many as before, but not a huge improvement there. On the other hand, he is having some sleep issues (waking up before 5 am randomly, getting out of bed several times at bed time, sometimes waking in the middle of the night). He's not eating normally. Several times I've had to feed him. He's still anxious and has been getting grumpy on & off, but he's expressing himself more clearly.

This morning, about an hour after taking the meds, he started complaining of feeling sick, tired and of a headache, which is very out of character for him. Even when he's sick, he rarely complains, which told me that he had to be feeling pretty bad, at least for a while.

So I don't know. The side effects haven't been earth-shattering, but neither have the positive results. I'm thinking this medication may help a bit, but ultimately is probably not worth it. We'll have to let him adjust to this new dosage, but it seems more pessimistic by the day.

Monday, June 9, 2008

Beating the Heat

The heat index is reportedly going up to dangerous levels today and tomorrow. Days like these, I worry about Gus, not just for the obvious reasons, but because his body never seems to respond well to even less intense heat. He gets awful eczema all summer long, incredible angry red bumps and blotches all over the backs of his legs and inner elbows. along with the inflammation come itching and discomfort, sometimes he rips up his skin something fierce. The rashes have, at times, extended to more unmentionable parts too, which is my big concern today.

Last week it was hot, but not sweltering. He apparently kept fussing with his pants and before the end of the day, he pulled them off. His tactile sensory issues are usually only a problem if he gets his clothes wet, so I concluded that his skin was the issue, not the clothes. I put what I could on his skin today to keep him comfortable (as much as I hate using steroids i.e. hydrocortisone, I can't watch him suffer for the next three months). So hopefully, he'll keep his pants on - literally - today. And I really hope that someone has the good sense to keep the little ones indoors, out of the beaming sun, today.

If anyone knows of any natural eczema ointments or creams that work really well, please comment and let me know! It would be great to help him without the steroids.

Saturday, June 7, 2008

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 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.

Thursday, June 5, 2008

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.

Monday, June 2, 2008

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.

Sunday, June 1, 2008

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.

Friday, May 30, 2008

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.

Wednesday, May 28, 2008

Pardon Me, But I Think You're Full of Poop

An IM conversation I was having with a good friend:

"I hypothesize that if there were less a*holes in the world, our kids would have an easier time."

"That is also amazingly true, but for some reason being an a*hole is acceptable. Because it is the norm, I guess?"

Gus was on Strattera for six days. Of those six days, the first day was fine; second day he needed prompting in the afternoon; fifth day (a Monday) he had a bad day; day six he was okay at school, but wouldn't stay in his seat on the afternoon bus. Honestly, these reports could have come at any time, whether on the meds or not. They were pretty unremarkable except for the school bus incident. The end of last week he had two decent days off the medication.

Today, his first day back from the Memorial Day weekend (he never has a good day after a weekend or holiday), also the day the teacher found out that he'd been off the meds for a few days, he apparently had a terrible day. I got a whole laundry list of things he did wrong today. And suddenly it seems that she had a feeling he was off the meds.

I think she's full of something stinky.

I'm so fed up with the ridiculous expectations and the negative attitude. Not that Gus is an angel, but he's a pretty good kid. Seven-year-olds can be defiant, so can five-year-olds and teenagers. Why must my kid be singled out every day of his freaking life because he's not medicated?

We'll probably try a different dose of the Strattera before switching to the Focalin. Heaven help these people if he gets so out of control that he does something really dangerous to himself or if this medication harms him in any way. Heaven help them.

Edit: Doc and I have settled on a slightly higher dosage for a few days to step him up slowly. I have a headache now.

Tuesday, May 27, 2008

A Society of Meanieheads

A few days ago a story came out about a five-year-old boy in Florida, Alex Barton, who was voted out of his kindergarten class. The teacher should be ousted permanently and I hope to heaven that the parents sue the school and the teacher for everything they’ve got because the behavior that the teacher displayed was all kinds of disgusting. Unfortunately, her attitude is not uncommon enough.

There’s always talk about social skills that children need to learn. Autistic children are drilled with them constantly. My daughter is starting kindergarten in September, and I was given a long list of skills that she should have in order to be ready for kindergarten. But what I see from some of this year’s kindergartners doesn’t exactly jibe with the supposed ‘social skills’ on the list. Instead I hear stories about our neighbor whose ‘friends’ were sitting on her and refused to stop even after she asked them to and said she didn’t like that. When she started crying and wiping her nose with her hand, they went to her mom on their way off the bus to tattle that she was picking her nose and eating her boogers. Her mom has often commented that the little girl was the sweetest, happiest child before she went to school.

I look at my own daughter and know that she is not the sort of kid who would be that mean spirited. Hopefully school won’t corrupt her.

Then there’s Gus. He’s another of those kind-hearted, laid-back kind of kid. He’s got an easy smile and he wouldn’t harm a soul intentionally. Yet he’s had kids even younger than him call him names. Even now I hear snippets of stories – little kindergarten girls in the schoolyard telling him to “go away” when he tries to use the social skills he’s made to learn at school. No wonder he’s started picking up words like ‘dork’ and ‘stupid.’ We thought it was from TV, but I think it’s the kids at school.

I have to wonder – who has the better social skills here?

I hope Alex Barton finds a better, more accepting school. He doesn’t need to be around those kids who are being taught that mean is socially acceptable.

Here's the Palm Beach Post article from last Friday, and apparently the teacher has been removed from class during the investigation.
Here’s the link to the St. Lucie school board if you want to voice your displeasure about this outrageous injustice.

Thursday, May 22, 2008

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.

Wednesday, May 21, 2008

I sent Gus to school today without any medication. The report from his teacher was that it was a pretty good day with only a couple of issues - he didn't finish his work fast enough to get computer time and then he got upset. Just like yesterday. I wonder if the level of improvement we saw was just a placebo effect. Maybe he was just having good days and they had nothing to do with the Strattera.

He had a better time on the bus until he was almost home and then he got a bit unruly again. I can see that he's nowhere near as wild today as he was then. Yesterday he came in and was crashing into the door and was just running non-stop. He had a burst of energy when he got off the bus, but he's fairly calm at the moment.

Gus also slept better last night. I think that probably has more to do with putting the blackout curtains up again.

So, I'm convinced that we are done with Strattera. I've ordered a homeopathic ADHD remedy to try over the weekend, just out of curiosity, before I talk to his doctor again on Tuesday or Wednesday. She had wanted to try him on Focalin, which is a stimulant(similar to Ritalin, but longer lasting).

As an interesting aside, I read that 100mg of coffee has a similar effect on the brain as the lowest dosage of Ritalin. Maybe I should just get Gus to start drinking coffee?

Tuesday, May 20, 2008

Getting Worse

Gus was up at 5 am today, and by 5:30 was completely off the wall. Yet his teacher reported that he had a pretty decent day, only "got caught" not doing his independent work twice. However, this tells me that he wasn't focusing. The real disturbing news came just now from the bus monitor.

He's always been especially good on the afternoon bus, so good that he hasn't needed to be in his car seat. Today, the monitor said she had trouble with him staying seated. Right now he's hopping around like a jack rabbit on speed. I'm used to high energy and racing around from him. This is way beyond his usual level of hyperactivity.

I'm waiting for a call from the doctor. If he's like this on the lowest dosage, will he get worse by increasing it, or will an increase have the desired effect?

I want to scream right now. I hate, hate, hate this process. It's hard enough to watch my son when he's struggling for control of his behavior and his body under normal circumstances. To think that something that I'm making him take (he spit it out this morning) is making his struggle so much worse, makes me want to kick myself. But they've said that it can take time for the body to adjust. What the hell am I adjusting to though?

Edit: After a conversation with his doctor, we've decided that Gus is going to stop taking the Strattera, at least for now. We'll see how he is for a few day s and then decide if we're going to increase the dosage. I'm very worried about that prospect and so is the doctor. She expected that he'd have no noticeable response, if any. So we'll revisit after the holiday weekend.

Sunday, May 18, 2008

Gus was very excited about his sister's dance recital yesterday. He was so excited that he got very emotional, crying because he wanted to leave already and the anxiety was too much. When he got to the show, he enjoyed himself immensely. He danced at his seat (my sister said he reminded her of our mother who always did the same thing at concerts) and sang along to the music. Unfortunately, there were people sitting behind the family (I was backstage volunteering with my daughter's class). So they took Gus out for a walk around the school, let him run around the gym for a bit to blow off some frenetic energy. He came in for her second number and made a break for the stage (during someone else's act). Fortunately, his Nana caught him. As soon as he saw his sister perform, he had to be taken home. The whole thing was too much for him.

And that was on the medication.

It didn't seem to help all that much. It's pretty much what he would have done had he not been on the meds.

Granted, he may not have been taking it long enough, or he may need a slightly higher dosage. Right now, the benefits have been minimal at best. But at least he enjoyed the show.

Saturday, May 17, 2008

Promising, so far

The report from Gus's teacher was pretty good at the end of day two. He had a good morning but needed more redirection in the afternoon. I was concerned that she'd be less than objective and gloss over negative behavior out of a desire to not have me give up the medication trial too soon. I should really trust her more by now, but I'm not a trusting sort by nature, so I just have to work within my own limitations.

I didn't notice anything before he left for school, but in the afternoon he had stayed awake on the bus as usual. The biggest thing was that he was much calmer than he usually is. He wanted to write a story for my sister who was coming to visit and he sat down several times to watch television. He usually races back and forth through the room, crashing into the doors. He was still hyper, but it was definitely a subdued hyper. I had to laugh at the look on my sister's face when I pointed out, "this is calm."

I'm still somewhat peeved about the meds, but perhaps I'll get over it in time, if we see a real improvement in Gus's ability to control his impulses and focus at least in school. I must keep reminding myself - this isn't about me; it's about what will help him to learn and function safely in the world.

Thursday, May 15, 2008

Strattera - day one

I'll apologize now if this happens to get boring, but I need to chronicle Gus's reactions to the meds and this is more reliable (unless I somehow lose my computer) than physically writing down. I may just do both.

I took Gus to his pediatrician yesterday and she took some baselines of all his vitals. He'd already had his liver function checked not long ago when he started his genetic testing. So we started him on the lowest dose - 10 mg - this morning.

An hour and a half later, he was racing around, but he got himself dressed, down to his shoes, with minimal redirection. He's responding when I ask him questions & doesn't seem zoned out at all. Right now, he's watching television quietly. He's covering his ears, which he's been doing a lot, but not usually in the house. He usually covers then when he's going to the bus.

As much as I didn't want to (just to see what the reports were without them knowing he's on medication) I had to tell his teacher that he's started the medication trial. Heaven forbid he suddenly has a bad reaction or an accident in school - they'd need that information. So, we'll see what she has to say this afternoon.

I am not happy about this latest turn of events, but if it helps him I guess I can live with it.

Tuesday, May 13, 2008

My Son the Bat

"What are you humming?" The question came from the dining area, about seven feet away. There was a little sister talking and the pellet stove fan was droning, not quietly. But Gus was able to hear that I was in the kitchen humming to myself very much under my breath.

Seven feet isn't that far, but with other noise going on and me being very quiet, I'm amazed that he heard. It explains why he's still covering his ears when he gets on the school bus or while at school. We may not notice offensive sounds, but he clearly hears things that the average person would not.

This uncanny ability leads me to wonder what he's really been crying about recently. He had about three crying spells last week and another one yesterday at school. I wonder if he's heard us talking about the medications. I really have to be better about not discussing him when he's within HIS earshot, because even when he doesn't seem to be listening, he often is.

"What are you humming?" From the top of the dining table with a book opened in front of him, he never even looked up. But he heard me.

Sunday, May 11, 2008

Mother's Day Was last Week

All week long, Gus has been incredibly huggly and snuggly and kissy. At school, they must have been working on saying, "I love you very much," and punctuating it with a kiss. Gus's usual demonstration of affection is to 'peck' me like Piplup the Pokemon. So it was fun when he started giving actual kisses, but not quite the same. The kisses were sort of forced and rehearsed. But both are welcome, don't get me wrong.

Anyway, I've had a week of hugs and kisses. This morning, Gus woke up and never even came into our room! He was more concerned with getting downstairs to make French toast for me (in bed at that)! Apparently I had used up my quota of hugs and kisses.

Finally, I called him and my husband steered him into our room to wish me a happy day, blah blah. I said, "You haven't given me hugs and kisses today." He climbed right up on the bed and gave me a whole week's worth of pecks. Now that is a great gift.

Friday, May 9, 2008

Perhaps too soon

Gus had a horrendous day on Monday, which led to a phone conversation with his counselor and with her once again trying to convince me to try him on medication. I was getting very worried about his impulsivity, so I spoke to his pediatrician (the specialist he sees is also leaning towards medication). Everything is in place to decide on a medication trial - either Focalin or Strattera.

The funny part is that Tuesday, Wednesday and Thursday, he was great at school. Not a single complaint from his teacher, and he even got to go with her to the school plant sale where he picked out some marigolds for me.

This does not sound to me like a child in need of medication. Maybe we're jumping the gun on this.

I'm reminded of a Dave Matthews lyric from a song called You Never Know:
"But rushing around seems what's wrong with the world..."

You're not kidding Dave.

Rush to vaccinate, rush to medicate, rush to integrate.... Can't we just slow down a tick?

Wednesday, May 7, 2008

Is This What It Feels Like?

I had a very uncomfortable experience last night and somewhere in the midst of it, I started to wonder if this is what Gus feels like when he's wound up. If it is, I really feel for him, because it felt awful to me. This wasn't the first time I'd felt this way, but it was the first time I'd ever connected the feeling to what he might experience.

I had to work last night so I had a fifteen minute nap around 8:30 and some caffeinated tea around 9. After I finished my tutoring shift, I stayed up to take care of some other business until around midnight. I was thoroughly exhausted, but I could not fall asleep. After forty-five minutes of tossing and turning I started to look more closely at what I was feeling and I actually started to write down all the different sensations.

At 12:53 am, there was a loud humming in my ears, like the sound of a high voltage cable. This was mostly what was keeping me up. It was coming from inside my head and no matter what I did, it wouldn't stop. Not only could I hear it, but I could feel it - like my entire body was vibrating at a high frequency. Nothing worked to stop it and after a while, I really wanted to beat my head against a wall. The last time I felt like that was when I tried to go vegetarian years ago. I ended up with WAY too much energy and for 5 months, I couldn't sleep and always felt that humming/buzzing going through me. It didn't go away until I started eating meat again; the meat had a grounding effect on me.

In addition to the humming, the other noises in the house started to seem louder - I suppose darkness does that, but it made me extremely jumpy. I made my husband get up and check the downstairs once and two other times, I sat bolt upright, on high alert.

My muscles were tight. Being a yoga teacher, I've become very attuned to my body and I'm accustomed to a feeling of muscles hugging the bones when the muscles are engaged. Last night my muscles were choking my bones, causing a dull ache, and I had to keep stretching and flexing because of the discomfort.

Last, my mind was racing. I had more images and ideas than I could even keep up with - they just added to the internal noise. For a while, I was preoccupied with the stuff that's been going on with Gus's school, then with all the things I have to take care of...stupid things like applying for a new library card. That is not something that should keep me up at night.

I don't know if it was the caffeine or too much computer time just before bed that overstimulated my brain. But I have to work again tonight and I have a busy day today, and I don't know how I'm going to drag myself through it. One thing I do know, I'll be a lot more sensitive to Gus next time he wakes up in the middle of the night and can't go back to sleep.

Tuesday, May 6, 2008

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.

Monday, May 5, 2008

I.E.P. Diplomas Mean Squat

At Gus's last CSE meeting, it was mentioned that we have another year before we have to worry about standardized testing. I had asked about it last year as well. It boggles the mind how students in special Education are still required to take these tests. What's more disturbing is that if they don't pass the tests - or at least a certain number of tests - they do not become eligible for diplomas. This means that unless they complete at least an additional year of schooling AND pass a GED exam, they can't go to college or enlist in the military (military being a moot point in most cases anyway, I'd think).

This has bugged me for years, even before Gus was born when I was teaching high school. I worked in an incarcerated setting with children who were navigating the legal system. The last thing on their minds was a Regents test. So almost across the board, they failed and were rendered ineligible for regular high school diplomas even if they avoided long jail sentences.

What is the point of forcing a child who can't sit for thirty seconds, let alone three hours, to take an exam that stacks the cards against them? Years ago there used to be allowances for Special Education students to provide portfolios to demonstrate mastery of the state curriculum, but those have been phased out. It was certainly a fairer assessment tool than the damned standardized tests that are killing our educational system and leaving every child behind.

Test taking does not equal learning. There will be some brilliant kids denied higher education because they can't pass a stupid test, while those who can pass the tests will only have managed to prove that they can regurgitate information at least until that three-hour block of time is done, but not that they can necessarily think critically or assimilate the knowledge beyond the piece of paper with the annoying little circles.

Gus would probably be able to pass the third grade English exam now, if he could actually focus long enough to finish. It's going to be a thorn in my side for sure, but hopefully they can give him accommodations that will actually allow him to show how much he can spit back. No test will ever give a true picture of how smart the kid really is, but if he can get a diploma and go to college, I'll be satisfied with having that knowledge for myself.

Saturday, May 3, 2008

A Break from the Gloom and Uncertainty

Two fun things about Gus today...

Gus woke up around 5:30 and came into our room as usual, said good morning and turned on the light. He lay down on the futon in our room for a few minutes, but then got bored, so decided to climb on us instead. Daddy took him to his room and set him up with some toys, where he stayed very obviously content and happy. How do I know this? He started humming the themes from Mario Kart - his favorite video game! I was only half awake through all this, but what a nice way to come into full consciousness, listening to your happy child humming away without a care in the world!

The really big thing is that Gus is receiving a Principal's Award for Outstanding Effort! Woohoo!!! I can't even express how proud I am of him! It seems as if this is a school-wide award, meaning that he was selected out of all the students in his school, not just his class (I think that's the case anyway). I know he's been mainstreamed into one class - music. I'm just floored.! The assembly will be on Monday and I won't miss it for anything :-)

So that the good Gus news of the day! :-)

Friday, May 2, 2008

Still Unresolved

Gus had an appointment with the Developmental Specialist on Wednesday, which of course through my new found sense of relative equanimity out the window. He seems to think that we should consider trying Gus on ADHD medication in the fall. He'd start with a low dose of Ritalin and see what happens. One thing I'm pretty well convinced of is that I don't want my son on drugs. I've got two major concerns, just about the physical impact of those drugs:

Increased heart rate
Decreased appetite

My child already has a pretty speedy heart rate; I can't imagine giving him something that would speed it up even more. That seems ludicrous to me. And he's skinny as a rail, despite eating as much as he can get his hands on. He certainly does NOT need to lose his appetite.

These are just the immediate physical problems that I'd worry about. Then there's the long range effects, which I refuse to believe don't exist as the doctor keeps trying to assure me. And do I really want to start a seven-year-old on the road to a drug dependency? I just can't see my way clear to that right now. Also, my husband was put on Ritalin as a kid for a short time; all it did was zonk him out. He didn't focus any better. This suggests to me that Gus might have the same result.

In my panic, I suggested to my husband that maybe we should try gluten free, just to be sure. Why should it be easier to consider drugs than dietary change? He said he'd go along with it, but was clearly not pleased. That night I started thinking, again.

If I look at each of Gus's 'issues' individually, I can trace every one back to myself or my husband. His biggest problem (academically) by far is attention span and difficulty with sustained attention. Both his parents continue to live with that. I don't have ADHD, but I've always had a wandering mind. No one ever thought twice about it because I was a straight-A student. I also talked incessantly in school; Gus talks incessantly all the time. Most of the hyperactivity and attention stuff, not to mention the fine motor skills are things that my husband still struggles with. I've had loads of sensory issues forever, including trouble with noise, cold and physical contact (getting a massage is like torture most times). But for all those difficulties Gus seems to have inherited from us, he's also picked up an incredible memory, a high level of intelligence and a lovely affinity for music (perfect pitch, even though he can't play an instrument or read music). So I'm not trying to make excuses or diminish his successes, just making the point that as far as I'm concerned his weaknesses are genetic, and it's not unreasonable to note that some genetic conditions worsen with each generation.

Does any of this mean that he wasn't effected by mercury? No. I double checked with the specialist and apparently, they DID NOT test for mercury a s I thought. Only lead. And, we realized this morning that last summer, my father-in-law had broken one of those new lightbulbs - the ones with the mercury in them (which I didn't know at the time). Hm...interesting to note. I wonder what they would have found if they DID do the mercury screen after that. The medical field amazes me sometimes. I think I will pursue this, just out of curiosity, but that doesn't mean I'm heading towards chelation - let's be clear on that for now.

I tried an experiment last night. We had taken the kids out for MM's birthday. I tried to steer her towards a Japanese hibachi place, but she was set on a steak house. So I decided to ease up on the dairy ban for a night, just to see what happened. Gus had a cheeseburger and mashed potatoes. By the time we got home, he was very gassy and his use of words slipped. He was still talking, don't get me wrong - the difference was very subtle. But he wasn't being as clear or lucid as I've come to expect. The past two nights, he's been exhausted to the point of tears. The first night he curled up in my lap and clearly told me what was upsetting him. Last night, he did the same thing, but part of what he was trying to tell me came out mumbled and garbled. Even this morning, my husband was trying to talk to him and had to remind him to use his words. Gus was talking like a Pokemon more than using his words. Was this in response to dairy? Maybe, maybe not. But I think I'll stick to casein-free for a while longer because if nothing else, the air in the house will be more breathable without it.

Wednesday, April 30, 2008

Straddling that Yellow Line in the Middle of the Road

I haven’t made a post in a while because I’ve been doing lots of reading, probably too much, and thinking. I seem to be at a sort of crossroads. But maybe I’m really not – I’m not entirely sure what to think anymore.

I went to a documentary premier a couple of weeks ago, followed by a panel of biomedical intervention specialists: a couple of DAN! Doctors, a homo-toxicologist, a holistic nutritionist and a reporter, David Kirby, author of Evidence of Harm. The movie being screened was entitled Autism Yesterday, and it profiled five families who had ‘recovered’ their children of autism with the use of biomedical interventions.

I was a bit skeptical when I first heard about the screening and panel; I almost blew it off. But I figured it wouldn’t hurt to listen, so I accompanied a friend, a dietician. I wasn’t exactly off base in my skepticism. Each family showed video of their children having meltdowns, head banging, toe-walking, inability to speak, the typical behaviors associated with autism. And then miraculously following either special diets or chelation or some other combination of biomedical treatments, they proclaimed their children recovered and then showed them talking and behaving almost typically. So here’s my first problem: It they are almost typical, and still need the myriad therapies, how can they be called recovered? They were greatly improved, skillwise, and seemingly happy kids, but I don’t think that can honestly be touted as a full recovery.

There was a lot of talk about mercury and vaccinations – more information than I have been able to process truthfully. I bought David Kirby’s book because I wanted to read what he had to say. It’s quite disturbing. I haven’t finished it yet, but so far every indication is that, whether or not it caused the rise in autism diagnoses, an awful lot of kids seem to have been given way more mercury, in the form of thimerisol, in their first year of life during the late 90’s. This disturbs me, yes. But then again, I’m not sure that I want to go running to our old pediatrician to find out exactly how much mercury was pumped into Gus.

My husband and I discussed some of these theories and determined that they don’t seem to apply to Gus – none of them. No genetic abnormalities were found in three rounds of genetic testing, which I stopped because my son is not a pin cushion. He was tested for heavy metals and his numbers were not alarmingly high, so I’m not really inclined to chelate him on the possibility that there might be mercury hiding out in his body somewhere. And he has never shown the severe gastric distress that most of the activist parents describe in their children, so I see no reason to remove gluten from his diet. I’m even wondering about the benefits of our non-dairy existence and may ease up on the ban slightly. Why? Because the kids like their cheese.

All the stuff I’ve read from that side of the debate, aside from giving me nightmares (literally) led me to seek out counter-arguments. So there’s this other school of thought that believes autistics just need acceptance and to not be treated like damaged goods. I agree with that. They don’t seem to buy into the mercury/vaccine theories or the biomedical theories…I can understand that as well. Nothing, including any genetic defect, seems to fit my Gus. I know he wasn’t ‘made autistic’ by vaccines, although they may have exacerbated what was already present. The day he was born he was different and sensitive. He just…was.

Where I start to diverge from the more ‘positive’ camp of thinkers is that while I see my son as a blessing, I don’t see his autism as a necessary blessing…or a curse. It is what it is, I guess. It’s for damned sure not all roses. I’ve never been one to insist that the glass is half full; there is half the water’s capacity and I can’t be bothered to judge beyond that most times. Sometimes, life with an autistic child, it’s hard, but the rest of our life - bills, work, family - is also hard at times too. As a matter of fact, Gus is often easier to raise than his five-year-old, typically-developed (so far – I’m waiting for a teacher to tell me she has motor skills issues because why wouldn’t she with an autistic brother) sister. This difference has little or nothing to do with his autism; he’s just an easy-going kid who likes peace around him. But I worry more about bills than I do about his autism, and I get more upset about family matters than I do about his behaviors.

I’ve started trying to remove environmental toxins from the house. Not because he’s autistic, but because he’s got eczema. If there are ingredients in the laundry detergent known to cause irritation, maybe removing them will make this summer a bit less ‘steroid-y’ trying to cope with the flare-ups. By the way, the dairy removal also had a little to do with his physical health and sensitivities, not just the mental ones.

When I tell Gus to stop humming while he’s eating in a restaurant, it’s not because I’m ashamed or that people will look at him funny, although I certainly don’t appreciate when they do. But I was raised to have consideration for the people around me. MM isn’t allowed to crawl under the table or climb on the seats either – because it’s annoying and inconsiderate to the people around us. Should I expect that the world should just suck up whatever my kids dish out because they’re kids or because one of them is autistic? That’s craziness. I don’t care if my son runs through the house (except when it starts making me dizzy), but he has to know that he can’t do it in school. Why is this an unacceptable expectation or trying to make him something he’s not?

I don’t need my children to be perfect or anyone’s version of ‘normal,’ I just want them to be healthy and happy and compassionate. I want them to be able to navigate the world safely and independently because realistically I won’t be around forever. But I have no intention of tormenting Gus with treatments or medications; he’s not sick, just different and learning every day.

I doubt that I’ve made a definitive point here. This is just some of what’s jumbled up in my brain, trying to find an escape. Hopefully tonight there will be no nightmares.

Monday, April 21, 2008

Absolutely amazing

This little boy never fails to amaze me. He had to have 2 baby teeth out today. I fully expected a disaster and prepared accordingly. I made sure that my husband was home to take care of MM so that I could fully attend to Gus. I explained in very vague terms what would be happening today as we arrived at the dentist. We had planned to use Nitrous Oxide, but the machine was broken. I was tempted to just reschedule, but I decided we would try and see what happened.

The dentist was absolutely wonderful. He went very slowly with the Novocaine injections. Gus winced a few times, but he was the calmest I've ever seen him in this type of situation (he had to have stitches once and also underwent another surgery). And then with a few twists, the teeth were out! No fuss, no sweat!

I am so proud of him, I can't even believe it. He's a way better patient than I've ever been!

Today was a big win and I think the tooth fairy will be bringing a pretty sweet prize tonight!

Wednesday, April 16, 2008

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!

Tuesday, April 1, 2008

World Autism Awareness Day

I learned from Gus's teacher that CNN will be running programming all day tomorrow, April 2nd, dealing with Autism Awareness. I checked some of the features on their site today and it seems like it would be worth checking in with at some point. Just thought I'd share.

Friday, March 28, 2008

Autism Information Fair - Westchester County, NY

A good friend of mine emailed this to me, so I thought I'd share:

Navigating the Spectrum and The Westchester County Department of Community
Mental Health are proud to sponsor The Second Annual Autism Information Fair
Sunday April 6th from 11 am to 4 pm
Westchester County Center
198 Central Avenue - White Plains, NY
Parents, therapists, educators, health care professionals, school
administrators and anyone who cares about a child on the spectrum are invited to
join us for a day of education and empowerment. Connect with families affected
by ASDs and network with knowledgeable and encouraging professionals. Learn
about Interventions and Services available for all ages, from toddlers to
adults. Visit Over 40 Scheduled Information Stations Including Applied Behavior
Analysis - Relationship Development Intervention - DIR and Floortime TEACCH -
Occupational Therapy & Sensory Integration - Speech & Language Pathology
Physical Therapy - Medical Interventions - Nutritional & Biomedical
Interventions Special Education Law & Advocacy - Assessments &
Evaluations - Family Resources Literacy Development - Math Development - Post
Secondary Educational Options Self-Injurious Behavior Management - Family
Support Services - Recreational Programs Respite Services - Social Skills
Programs - Transitional Services - Vocational Training Residential Options -
Family Management - Auditory Therapies - Vision Therapy Chiropractic - Cranio
Sacral Therapy - Interactive Metronome - Creative Arts Therapies Research
Studies - Complementary & Alternative Treatments - Plus Many More...

Breakout Lecture Schedule
Toddlers and Preschoolers School Age Children Adolescents & Young
11:30 - 12:30 1:00 - 2:00 2:30 - 3:30-

Getting a Diagnosis - It's Never Too Late to - Puberty and Sexuality-
Securing Services Try Something Different - Transitional Services-
Multidisciplinary Approaches - Friends and Fitting In - Vocational
Therapeutic Options - Peer Pressure & Bullies - Residential Options-
Educational Advocacy


Navigating the Spectrum - -
(914) 826-5300
Dept Community Mental Health -
- (914) 995-5220

Saturday, March 22, 2008

Summer Safety Concerns

There's always a fine line that I find myself walking between doing too much for Gus, trying to protect him too much, and allowing him to learn things for himself. So I tried last weekend to let him ride his bike without hovering over him. He went down a hill, not a steep one, but steep enough to gain a decent amount of momentum. I was shouting for him to use his brakes, but apparently he's forgotten how since last year. He nearly ended up in the main road - he didn't even think to turn. His father was close enough to catch and stop him. We won't be taking that chance again.

So we took the bikes out again today and again, I tried to get him to use his brakes (on a secluded side road) and this time he went up on a curb and almost into a stream. Insert deep sigh here. I was a little frustrated by then, so I told him he would not be allowed to ride outside of our parking lot until he learned to use his brakes. Then I marched him, well, rolled him actually, back to said parking lot.

There was a group of teenage boys wrestling near the house. Amazing how at almost seven years old, he's already concerned about his image to the big boys because as I was trying to help him up the hill, he pushed me away.

Anyway, we practiced pedaling and stopping, or at least we tried to. I feel bad for him. He doesn't have the coordination to pedal backwards to stop, but doesn't have the hand strength to use the hand brake. It doesn't help that the brakes seriously need tightening, more than I can do myself. I'm predicting a trip to the bike shop in the near future.

Is it imperative for him to be able to ride a bike? No, not really. But he likes it and I'd like him to be able to do it. But I can't just let him run amok because he doesn't have the safety awareness to know when he's heading for trouble.

It's going to be an interesting summer.

Wednesday, March 5, 2008

Smart Mouth

Sometimes I have to wonder what's worse: having a child who doesn't talk or having one who talks too much without fully understanding what he's saying.

Ha! His sister just told him, "I think you forgot that words have power."

So, Gus is being punished tonight. No television for the rest of the afternoon and evening. He was apparently misbehaving at school all day, but the worst offense was that he called one of his aides Stupid. Now, I know full well that he didn't mean it in the context that most people would assume, but that's beside the point. He knows he's not allowed to use that word. He sees it on television, he reads it sometimes in books, heck, sometimes I even slip and use it. But the message is always clear: it is not a nice word and not allowed. Period.

It's not as if he's watching anything above a G rating or reading things that are really inappropriate. We're currently reading A Wrinkle in Time, which is an amazing story and well within his ability to comprehend with minimal assistance. Before that we read Pippi Longstocking - a classic. He watches mostly Noggin, Disney or Discovery Kids, or sometimes old Superfriends. Teen Titans is the one thing he probably shouldn't be watching because of the violence, but the language is actually quite tame (comparatively) and my kids are banned from certain episodes that I consider over the top. Shows or movies with 'rude' humor are not allowed at all. The only time he's ever been shown Sponge Bob, for example, was at school last year. My point is that compared to what some kids are allowed to watch or read, his entertainment diet is quite bland in terms of language.

Gus has a tendency to repeat what he hears if it sounds giggalicious, but he has to learn that he can't just say anything and then hide behind the excuse that he heard it on TV (which he tried to pull with his teacher, who, rightly, did not buy it).

I know this 'freshness' is age appropriate, and in a sense we should be glad that he's acting like a 'typical' kid...I suppose. I guess the loss of that sweet innocence is tough for any parent, autistic child or not.

Edit: I got Gus to write an apology letter to the aide. Later this evening, just before bed he started crying and saying negative things about himself, which I put a stop to, telling him that he was not those things, that he made a mistake and took the consequenc and that it was done with. He said some other interesting things. He asked how he could get the bad things out of his brain so that they couldn't come out and also said that there are too many things he has to remember. Totally heartbreaking. He wasn't being malicious in any way. I hope hos teacher understands this.

Monday, March 3, 2008

Two Weeks Later

We've been able to maintain our dairy-free diet for two weeks now. Gus still won't touch any of the other milks, not even the chocolates or vanillas. But otherwise, it's gone fairly well. I think that I'm having to redirect a little less in general, more so when he's kind of tired.

The real test for me was what his teacher was going to say. I didn't tell her that we had made any changes and I spoke to her on Friday. Now, during the week, there hadn't been any negative reports. But when I asked her if she'd noticed any difference in him, she said she hadn't. The only difference was that he wasn't taking things off of the aide's desk. I've asked her to let me know if she does see any changes.

Even if there isn't a significant difference in his ability to focus, I definitely feel that he's more 'with it' and more conversational. Maybe the other part will come in time. It's only been two weeks after all. So we're sticking with this plan at least for a while longer.

We're getting as much calcium supplementation into the kids as possible: fortified juices, multivitamins with calcium and calcium gummies (those are a huge hit). Those things as many calcium rich foods as I can get my kids to eat seem to be working out fine. I was very excited to find that Apple & Eve now offers calcium fortified juice boxes. If I could find a decent non-dairy mozzarella or ricotta cheese, we'd be golden!

If you're trying a dairy-free diet, please share your experiences! We'd love to hear them!

Wednesday, February 20, 2008

There could be something to this

This is day four of our dairy-free trial and I'm actually hopeful this time out. Gus has been, moreso today, more 'tuned in' and aware of what's going on around him. First thing today, I said, 'good morning' to him and he responded the first time. I normally either get no response or have to repeat myself a few times. Then, and this was the heart sweller, he made eye contact with me...and held it for several seconds with no prompting. That is extremely rare!

He's been active today, but not wildly out of control, at least not until his grandparents arrived, but I attribute that to general excitement and nothing more. His sister is just as out of control.

Another example of his being more alert and connected to his surroundings: we were playing a computer game with Mama, and Gus chose to play with his hand-held game. No problem; he'd been asking for it for days. But even while he was involved with his own game, he became curious about what we were doing and kept asking what was going on in our game. He wasn't completely immersed in his own thing. Eventually he came to join us.

He's been more conversational and less perseverative/questioning than is typical.

So, my conclusion is that these things could be for any number of reasons, but I have good reason to believe that cutting the dairy may be helping. The real test will be when he goes back to school. I don't intend to mention the change to his teachers because I want to see if they notice any difference.

Cross your fingers for us.

Oh, and anyone who has gone this route and could offer any advice, it would be very appreciated.

Sunday, February 17, 2008

Trying Dairy-free

We've tried all-natural and low sugar diets with the slightest success and a big increase in our grocery bill. So they've more or less stuck. We tried gluten-free for a week and it was just too hard at the time and not cost effective. It wasn't a long enough trial run to have seen any results, but I'm not inclined to go there again until finances are much better.

So we're going to give dairy-free a go. Just for a week. From what I've heard if Gus has any kind of dairy allergy or sensitivity or allergy, we should start to see a reaction within a week. Also, since my daughter and husband refuse to drink milk, we're a good portion of the way toward being dairy-free anyway. I've had to find ways to get her an appropriate level of calcium without drinking milk. Cheese is going to be the real challenge. And mayonnaise. My kids both consume cheese in huge quantities. And I have tried to slip in dairy free or soy cheeses before to see how viable a dairy-free diet might be if we ever decided to try it. They hate that stuff. I may be able to get Gus to drink rice milk if I go for the unflavored kind. He's gotten accustomed to drinking skim milk and the consistency is close.

We're doing it this week because he's off from school so I'll have a chance to really see if there's any change.

I've also been doing some looking into this theory of yeast overgrowth in connection to spectrum disorders. While I'm not sure I totally buy it, I'm doing some research. I need to have a chat with our dietitian this week. So I'll have some more info on that shortly, I hope.

In the meantime, if anyone out there has advice on how to make picky little cheese lovers dairy free, I'd sure appreciate the input!

Saturday, February 9, 2008

Considering meds again

I'm thinking a great deal again about whether or not to try Gus on medication. From the daily reports I'm getting from school, and from his report card, he's not improving in very specific areas. Academically, he's doing just fine, but he doesn't follow instructions unless he is given constant redirection. So, the complaints are that he's unfocused and not completing assignments. Now, part of me recognizes this as the district building a case to push us to medicate him. That is actually part of my resistance to the idea. But at the same time, these are not fabrications. I know he needs to be told something fifty times before it gets done. His mind is very busy; he has no time to think about something as trivial as putting a shirt on when he's cataloguing animal groups.

I am very much against rushing him into mainstreaming before he's ready and I absolutely do not want him sentenced, from the age of six, to a lifetime of medication. But at the same time, I can't help but wonder if he might get a little more enjoyment out of life if he could focus long enough to learn some things, like riding a bike, or if he could make one friend. Would medication help this along? I don't, and won't, know unless we try it. It seems harmless enough - a trial at a very low dosage - but there's just something in me that cringes.

We definitely need to do some more research. He already has a pretty revved up heart-rate. If the meds increase this, is there any danger to him? He's borderline underweight, and the meds are said to decrease appetite. Will he be zoned out? Will he be less curious and...happy? He's such a bubbly kid - I don't want to dull that. He sees into things in ways that only an incredibly sensitive and perceptive person could - I don't want him to lose that ability. That's part of what makes him so special.

It seems like such a huge tradeoff, potentially.

At any rate, we won't even consider a trial until after his next IEP meeting. And I don't intend to share our decision one way or the other with the school, or pretty much anyone. It's very frustrating and kind of depressing that I'm even allowing the thought to stick with me.

Tuesday, January 29, 2008

Interesting and Distressing

A couple of years ago, probably closer to three, we took a family vacation to visit my mom. While there, we took Gus to a playground. There were four little girls there. I don't remember it all clearly, but I think I was at the other side of the playground, maybe following around my daughter? At any rate the playground had one of those big play sets with a space underneath with some benches and a little table where Gus and his sister had been playing. The little girls decided to play there as well and attempted to play with Gus. I wasn't aware that they were playing some sort of game that involved capturing him, but they began chasing him and he bolted. I caught him before he left the park and got him away from them; he was rather upset.

Why do I bring this up now? Tonight just before bed, he asked me why I left him at the park, and then proceeded to recount his version of that day's events. He thought I had left him and was scared. Since he was being uncharacteristically clear and open with me, I talked to him about it. Then he started to cry and told me that talking about it was making it worse.

I have no idea why it came up tonight or why he's still so upset about it, but the thing that bugs me the most was that he thought I had left him. Tore my heart right out. I'm usually the parent who won't let the kids out of my sight and I've always got people trying to make me 'let go.' Let them sleep over with someone, let someone take them wherever. It is extremely rare that I give in. Hearing something like 'why did you leave me,' will certainly not make me feel any better about doing so. At the rate I'm going, he'll be in college before I let him have his next sleepover.

I wonder how else he sees his life, I really do.

Wednesday, January 16, 2008

Typical is not off

Gus has had a substitute teacher for a few weeks now. His regular teacher broke a limb just before Christmas and hasn't been back yet. Heaven help us, she needs to get well soon. I keep getting notes home that he's 'off.' As if I'm supposed to know what that means. Honestly, by most people's definitions, he's a bit 'off' by design. So, is she telling me he's 'off ' from his usual 'offness'? What am I supposed to make of this?

I figured he wasn't getting his work done, so I've been drilling it into his head every day before school. You have to do your work, you have to listen to what your teachers are telling you to do. And he comes home with the same thing. I finally asked him what's going on? Is he doing his work? Is he listening to the teacher? He has said that he is, and actually, judging from the amount of homework he's been bringing home - no more than usual - I had to believe him. So I finally wrote the sub a note asking for specifics. What exactly is he doing that is so 'off?'

The note came home today that he's needs constant prompting to finish his assignments and that he seems to be in his own little world. He seems to be having trouble focusing.

What on earth is this woman doing in a program for spectrum kids?

That loud thudding noise you hear is my head slamming into the desk.

This is the note that I wrote back: "That is pretty typical for him."

Is she kidding me?

And by the way, on day 4 of the gluten-free diet, I have goofed and put spices with MSG into our dinner. But there has been zero change so far. If anything, Gus has been more hyper than usual. Except when he's in school, then he's just zoning out into his own little world. This life is going to drive me to drink one of these days.