Thursday, November 15, 2007

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!

Saturday, November 3, 2007

Tidbits and a hiatus

Just a brief update...

  • The dentist went much better than expected. Gus tried to run away from the dentist a couple of times because he was afraid of the electric toothbrush, but once the dentist put that away, he actually did rather well! No cavities and he got his teeth cleaned with fairly little drama. Go Gus!!

  • Halloween was, in a word, insane. Gus didn't even eat much in the way of candy. He was just so excited for the day, he was going at warp speed. I couldn't figure out why he was so much more hyper than we expected him to be, but then we discovered that he had chocolate at his school party. The good news is that he was only out of control for a day instead of two like he has been in the past. So he's tolerating it better!

  • Finally, I will be posting very little during the next month as I write the sequel to my novel for this year's NaNoWriMo. Last year I wrote a story and one of the characters was loosely based on Gus (hence the pseudonym here). This year's story will feature him more prominently and continue the adventure. Wish me luck - I'm already 6000 words into my 50000 word goal. I will return to posting when the story is complete!

Thanks for reading!!

Monday, October 29, 2007

Homework and Mondays

Some days, I'll admit, I don't cope well. Some days the St. Johns Wort doesn't work as well as others; it's cold and my knees complain every time I have to walk up the stairs; the kids are feeling more ornery or less cooperative than usual...any combination of things can make the day a blessed heaven or a hellish pit of screaming and insanity.

I was pretty harsh on Gus today. I feel crappy about it, so no need to beat me up - I've got that covered. It was one of those bad combinations and it went all wrong pretty quickly.

He's usually pretty tired when he comes home from school so I let him have a snack and chill out a bit before starting homework. Today I made an apple pie just to give the kids something fun for a change instead of just fruit. They seemed to appreciate it. Then we went up and got ready for homework.

Now Mondays are usually tough because I have a schedule to keep. I've got the get homework done, kids bathed, dinner cooked and eaten and then off to work. It is not the best day for the type of homework that Gus despises or for his lovely sister to decide this is the day to torture him. We got a nice sized helping of both.

Spelling words. He had to trace them and then write them twice more. And there will be a test on Friday. Not something I can really blow off. The boy hates to write. The boy was tired. The boy didn't want to hear noise, but the girl wanted to do spelling like her brother. The mommy was about to ram her own head through the wall.

Here's the thing: She needs to learn empathy and to not kick people when they're down so to speak, but at the same time, he needs to learn to cope and that he can't expect the world to shut down when he needs quiet. Usually we make her stop, but why does she always have to be quiet? Why shouldn't she be allowed to sing if she's moved to (so what if she sounds horrid - she's four!) or to spell or laugh or whatever. It's her home too and all she was doing was being a four year old. She has the right to exist in her home too without being scolded for making noise. But of course as soon as I ask her to stop or she hears her brother getting upset over whatever she's doing, she becomes compelled to continue.

So, I lost it - on him. I ordered him to stop the crying and to deal with it. I told him that the world is not a quiet place (and I was being none too quiet about it) and that he had to cope with the noise sometimes. I asked him what he would do when he's in a bigger class and people were talking - would he tell everyone to be quiet? Would he cry every time someone spoke in class? And what about how he talks when other people want quiet - like at three in the morning when we're trying to sleep? Oddly, he actually responded to what I was saying in between crying more. I really suck at being a mom sometimes.

Then there was the added issue of trying to finish the damned homework. Usually his teacher wants me to make him form the letters properly and neatly. I gave up on that. The last couple of words were a mess, but at least he did them. I'll write a note. Once I got a grip on myself (which I did fairly quickly - not quick enough, but it was a short outburst) I decided to cut all our losses and just get through the best way we could. We have all week to learn to spell 'bicycles'.

We're all back on good terms and I'm dragging my creaky knees out into the cold to work. And I'll just have to hope that tomorrow will be a better day.

Monday, October 22, 2007


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?

Sunday, October 21, 2007

Good News and Bad News

The Good News:

We finally got to go on Gus's class trip to the apple orchard. We arrived at the school much too early - an hour and fifteen minutes before the bus was actually leaving - so I left Gus to his usual routine and drove around with MM. He wasn't pleased with that; apparently he cried when he realized I'd gone. But he toughed it out, we returned and then there was a bittersweet little moment. He decided he wanted to ride the bus with his classmates instead of coming in the car with us. What could I say? MM's silent tears in the back of the car until she fell asleep pretty much summed it up for the both of us.

The weather was kind of the most part, but even the few times that it rained, no one cared. The kids were all having a blast in the maze, on the hayride, picking apples and finding pumpkins. Then they spent a good hour playing in the playground after feeding the goats. It was quite a nice time.

We got some of the biggest apples I've ever seen and came home to make a delicious apple crisp, which the kids both helped with. So of course they got special desserts that night. Later today we'll carve up the pumpkins.

The Bad News:

Gus was in the bathroom washing his hands when I noticed he was taking an abnormally long time. So I asked what he was doing. I heard some mumbled response about a cavity and wanting to brush his teeth. I was doing MM's hair, so I sent my husband to check up on what Gus was getting into. It's never a good idea to leave him unattended in a bathroom for long; all of the dislodged towel bars and toilet paper holders can attest to that.

"Umm...I think Gus is getting a tooth," hubby says, completely perplexed.

"How can that be?" I asked, "he hasn't lost any yet." But then excitement won out and I rushed Gus into better lighting. "Oooh! Maybe you're losing a tooth!"

He showed me where a bottom incisor is in fact starting to erupt. But, the baby teeth are as firmly planted as ever. Knowing that this could not possibly be a good thing, I did what I always do: ran to the computer. Apparently, it is possible for the adult tooth to 'miss' the root of the baby tooth; and therefore it grows behind or next to the baby tooth instead of reabsorbing the tooth so the baby tooth can fall out. When this happens, the baby tooth may have to be pulled out to make space.

I want to scream, "why can't this kid ever catch a break???" but I won't because he's had many breaks. I hate to put him in situations where he's going to be in pain and freaked out. He's a brave kid, but how much is he supposed to endure? He already has trouble with simple tooth brushing and hates to have a doctor even peek in his mouth with a flashlight. This is why we've never made him go to the dentist. But there's no help for it now. He'll have to go and now (partly because of my own inability to challenge him) his first experience with the dentist may be a negative one. I'm hoping that I'm wrong and that the tooth will miraculously loosen on its own, but we'll have to see the dentist anyway. Given my most recent freakish encounter with the dentist (he thought I had an extra wisdom tooth, which turned out to be more of a third root on the normal wisdom tooth), I'm not feeling too optimistic.

Just a typical Sunday on the farm.

Sunday, October 14, 2007

Literally speaking

Gus can be very literal minded, as can all kids, and sometimes he takes it to the most endearing extent. This was a conversation we had yesterday morning:

It was pretty frosty in the house, and we have no pellets to make a fire, so I tried to tell him to go upstairs and get his robe. Of course he ignored me. So, I said, "Okay, now fly upstairs and get your robe so I can help you put it on."

He looked at me, head to the side. "Um...I think I have to walk."

Taking advantage of my momentary ambush, I replied, "No, no! You have to fly up the stairs!"

"It's too far," he whined. Of course it was; that's why I didn't go myself.

"That's why I told you to fly - much faster." So hard to keep a straight face at that point.

"Do I have to pretend to fly on top of an airplane or something?" So literal minded, this one.

"Nah, just..." and here I kind of put one fist up, ala Superman, and mimed bounding into the air. "Whoosh!"

And so he did. He got his robe. He also forgot to come back downstairs, so I had to make a trip up anyway, but who cares. It was fun while it lasted.

Yet, at other times when some children would let their literal mindedness upset them, Gus is just fine.

Our neighbor was putting up a six-foot Winnie the Pooh and Tigger Halloween decoration as the kids ran around it playing. Gus kept poking them, so we joked that if he kept it up, the vampire-Tigger was going to eat him up. Gus laughed at that; the neighbor's four year old started to cry.

"I don't want Tigger to eat him up!" She was really quite inconsolable. This is the same kid who can watch Pirates of the Caribbean without blinking twice.

They really are fascinating beings, children are.

Monday, October 8, 2007

Whose Fault is it Really?

Gus decided to go pay a neighbor a visit this evening. Under normal circumstances, this might not be such a big deal. The problem is that we don't really know these neighbors and he barged into their home uninvited.

This hasn't been a problem in a while. He used to run into our old neighbor's apartment across the hall, and when we first moved here, he went into our next door neighbor's house. But he hasn't done that in about a year.

I want to throttle someone, but who? Do I blame the six year old who was just curious about what the people down the way were watching on television? Do I get mad at the father who was grilling outside and was supposed to be watching his son? Do I kick myself in the butt for allowing Gus to go out, when I know my husband can't multi-task, when we already had an incident earlier when my husband was supposed to be watching the kids, while I was inside mashing sweet potatoes? Who's really to blame here?

Or maybe I should just be grateful that our neighbors aren't maniacs and didn't try to hurt my son or scream at him (like the guy next door did last year) call the police or some other reaction that could have made this situation much worse.

Gus has been punished and is losing all video game and computer privileges for three days. I told my husband that I thought he should lose his gaming rights for three days as well; he was supposed to be responsible while Gus was outside or else he should have sent Gus in until he could pay attention. But he apparently does not agree.

So what I've learned today is that I cannot turn my back long enough to pee or to make a side dish for dinner.

And they say that having a child with special needs can put a strain on a marriage. I can't imagine why. By my view, it's not so much the child or the special needs that are the problem.

Please comment and let me know: am I wrong and/or crazy?

Sunday, October 7, 2007

A Born Leader

"Titans, go!" Gus shouted in his Robin costume and then took off racing across the room, probably after the baddest of bad guys, Slade. His sister, dressed as Starfire, tore after him. Amusingly enough, the three other kids did the same. He leads, they follow. Not bad for the kid with the poorest social skills of the lot.

We went to a Halloween themed birthday party this afternoon, and I'm so proud of Gus. The room was full of people, but he managed himself like a champ. He only attempted to leave the room once. The rest of the time he ran with the other children, took part in games like Duck, Duck, Goose, and was accepted as one of the crowd. It was awesome to see! Heck, he knew the rules to Duck, Duck, Goose better than I did.

He did not have a single meltdown at the party. The diet went right out the window, but everything was fine. For a day, treats and sweets won't kill him.

Even toward the end of the day after we were home, his only meltdown was when the computer started acting wonky, and I think that was more hunger than computer frustration. How do I know this? Because he sat down for dinner without doing his usual laps around the living room. That only happens when he's famished.

Anyway, it was a good day and the costume has survived enough for Halloween.

Wednesday, October 3, 2007

The Problem with Pragmatics

Pragmatic, or social, speech is a problem for Gus, and this is pretty typical of individuals on the autism spectrum. No big news there. Because of his difficulty in grasping the different connotations of words and because of his very literal mind, I now have a child who is terrified of Tootsie Rolls. Honestly I don't know how we got there, but there we are.

It all started two days ago. We have a prize box where the kids can pick prizes from when they received enough stars on their charts for good behavior. Any manner of thing can end up in that box, such as the Tootsie Roll push light that someone had given Gus at the end of last school year that had ended up in a cabinet. So Gus chose the light for his prize and I thought all was well.

That night, he asked, "What's a Tootsie Roll?"

"It's a candy."

"Is it good for you?"

"Well, no. Candy isn't really good for you."

I should have seen the slope getting slippery, but it was late and I just wanted to get his brushing and compressions done. When he asked what would happen, I should have thought longer before I spoke.

"Well, too much candy can make you sick and it can give you cavities."

Isn't this a typical response about the evils of candy? Ah, but I'm not dealing with a typical child, am I?

"If I eat a Tootsie Roll, I'll get sick." The bottom lip started to quiver, the eyes started to water, the breath started to hitch. Within a second, he was full out crying. Stupid mommy. "I'm gonna diiiiiie!"

Of course all my attempts at damage control were pointless because once he latches onto something with that wonderful perseveration of his, it's all over. But I had to try.

"You won't die from eating a Tootsie Roll. I said that if you eat too many you might get a tummy ache or cavities. You won't die from those."

"I'm gonna get sick and die!"

I tried everything - even making funny faces to snap him out of it. Finally, the faces somewhat worked. He told, through sniffles, that he didn't want to be copied. We were saved from a major meltdown because of my extraordinary facial control.

I thought the drama was done, and obviously I'm still a stupid mommy.

We went through almost an identical scenario tonight, except this time I didn't let it go on so long. For one thing, my patience was much shorter tonight. Finally, I asked, "Do you want a Tootsie Roll? Is that it?"

"No! I'll get sick!"

"You won't get sick. Do you want a Tootsie Roll?"

"If someone gives me a Tootsie Roll, I'll get sick!"

"Did someone give you a Tootsie Roll?"


Now I was wondering if there was some talk of stranger danger or something going on at school to bring this up.

"No one's going to give you a Tootsie Roll."

"But if they put it in my mouth I have to spit it out or I'll get sick."

"Okay." I didn't have the energy to debate it any more. It was bad of me, I'm sure. But thankfully, he let it drop and he went to bed. No tears tonight over the candy.

Then I just had to console him over the Pirate story he asked me to read that set him to tears. I can do nothing right this week, apparently.

Tuesday, October 2, 2007

Grass is always greener

I know that most people with children on the spectrum would love nothing more than to have their children speaking. And honestly, I wouldn't want Gus to not speak because then I'd miss the wacky jokes and hilarious observations he makes. However...

There's always a 'but,' isn't there?

I don't know if he's doing it more, or if my nerves are just more sensitive than normal, but the constant noises and chatter are driving me batty. Almost from the minute he walks in from school until the time he falls asleep, there is a constant stream of sound coming from this boy. It's often accompanied by running through the house (like he is now). There is literally a cacophony: words, words, words, engine revving noise, earsplitting scream, engine revving, words, words, maniacal laughter, words, scream, engine...on and on. And by the way, the words are either unrelated to each other or are slightly varied repetitions of each other. Here's a for instance: I would like a chicken sandwich...I would like a macaroni sandwich...I would like a peanut butter sandwich...I would like a naked mole-rat sandwich...I would like a knuckle sandwich...I would like a trampoline sandwich...

Sometimes I can tune all the sounds out - I have to because noise is a bit of a sensitivity for me. To much of it makes me nuts. It helps in a way because I'm able to really empathize with him when certain sounds are upsetting him. But at times when I am trying to get him to focus, like when we are doing homework or eating dinner (or when I'm trying to explain to him why he can't put the chair upside down on the stairs and he's ignoring me) it's extremely frustrating to have him just droning on constantly.

Heaven help me when MM decides to chime in and rev him up even more. Then we get a situation like the other night when I finally just screamed, "Why do I bother to say anything in here?" I really just wanted to get through dinner. I don't feel too badly about yelling - I don't think anyone heard me.

Tuesday, September 25, 2007

My life is a comedy of errors

Let me preface this by saying that in all the time my son has been in school - several years - I have never had to have my emergency contacts contacted. Ever.

This morning Gus woke up and sounded like he was wheezing slightly. He's had a cough for a few days. Nothing major - he gets one every year around this time. So as usual, I sent him to school & asked the teacher to let me know if he was in fact wheezing. I planned to take him to the doctor after school.

Now, I've arranged my schedule so I am only working 1 morning during the week, and my classes are only 90 minutes long. I typically turn my cell phone off during class - it's yoga and kind of expected. I pretty much figure - what could happen in an hour and a half. Plus, the school has the studio number anyway. To top that off, my husband was home sick today. You already see where this is going, right?

My class ends at 10:30; school calls my cell at 10:00. They call 4 times. They call the house; DH is out getting his car inspected. For some unknown reason, I neglected to give the school his cell number. They also tried the studio, but my boss, who was there, didn't answer the phone. Er...okaaaay. Now we're into the emergency numbers. Obviously, we are neglectful parents.

First emergency contact just misses the call by minutes. Probably out emptying the garbage or something. As she is trying to call back (and getting busy signals) the school gets the second contact, who is also home sick, with a 3 year old. She leaves to pick up Gus while first contact finally gets through. She is now worried why no one can reach me.

Right after class, I get the messages and call the school. After several busy signals, I finally reach the social worker and find out that someone (she doesn't know who specifically) is on their way to get my son.

After ripping several hairs from my poor, distressed head, I finally pick up Gus from my cousin, take him to the doctor and guess what??

He's FINE!!!

He's got a cough.

Yeah, yeah, protocol, blah blah.

A bit stressful today. But I've learned my lesson - the ringer on my phone stays on, period.

Sunday, September 23, 2007

Blind leading the blind

"Which way is right?"

This is not the question to ask someone who routinely mixes up lefts and rights, especially when facing said directionally-challenged person.

I'm not totally incompetent about lefts and rights. The problem is that when I teach yoga, as I was taught, I mirror the class. So, I have to say "right," but use my left hand or leg and vice versa. It is a constant source of amusement for my students and bemusement for me. It's particularly interesting when one part of the body is going one way and another is going the other way, like when we're twisting. I'll admit, when it comes to twisting, I cheat.


Gus was trying to engage me in his game and I wanted to respond, but the explanation was too long and he would have lost interest if I made it too complicated. So how could I explain that it depends which way is right? Did he mean my right or his right? Should I have even gotten into all of that? The easiest thing would have been to tell him his right, which was actually my left. What did he care about my right? Why couldn't he just have asked for north, south, east or west? Those are fixed directions and I have them memorized in relation to our house. There's no ambiguity there. Hm...his right would have been north and my right would have been south...

This whole rationale spun my brain right into a knot.

Apparently I took too long to answer; he lost interest. But then, miracle Sunday, he came back! And he snuggled his back against me. "Which way is right?" Easy-peasy, my friend.

"It's that way."

Friday, September 21, 2007

No rest for the weary

A squeal. Thump-thump-thump. A ghostly figure standing in my doorway. I roll over to check the clock; it reads 12:30. Shit. I sit up. With no invitation needed, he shambles across the room and climbs into the bed.

A slight whimper. Did he have a nightmare? A cough. Maybe his allergies are bothering him. I have no idea why he's woken up, nor do I particularly want to at the moment. It is not the appropriate time to ask questions I won't get answers to. My eyes can't possible stay open another second. I snuggle a bit and pray that maybe tonight will be different, and he'll go back to sleep. Mothers seem to have a unique wellspring of hope, or perhaps are just good at denial. In any case, I cross my fingers and toes, and close my eyes.

Humming. Please, no.

Leg shaking. No, please, no!

He starts talking to the darkness. Sorry babe, no sleep for you tonight.

My husband takes Gus back to his room and tries to get him back to sleep in there. I can still hear him, through two closed doors. What can anyone possibly have to talk about at this hour in the pitch blackness?

I remember the advisory letter that came home from school about the child who had a man following her and the white unmarked van he was driving. These thoughts are not helping my cause in the least.

I finally give up trying to sleep, get out of bed, grab my laptop and a book and make a half-hearted attempt at doing something constructive. It is now 1:30 and he's still going strong. Bless my daughter's ability to sleep through the noise. Dear husband isn't faring as well as he usually does, and I feel badly about that.

Only one person is online and not someone I particularly want to chat with, but it's better than thinking about predators and abductions. The laptop gets too hot on my legs, so I switch to reading Wuthering Heights. It's not enough to hold my attention and this is a good thing. Maybe now I can go back to sleep. With a click, the lamp is off and I lay my head down.

I desperately try to ignore the muted voices coming from down the hall. Anger is starting to prickle beneath my skin. Enough is enough. I go to rescue hubby and scold Gus. If he wants to stay up all night, fine, but we need to sleep, so be quiet already. There really isn't much patience to be had at 2:30 in the morning. With a hug and a kiss we leave the room, wondering if he will stay put or follow.

Now neither of us can sleep, and Gus is still delivering his dissertation. Finally somewhere around 3, everyone drops off. But not to worry, one alarm is set for 5:00 - we won't sleep too long. That one is violently silenced. The next one sounds at 5:30. I don't even recall hearing it. I wake to the sounds of Dear Husband showering and preparing for work.

Gus has school today, so I must drag myself out of bed - no voice, no balance, no working brain cells - and then try to rouse the little host with the most. He has the nerve to ask for another 8 minutes. "Sorry, buddy. If you want to sleep, you should try doing it at night with the rest of us."

Monday, September 17, 2007

What the frack?

The universe is just filled with irony. I'm pretty convinced that God/Goddess (or whatever your name for that all-powerful deity/energy is) has a kind of twisted sense of humor. My rationale for this is if God/Goddess is in everything, and Black Comedy (as a genre) exists, then God/Goddess must also be present in Black Comedy. It's just His/Her little funny.

I took Gus to the geneticist today. Almost all the preliminary test they ran were negative or inconclusive. But they did turn up with the damnedest thing: his cholesterol is high. What? Now if I had a kid who ate like the majority of the kids in this country, existing on McDonald's and all manner of unhealthy, yet fun, swill, I wouldn't be so shocked. But then there would be no irony in my life and where would the fun be in that? He's on an all natural food, low sugar, very healthy almost to the extreme, diet. But he has high cholesterol. He doesn't even drink whole milk for heaven's sake! Only low fat for this kid. Are you kidding me? Can you head the wood of my desk splintering from the repeated head bashing I'm doing at the moment?

So we have to undergo yet more dietary changes. And as if it weren't funny enough, our choices are to start eating low fat everything else that isn't already. But those things tend to have either higher sugar or salt contents (diabetes or high blood pressure, anyone?) and tons of additives and preservatives. Or we can stick to the more expensive natural food, low sugar diet and keep the high cholesterol. I'm being partially facetious - I'm sure there's a happy medium, but right now it doesn't feel like there is. Right now I feel like no matter what the hell we do there's just no winning.

Of course, no cake is complete without the icing.

One of my worst fears has always been that one of my kids would get burnt with hot water from tea or coffee. This stems from having to take my ex-boyfriend's toddler son to the hospital because his crackhead grandmother left her tea at the edge of the table. The child had third degree burns over most of the front of his body, including his penis, and the skin had to be peeled away so they could dress the wounds. His mother was nowhere to be found and I held the poor screaming child while they did this. I was traumatized probably almost as he was.

Do I even need to go on? We let the kids stay up to watch a show that they've been itching to see. Toward the end I put some water on for tea figuring that by the time they were in bed it would be ready to drink. So when the kettle whistled, I asked my husband to pour it for me because I had the kids on the couch on either side of me, and I couldn't really move. He poured it and started to bring it to me, like he usually does (although how he thought i could hold hot tea in that position is still beyond me). For some reason, Gus decided to run toward the kitchen just as my husband was coming out. Cue the collision soundtrack, kid screaming, etc., etc.

Luckily, the burns weren't bad, but they did go across his shoulders and a drop got on his thigh. It could have been much, much worse, I know. The tears didn't last long, and thanks to an ice-pack and some burn cream, he is now sleeping peacefully.

This had to happen today of all days? I think some divine being is having one wicked laugh at our expense this evening. None of this is tragic, just bizarre and annoying enough to make me wonder about the universe. I wouldn't be surprised in the least if an alien ship landed on my front lawn tomorrow morning just before Gus's new bus came to pick him up. I really wouldn't.

Sunday, September 16, 2007


we took the kids on a mini-hike yesterday. Just through a path that runs around the lake and through the woods. It is mostly frequented by teenagers looking for a place to drink or smoke or... whatever... in peace. It had rained during the early part of the day, so I put some Wellies on the kids, partly because Gus hates to have wet clothes on and partly because I can't stand to have to handle wet socks.

Gus has been in a very hyperactive state lately. I think it's a combination of my not doing his brushing and joint compressions when he's not in school; part of it is sleep deprivation. He was up at around five a.m. yesterday and this morning. So while we were on our little outing, he wanted to run. But Wellies aren't really meant to run in. They kept sort of sliding off his feet and he'd keep going with his foot in the top part of the boot, looking like he had broken ankles.

Visuals like that I do not need.

After I told him to walk several times, I took a good look at him walking with my husband up ahead. He's kind of like the Scarecrow from the Wizard of Oz. He has that same wiggly, wobbly, loose-jointed gait. It was cute and amusing and a somewhat disturbing all at once. It amazes me that someone who has such laxness in his body can a) be so strong, and b) have such incredible balance. We crossed over a makeshift bridge over a stream: a broken metal slide, a plank of plywood, a couple of beams and a narrowish log. He bounded across without a second thought! Twice!

At one point, he ran right out of his boot and kept going.

The geneticist mentioned something about the loose joints and hyper-extensiveness. I have it too, so watching Gus actually gave me a bit of insight to what I used to look like before my layers of fat lessened the effect. Anyway, the doctor said that loose joints could have some relation to some sort of heart disease later in life. I don't see the connection, but I guess I'll find out more tomorrow when we see him.

For now I won't worry about it and I'll just continue to watch my little scarecrow in awe.

Friday, September 14, 2007

Mayhap it will be okay

We spoke to Gus about the new school and today took him to see it. He seems excited to be going there and I think he understands what's going on. He was talking to his counselor on Wednesday about it, and when we got to the school this morning, he went right in, sat down and played with a Leap Pad. He joined the group for an art class while I talked to the teacher.

It seems that he may still be one of the higher functioning kids in the class - the other boys didn't seem extremely verbal, but from one day, I can't really tell that sort of thing. The teacher says they are.I just have to believe that he'll be fine.

I've been noticing some things that are worrisome, like his posture. He was slouching in the art class and he's generally been very focused on video games and television and not wanting to go to school. So I'm hoping that the change will reignite his interest in school.

I spoke to the social worker, the Principal at the old school and called the district. The Principal's office called back and said that he may be able to make the switch as early as Tuesday if they can get the transportation worked out. I'd be very pleased if that could happen. Very pleased indeed! I don't want him to linger at the old school - it would only serve to confuse him.

So, hopefully all will be well. I'll keep ya posted.

Tuesday, September 11, 2007

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?

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.

Sunday, September 9, 2007

More wondering about meds

I had a chat with my cousin yesterday about her son. He started a new school this week also, so I just wanted to check up on how he fared. He did pretty well, but she told me something that I was previously unaware of. On his first day of school, he didn't eat. I thought maybe it had been the new environment, but she told me that it was because of his meds. Apparently, the medication has the side effect of being an appetite suppressant as well. That could be a problem. So she kept him off of the meds his second day and he ate just fine, but was also off the wall. So she's settled on a half dosage during school time.

I find this to be a scary thought. Gus eats like a maniac, but you'd never know it. He's skin and bones. I couldn't imagine what would happen if he lost his appetite. So this gives me even one more reason to not want him on medication.

It's not an immediate concern; he does just fine at school without anything, and sending his lunch with him to school has so far worked out well enough.

It's as if that word, "medication" is just looming off in the darkness, a predator biding its time before it decides to strike. I know it's there, but there are only so many escape routes, and it scares me. The best possible outcome would be for me to wake up and realize that it was just a frightening dream. Not a bad one, just a dream featuring a parade of threatening imagery. I wouldn't trade my Gus for anything, but sometimes the other stuff, I could really do without.

Friday, September 7, 2007

First Week

So Gus went back to school this week and all went well. He's got a new teacher which concerned me because I was worried about the adjustment. He seems happy though. It helps, I think, that he got all his old aides. No homework yet, but I suppose that's because it was a short week.

The diet may not be too much of an issue. I've been sending in his lunch and breakfast, so I haven't had to worry about what the school is giving him.

All he's really said about school is that, "First grade is hard work." The poor kid's been exhausted.

We went camping over the weekend just before school started and he was so happy. There was a fallen tree that he spent most of his time climbing - better than any jungle gym. He did well with not wandering and he helped with the wood gathering a bit. He thought that was hard work, too. He doesn't know the half, but I found it funny that he commented.

And his blood work came back negative. This means he's got no syndromes exacerbating his issues. And there are no toxic lead levels. I haven't see the reports, so I can't say there's NO lead in his system, but not enough for a doctor to be concerned. I'll meet with the doctor on the 17th and then I'll know more.

So that's about all for now. Nothing particularly insightful or (probably) interesting, but just what's going on.

Friday, August 31, 2007

Little Charmer

On our way to the supermarket this afternoon, I was playing a CD for my kids. MM has to listen to the same two songs, then I usually get to skip to a song. When Gus is in the car with us, he gets a pick, too. When my song came on, I was singing along, and MM started singing (very loudly) something completely different. I explained to her that it wasn't a very nice thing to do because she doesn't like having her music interrupted. This was the conversation that followed:

I said, jokingly, "What's the matter, you guys don't like Mommy's singing?"

Gus replied, "We's like a lullaby."

"A lullaby," I asked? He normally tells me to be quiet when I start singing.

"Yes," he said, "But more peaceful."

"Well, you're charming!" I said.

If I wasn't driving the car I would have fallen over laughing and then given him the biggest squish!

He and his sister then proceeded to make me want to rip my hair out, but that's a story for another day. I'll choose to focus on the positive for now.


There are nice people in the world. I’ve probably met both of them, but it’s good to know that they do exist.

We took the kids to the lake today, probably for the last time this summer. It wasn’t very crowded: just us and a woman with a brood of girls from ages ranging (I’m guessing) from about six up to perhaps thirteen. Clearly they were not all hers. And they were not all very nice, either (for that whole story read my post in Quite Frankly).

But we’re discussing the nice guys right now, the two lifeguards who had the goodness of heart to be kind to a slightly quirky little boy. My mother-in-law pointed out that Gus is a very likable and sweet child, and of course I agree, but that doesn’t always stop people from giving him looks or ignoring him because they don’t understand his means of communication or being flat out mean because he’s making those engine revving noises between each thought that excites him. Sometimes people are not so compassionate, but the lifeguards were, and I will never forget that kindness.

Gus had decided to take his boogie board into the water for a spell, just after the lifeguards had decided to take a dip. This is very unusual for our lifeguards; we rarely see them in the water. At first, Gus was just hanging out, trying to climb on the board and splashing back into the water. Then he got the idea in his head to strike up a conversation with the lifeguards. Now, I couldn't hear the entire exchange, but I know there was some talk of different Disney movies, and I can extrapolate the rest. Gus probably asked if they'd seen each of the movies that he's seen, probably said that he's seen movies that he hasn't, and more than likely told them all about the upcoming live show at Disney World featuring the Choo-Choo Soul and the Imagination Movers. I'm fairly certain that Gus inquired as to why they were in the water at all as well. Let me just point out that one of the guys is probably going to be a senior in high school in a few days and the other is heading off to college.

Instead of blowing him off to finish their discussion of Halo III or whatever it is that boys their age talk about, they spent no less than an hour hanging out with Gus. After a while the older of the two even started holding the board so that Gus could get on and fling himself off. They totally engaged him and it was just the most awesome thing to watch. There was no impatience, no raised eyebrows or cocked heads when he did the little humming thing he does sometimes. The three of them were like old buddies.

I got in the water after a while so that my father-in-law could keep a closer eye on my daughter, and the boys chatted with me on and off, and didn't push away when Gus tried to interact with them some more.

They really were lovely young men and I wish only good things for them. Some people just deserve it.

Wednesday, August 29, 2007

Back to School Shopping

We did our back-to-school shopping and I have to say, I was totally floored at how well Gus did in the store. I normally dread taking the kids anywhere near a store alone, but school starts next week and we had nothing better to do, so I tried it. I thought it would give me an idea of how Gus is doing with the sugarless diet. Very well, apparently.

Usually taking the kids to a store means constant squirming, trying to run off, whining, crying - everyone knows the drill. Before we left I ran through the two main rules: stay with mommy, stay in the cart. I repeated it just before we got out of the car. Then we struck gold and found one of those double carts - fun carts, my kids call them. They're much more comfortable for he kids and much easier than having to keep one sitting (usually Gus although he's a little big for the front of a shopping cart) and holding the other's hand. He didn't try to get out of the cart once. I even had to unbuckle him to check the length on some pants and I left him unbuckled for a few seconds while I looked for a different size, and he still didn't go anywhere. That is a MAJOR accomplishment on his part.

His MM started getting antsy before Gus did, but when she started whining and having a fit about not getting something or other that she wanted, he didn't react much. In the past, I would have had a double meltdown on my hands - a triple meltdown once I started to lose it.

As it worked out, she calmed down relatively quickly and we got out of the store without incident.

It's kind of funny that I was reading Whitterer on Autism (another blog and one I highly recommend) earlier and she posted about feeling like her son was a different person after he started taking medication. I'm feeling something similar with Gus. It's odd not to have him running around like a lunatic, not having to struggle with him in a store until my arms want to snap off, or to see him so calm I have to keep asking if he's okay. It's quite surreal. If just removing the sugar from his diet can keep him this level, I sort of wonder what he'd be like on medication. I'm not quite ready to find out, but these have all been very interesting developments.

Tuesday, August 28, 2007

Not enough empathy or too much?

Many babies, at the moment of their birth, come out of the womb with their eyes scrunched or swollen shut. Gus came out with his eyes bulging out of his head hyper-aware of everything going on around him. Then he sort of shut down for about forty-eight hours. We were scared because he wasn't crying or waking up to eat; he just slept.

I've heard it said that kids on the spectrum can be unaware of how others feel, that they can lack empathy. I think that Gus is exactly the opposite. I think he is too aware, at least sometimes, of how people are feeling and maybe that contributes to his shutting down or melting down. Here's a prime, very common example. When MM starts crying dramatically about the injustice of having to eat dinner, and then gets fresh, and then gets sent to her room, Gus deteriorates with each stage of the game. He'll try to tell her to eat her dinner, and when that doesn't work, he'll get the deer-in-headlights look on his face. He knows what's coming. When her tantrum hits its peak, he loses it - not tantruming along with her, but the most heart-wrenching, pitiful, teary-eyed crying that I've ever seen. Sometimes he'll even say he's heartbroken. If one of his classmates gets hurt, Gus cries and frets until he knows they're okay. He's very aware of what other people are feeling even if he doesn't always get what they're saying or what their body language means.

I wonder about his level of empathy and it pains me to think that I'm having a negative effect on him because of my own issues. Since he's been out of school, he's become more and more lethargic. Coincidentally, I've been fighting a mostly losing battle to keep my own depression at bay. It dawned on me that he might be picking up some bad mojo from me now that he's home with me all day. Or maybe that's the depression talking and trying to make me think that something else is to blame on my shortcomings.

Well in the meantime, I suppose I can be glad that I know my children are both sensitive to the needs and emotions of others, and I should be fairly appreciative that he hasn't been tearing up the house since he's been home.

Monday, August 27, 2007

Why we are still home on such a beautiful day

This time of year is tough. Lots of people are away on vacation and I've got two kids trapped in the house with me. The sky is clear for a change, the temperature mild, and yet here we three are, stuck in the house together. The obvious thing to do would be to pack some snacks and a couple bottles of water, and take these guys to the beach or to the park or for a hike. When I'm feeling particularly brave, I do that - when I'm at my most alert and energetic and focused. But on days like today, when I'm pretty alert, and more energetic than I was yesterday, but still not feeling very frisky, and not very focused or grounded at all, going out is a scary thought.

No one would understand if they had never gotten the phone call: "Hello, Mrs. _____, this is Officer _____, and let me first assure you that everything is fine...." Except that everything isn't fine, or at least it wasn't always fine or Officer _____ wouldn't be calling.

Gus was lost once. He was with a family member who had taken the kids to the park - MM must have been about two, so Gus had to be four, or about to turn four. The family member picked up MM and then went to return a shovel or some other such thing to a mom, taking his eyes off of Gus for a second. But that was all it took. Gus took off, left the park, and was gone.

Twenty minutes or forty-five minutes - I have no idea how long he was missing. No one called me - not even the family member (which in retrospect, was probably the best thing for his health at the time) called me to tell me that Gus had disappeared. The call came after the police found him and had returned him to his caregiver.

Gus, it seemed, had left the park, walked about a quarter of a mile,or maybe half a mile, had gone into a building garage where someone had apparently just pulled out, and gotten stuck inside when the door closed. Another resident of the building (I hope she's hit lotto by now or has been blessed in some other miraculous way) found him and called the police who were already searching for him. I think we were all being watched by some powerful angels that day.

So now, it is very rare that anyone takes the two children out alone. I've been pretty insistent about a one-to-one ration when the children are out of the house. Even when we had the babysitters this weekend, there were two people here because you just never know with Gus. He just gets these ideas in his head and acts.

This leaves me with a dilemma. I know I watch my kids more carefully than anyone else, but what would happen if Gus were to get one of those impulses and take off? I know my own limitations and I've never been the swiftest at acting reflexively. Do I go after Gus in that instance, or grab MM and hope she's not going to put up a fuss (unlikely) to go and chase after him? I certainly couldn't leave her to go after him.

This is the reason I'm still sitting in the house at noon. We've already had lunch and I'm wracking my brain for the next thing to do. I suppose we'll play a board game. Perhaps if we're very lucky one of the neighbors will come out with their kids. If I see these guys getting really antsy, I may have to go and knock on some doors. It's been a long six hours that we've been awake, and the coming six, until Daddy comes home, are not looking like they're going to go any faster.

Sunday, August 26, 2007

Another Step Forward

Last night, for the first time ever, we went out and left the kids with non-family babysitters. Yes the plural is intentional; I'm not totally insane. Gus's godfather and his wife came over, had dinner and then put the kids to bed. I am pleased to say that neither of the kids gave them a moment's grief and all was well.

Now, I wouldn't have left them with just anyone. Our friends both have training and lots of experience in dealing with special-needs adults - it's what they do for a living. So I felt confident that if Gus had a meltdown or went into a little hyperactive burst, they wouldn't freak out. As it turned out, Gus did do a bit of climbing and racing through the house crashing into the walls, but they put a stop to it quickly and in a way that I thought was very clever. It wouldn't have worked if I tried it, but that's because I'm Mom and they know me well enough to know what my threshold is. But a new person, well, she might not put up with much, so best not to push her. Kids are just so brilliant.

MM tried to weasel an extra story, but godfather shut that down easily too. She said she needed two people to tell her a story; he replied that he told her two stories so it was the same as two people telling one story each. I think by the time she reasoned that out, she was probably asleep.

I doubt we'll be going out like that again any time soon, but there is a wedding (husband's family) that we'll need babysitting for very soon. So thank goodness we've found someone!!

Saturday, August 25, 2007

Newsday article on autism

This link was sent to me by another mom whose daughter has autism. You may have seen it already, but if not, here's the link:

New Understanding of Autism

I read the article, and I intend to read it again. While it's confirming what I've suspected for a while now, that there's a genetic component to autism, it's a bit disturbing that the 'blame' seems to be shifting to mothers. The article mentions how mutated genes get transferred by moms. Great, thanks. Because I don't beat myself up enough every time my son does something like throwing a video game across the room (which he just did two seconds ago) because he's frustrated instead of asking for help.

I'm sure that the researchers and the writer aren't really attacking mothers, and the more answers are uncovered, the better. I'll work on not taking articles like this personally, but at the moment, it's not making me feel too good.

Thursday, August 23, 2007

A trip to the zoo

We took the kids to the zoo today and Gus did surprisingly well, even compared to our last trip there a few months ago. Last time we were there for his school trip, he had some trouble waiting for the group to assemble and for lines to move, etc. There was about the same level of crowdedness. Today he didn't try too hard to run off, he didn't have a single meltdown in the zoo, and we were even able to go in some of the houses: the monkey house and the nocturnal animal house. We also stood in line to wait for a carousel ride, which was a major feat. He still wanted to race through each exhibit, but when asked to wait for his sister to catch up, he did. I could see him starting to lose his self-possession after about three hours, but that's a pretty big stretch of time, all things considered. He sat for lunch and a story hour (which was really awesome) as well. They had a great time.

A couple of things that I did to try and make sure we didn't have a disaster - I made sure to pack plenty of snacks - grapes, watermelon, apples and some animal crackers that are very low in sugar (three grams). The kids only had water to drink - no juice. I think those things made a big difference for us.

Monday, August 20, 2007

The Study - an update

Five full days after we've started our little private study, we've seen an interesting occurrence, and have also had our first heated discussion on how to interpret what we're finding.

First, the good news: I've noticed a definite reduction in hyperactivity over the past five days, even on the days that Gus didn't really go out and burn off any energy. He hasn't been lethargic, and there have been brief, minor spurts of bounciness. Then yesterday, we gave him one of those fruit bars (like a Nutrigrain Bar, but with unprocessed sugar) that had about fifteen grams of sugar and just before that he had two oatmeal cookies with about nine grams of sugar. We were at the beach and the kids have gotten into the habit of having cookies for their snacks when we're there (not provided by me, by the way). About two hours later, he was zooming through the house like the Concorde, and that lasted for at least an hour.

I took this as a pretty clear indication that the large amount of sugar revved him up to that manic state, but my husband seems to think that it's inconclusive and we'd need to give him a big dose of sugar again to see if we get the same results. I can see the logic in that, but I don't think that getting Gus excessively worked up, just to see what will happen, is an acceptable idea. Hubby thinks that an hour of manic behavior (which by the way can also be dangerous for Gus - he often runs and slams himself into the wooden or glass doors, or starts jumping and climbing on chairs) isn't the end of the world. Maybe not, at least until he breaks the glass or goes sprawling on his face and ends up in the emergency room.

so, we continue to observe. I've got to find some snacks to take with us later this week for our visit to the water park, because I know it will be a challenge to keep him from all the crap that will be available. Wish me luck.

Saturday, August 18, 2007

New Yorker article

There's a great article in the August 20th New Yorker written by Tim Page entitled Parallel Play. Tim Page is a music and culture critic and has Asperger's Syndrome. He shares his experiences growing up with Asperger's. It's pretty fascinating and I highly recommend it.

Friday, August 17, 2007

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.

Thursday, August 16, 2007

These things make me sad

My mom is visiting for a few days, and yesterday she invited a couple of her friends over for the day. One of her friends brought along her six-year-old granddaughter. She was a lovely little girl and got along well with MM; Gus entertained himself for the most part with his video games. After lunch we all went to the beach. As we were packing up to leave the beach, Gus got a little restless and started running back and forth. We had to redirect him several times.

Now, this is a perfectly normal routine for us. We just get everything packed up as quickly as possible and just try to keep him out of trouble or from getting all wet again - no big deal. MM and her new little friend were sitting quietly waiting for us to leave when the little girl asked, "What's wrong with him?" Insert big sigh here.

I know she's only six, and she certainly meant no harm. And six-year-olds aren't typically discreet, so of course Gus was standing two feet away just as she asked the question. I tried to explain in as simple terms as I could that Gus doesn't always understand what we're telling him to do or he doesn't always know when we're speaking to him if he's not paying attention or he can't always help not following directions although he tries to listen. Then she asked, "What's that called? Is it called something?" And I answered her honestly that he has autism. She let it drop and we all went on our merry way.

But it made me sad - not so much that a six-year-old asked such blunt questions, but more that I tend to project forward. Will kids still ask those blunt questions when Gus is ten or fourteen, except in a less benign manner? Will those questions be directed toward him and will he be hurt by them instead of oblivious to them as he is now?

The hardest part of his condition for me has always been the worry of how his peers will treat him when he gets older. I know what it's like to be teased, to be threatened, to be a social reject. That wasn't always the case for me, but I definitely had some very traumatic experiences at different periods of my life.

I know I can't shield him from the world and that even if he was 'typically developed,' there are no guarantees that he wouldn't have those types of experiences. Yet as his mother, it's natural to want to shield him, isn't it?

Wednesday, August 15, 2007

A Study of Our Own

After the nuttiness earlier this week, DH (dear-husband) and I decided to do some tracking of our own. Since we've agreed that sugar is never a good thing for Gus, we're removing it from his diet for a period of at least two weeks. But the only way to know if it's having any effect is to keep track of the results. We're looking at 5 specific characteristics: hyperactivity, responsiveness, verbalization, meltdowns and how he's sleeping; with each characteristic we'll keep a record of how they are effected on a 1-4 scale. By breaking the day into two hour chunks, we can also see if there are any specific times of the day when Gus is struggling or if there seem to be other factors effecting him besides diet (like being tired). Many of these things we already have a good sense of, but we want to look at them specifically as effected by the removal of sugar (or not effected if that's how it works out).

Once we have an idea of how the sugar removal with help/not help/not effect his behavior and coping ability, then we will be better informed to decide if we should pursue the next step, which would be removing dairy from his diet. But one thing at a time.

And I think I need to make something clear, mostly because I've been reading some other blogs and I have a tendency toward second-guessing myself. My reasoning for taking these steps has nothing to do with not accepting my son for who he is or being disappointed in the child we have. I adore both my kids for their strengths as well as for their flaws. But I know that the world is often a hard place for him to navigate, and if something like changing his diet can make it easier for him to function in the world, then I can't really justify (to myself) not taking those steps.
Hopefully, I'll figure out a way, in the next day or so, to easily post my spreadsheet in case anyone's interested.

Tuesday, August 14, 2007


My husband agreed to come with me today to the nutritionist in order to get the results and to ask some questions of his own. I was actually quite disappointed with her responses, with the report and with her attitude in general. So, I think that perhaps he was right to be skeptical this time.

My biggest problem with the report was that it told us virtually nothing specific to my son. There was maybe a paragraph listing the different sports that were considered 'active' but no other explanation of just what that meant. The other four pages of the report were an outline of the program we'd be expected to follow: three to six visits initially, then anywhere from twelve to thirty-six weeks following, depending on progress. There wasn't even any specific explanation of what the two supplements were that she was recommending; she just said that they were homeopathic - not even a name brand. This lack of information disturbed me.

I asked about the specific reasons for the dietary changes, and the reasoning behind removing dairy from Gus's diet was mostly for physical reasons - it produces more phlegm in the body. That has nothing to do with his Asperger's, though.

Then my husband got around to asking his questions. He asked about clinical trials, about where he could get more specific information on the technique. She got somewhat defensive and actually seemed annoyed that he wasn't all gung-ho over her methods. And, although she said that she was fine with our decision to wait until we get back Gus's blood work before putting him on any homeopathic remedy, she did become very cold and short. This bugged me as well.

I mean, really, if I was going to give my son medication from a doctor, I'd want to do some checking on it. It's perfectly reasonable for a parent to ask such questions, and now I'm glad that my husband stopped me from jumping in (although I expect that I would have hesitated once I saw the lack of info in the report anyway).

So at this point, my opinion of Nutrition Response Testing is not good; it may change if we find that she was right from the blood tests. But as for now, not something I'd recommend.

Well that didn't go as planned

My husband did some of his own research last night on Nutrition Response Testing and is dead set against it and most of the nutritionist's recommendations. He's okay with removing the sugar from Gus's diet. There's a small chance that he may decide to come and talk to her, but he's firmly convinced that it's a bogus practice and doesn't want Gus taking any supplements. He's also not quite convinced that we should take him off dairy.

So we compromised a little. We're going with the sugar removal for 2 weeks to see the effect, then we'll try out the dairy removal to also gauge any differences. As for the metals, we've agreed to wait until we get the blood work back from the geneticist to see if they show up and we'll proceed from there.

Last night's was one of the most heated discussions we've had since trying to decide where/when/if to move.

Monday, August 13, 2007

Whaddya Know

We went to see the nutritionist today at the Center for Natural Healing located in Kingston, NY. What a fascinating practice!

Marsha uses Nutrition Response testing, which upon further research seems to be (or at least closely related to) Applied Kinesiology. Now the latter has been criticized as 'quackery' ( see Quackwatch) and honestly, if I didn't have some level of experience with energy work, I'd probably agree. Yet, NRT seems to combine elements of acupuncture and homeopathy to perform muscle testing in order to pinpoint where the problem areas are and what nutritional supplements can counteract said problems.

More information on Nutrition Response Testing can be found here:

AcuNatural Family Healthcare

So what did we learn thus far? Well, I go back tomorrow for the full report, but
apparently, Gus does not have gluten problems. Big relief!! The recommendation is that we remove dairy from his diet as well as sugar. It will be a challenge, but nothing that will kill us. Quite frankly, I've always known that sugar is bad for him, in particular, but for people in general. (We were also given, as part of our packet, 124 Ways Sugar Ruins Your Health by Nancy Appleton, PhD.) In addition, it seems that Gus has mercury and lead in his system. So that will need to be addressed with a supplement called Metal Free. It's expensive, but if should last for several months and if it works, I can eat the buck-fifty. I'll just have to convince my husband.

But how could mercury and, especially, lead possibly be in his system? There could be contaminants present around us now, or there could have been some exposure as far back as when I was pregnant. I've got metal fillings, Gus had vaccinations, which probably had preservatives containing mercury. as for the lead, we've lived in 2 places that were built back in the thirties, so there could easily have been lead there, or who knows? there could even be some sort of lead contamination in our drinking water or in the canned food we eat. So if there's something that can get the metals out of his system, would I be remiss to not even try it and see if there's some improvement?

So far, I'm pretty optimistic about what I'm hearing, but time will tell. Despite the nay-saying, I've seen enough testimonials and heard enough first hand about this particular nutritionist, that I'm willing to give it a real try.

There could be something to this

I took the weekend off partly because I wanted to observe Gus for a couple of days on our Feingold diet. Saturday worked out quite well as the doctor had instructed me to keep both kids quiet over the weekend (Gus had swollen tonsils and MM was getting over an ear infection). So we all went to Hannaford's to check out their natural foods section. I was very impressed - no only do they have an entire section of the store dedicated to organic foods, but there are other things scattered throughout the store as well. Their prices are excellent, too.

So this weekend a good 95% of what we've eaten has been unprocessed, additive and preservative free.

Any effect on Gus? That's hard to say, as he does have the thing going on with his tonsils. However...

He hasn't complained about any discomfort whatsoever; whereas he typically spends afternoons running back and forth across the house or some other such form of bouncing off the walls, he's been extremely calm and quiet; we only had one meltdown all weekend - over his video game not saving so he was afraid he'd have to start from the beginning. Now, he has spent a good deal of time in front of either the game console or his computer, but that's not very different from what he typically does. The calmness we've seen gives me reason to think that this dietary change may just work out for him. I won't jump at shadows just yet, but hope is good, isn't it?

If you've had any similar experiences with dietary changes, please comment and share them with us!

Friday, August 10, 2007

The Test

Earlier this summer, we started the process of having genetic testing done on Gus, as requested by the pediatric developmentalist who finally diagnosed him with Asperger's. The first stage of testing was more of an interview with the geneticist for information such as family tree, histories of illnesses, but mostly the routine background on my pregnancy and Gus's early development. The second stage of testing required me to bring Gus to the geneticist for a pretty standard examination. We learned 2 things at this appointment:

- Asperger's seems to be more prevalent among children with Jewish backgrounds; my father-in-law is Russian-Jewish.

- Hyperextensiveness in the joints (commonly known as double-jointedness, which I and Gus are both blessed/cursed with) has some odd relationship to heart murmurs. Go figure.

Then came the most fun part of the test: the blood work. We needed to have blood work done for 2 different doctors, which translated to about 12 vials of blood being drawn from my poor boy's arm. can you imagine what it's like to take a child who is a) hyperactive and b) scared out of his withs and c) doesn't always fully understand what someone is saying to him, and to hold that child still while 12 vials of blood are seeping out of his arm as he looks on (because he refuses to look away)? I must say, I was very proud of him - he held up amazingly well.

We go back in 5 weeks for the results.

Thursday, August 9, 2007

Enzyme Therapy and the Feingold approach

The more I look into enzyme therapy, the more it seems like it could be a viable option. It was hard to come to this conclusion because everything I'd read to this point has been full of technical terms that gave me a headache. But I think I finally get the concept.

There is a theory of autism that says individuals on the spectrum have trouble digesting certain proteins, usually gluten and casein. When they are inadequately digested, certain compounds enter the bloodstream and these can have some 'opioid' effects on the brain (think of morphine). Therapies like casein and gluten free diets strive to remove the problematic substances from the diet. But, these diets cam be expensive and impractical unless the child is living in a bubble.

Enzyme therapy, on the other hand, helps the body tolerate these substances and digest them more completely. The specialized diets may help as well, especially if the child has gastric issues and needs to heal the gut. From what I've read, some people have seen positive effects from enzyme therapy in as little as 3-4 weeks.

One other approach of note is the Feingold approach, which basically advocates the removal of preservatives and artificial substances in foods. At its core it seems to be the equivalent of going organic and all-natural.

I've tossed around that notion for a while now, just because it must be a healthier way to eat, but I always hesitated because of the cost. But I tried something this week. When I did my grocery shopping, I took the time to buy all certified organic and all-natural foods. And I discovered something interesting. I only spent about $10 more than I normally do. How'd that happen? I ended up without all the junk that usually finds its way into the cart! No soda (only for the adults, but not a necessity by any means), no chips, no pre-packaged convenience snacks...So what gets spent in higher costs per item, is easily offset by letting go of stuff that probably shouldn't be eaten anyway.

So I've finally decided where to start my little experiment. First we'll start with getting the gunk out of our bodies, just because it can't hurt, and after I meet with the nutritionist on Monday, we might go the enzyme route for a few weeks. then I'll cross my fingers and hope for the best.

A couple of sites to check out for more information:

And a good read:
Enzymes for Autism and other Neurological Conditions: A Practical Guide by Karen DeFelice.

Wednesday, August 8, 2007

Dinnertime humor

Gus, as I said before, is partial to jokes, especially knock knock jokes. Here's his latest:

Gus: Knock knock
Me: Who's there?
Gus: Anita
Me: Anita who?
Gus: Anita glass of water

Gus: Knock knock
MM: Who's there?
Gus: Phyllis
MM:Phyllis who?
Gus: Phyllis another glass of water, please.

And MM's favorite:
MM: Knock knock
Gus: Who's there?
MM: Interrupting cow
Gus: Interrupting cow --

A bit of humor always helps to round out the day.

Dietary interventions

In the past two weeks, I've come across people who have suggested to me that I should try different dietary methods of helping my son. One person, a dietitian, is a strong advocate of the gluten-free/casein-free diet. She also tried to convince me to try enzyme therapy. The other person was a mom with a child who has ADHD. She was advocating enzymes, supplements and an all-organic diet. I had heard about these therapies in the past, but quite frankly, they're very hard to maintain, and when I had first heard of them, our pediatrician couldn't give me the information I was looking for. So I thought that maybe it's time to consider one or all...and there's the problem. Which therapy is right?

Gluten is a protein found in certain grains: wheat, rye, barley, and because of contamination issues in processing, sometimes oat. When gluten is removed from the diet, the small intestine can repair itself. The gluten-free diet is recommended for those individuals who suffer from intolerance to gluten that can cause all manner of gastric disturbances (i.e. diarrhea, bloating, gasiness). The success stories sound very hopeful, so what do we have to lose?

The thing is, Gus has never had any gastric problems outside of the occasional virus. So would this diet, which is recommended for 3-6 months, be of any use to him? A good nutritionist may be able to evaluate the situation, but they can be a little pricey. One place I was referred to in Kingston, NY charges about $120 for an initial consultation. I was fortunate enough to be given a referral card, so I may be able to be seen for much less. We'll see how that works out.

On the plus side, it makes perfect sense to me that spectrum kids digest food a little differently than the typical child. I've said for years (to pretty much myself because no one around us likes to listen to me) that Gus can't handle chocolate in even the smallest of doses. A bit of chocolate would usually send him into hyperdrive for at least 48 hours. "But that's crazy...there's not that much sugar in chocolate...the amount of caffeine in chocolate is minuscule..." I don't know what it is in chocolate that has always made him nutty, but the only evidence I need is that when he has it, he's worse, and when he doesn't have it, he's better. So the argument for eliminating gluten from the diet feels right to me. And I'm certainly willing to try it if I can.

Which brings us to the down side. Although many more supermarket chains are starting to carry gluten-free products (locally for us, A&P and Hannaford's) in addition to the Mrs. Green's and health food stores, the fact still remains that these foods are much more expensive. If we were better off financially, hell if we even had 2 full incomes, it might not be such an issue. But when you're consistently having trouble staying out of the red every month, it's a very real issue.

Once we get past the cost, then there's the fact that gluten can be found in almost everything! And what about when we eat away from home? Gus's school doesn't follow a gluten-free program, and he's in a school for special needs children. Our families would certainly have a problem with adapting to a new diet. I've got an Italian mother-in-law who lives to feed her grandchildren pasta and bread, and those things are my kids' favorites. Yes, we can find gluten-free pasta (it's actually pretty good), but if I suggested that MIL try something different, that would be akin to asking her to throw a spitball at the pope.

Snacks are another issue. I tried a few things that I thought my son might like - he didn't. So I am still searching and trying to adapt before going full force into this diet. I'll report my progress.

Casein is a protein found in dairy products. This wouldn't be too difficult to incorporate into our diets (if I could get my in-laws to stop obsessing over feeding my children ice-cream - they've gotten better about it). There are enough ways to get calcium into a diet without dairy, and my daughter already won't drink milk. Even though Gus does drink milk and eats yogurt, no one else in this household does. Soy milk hasn't gone over too well. I attempted rice milk, and I don't think he liked that too much either, but I'll need to try it again before I can say for sure. And even if the kids can't have ice-cream, they can still have ice-pops made with fruit, which they love just as much. Of course, Gus isn't one of those kids with any major food aversions, so it may be easier for me to make this particular transition than some others.

I'm still researching the enzyme therapy route and going all-organic, so that will be a post for another day.

Tuesday, August 7, 2007

Introducing Gus

This is my first post and I'm hoping it doesn't end up being novel length. Gus is actually the name of a character in novel I'm working on self-publishing. He is based loosely on my real life son, and so I will refer to my son by that name here.

Gus is 6 and has Asperger's Syndrome. He's fairly high functioning - he has loads of language and his cognitive skills are great. However, he has some trouble using all the language he's acquired appropriately. Trying to have a conversation with him is the epitome of randomness, and it's usually pretty one-sided. Most of the time, he's not particularly interested in what others have to say; he's mostly just vocalizing all the many thoughts that are racing around his very busy brain. But he has good days, and on those days we can have something close to a chat.

An average day (like today) will involve him running through the house like a hot rod - back and forth, complete with zooming noises. I'll have to repeat anything I say to him a minimum of 4 times, although he will listen much more attentively to his younger sister, four-year-old Mama Mama (let's call her MM). Ironically, for all his lacking social skills, he and his sister are extremely close and play beautifully together. They're playing now, probably Teen Titans or some such other super-hero themed game. When the time comes to clean up the bedrooms for bed time, I will be afraid to see the destruction that's been wrought upon the upper level of our home. But at least they've having fun and interacting. They both need that.

Gus loves to swim, but hates to have wet clothes or to be touched with anything wet. And he hates soap bubbles. He loves music, but if we sing near him, he will tell us to shut up. His sister's singing often makes him cry (which honestly, I can't blame his condition for). He tells knock-knock jokes, but often messes up the punchlines, but they're funny anyway. He's a trip, that kid.

So in the days that follow, I'll be writing about some of the therapies we're trying out, how they're working, pros/cons, things like that. And when all else fails, I'll just blather on about my boy.