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.

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!

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.

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!

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.

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.

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.