Oh good. He's angry and thrusting cheese and crackers in my face. Now he's crying. I'm trying to reason with him, but he's so mad.
he said "I know you're trying to make me healthy, but you're just making me even worse!" He does get it, but he doesn't like it. Poor guy. I don't blame him.
I've been trying the I know you'll make the right choice thing, and it is working, but he's pretty resentful. He now wants to prove me wrong. "I'm getting sick because I've been too much in the sun." (Mommy gets heat stroke easily).
I'm just really happy that this is Thursday and I can leave at 6pm. I need a break from this, it's too intense. It's harshing my vibe.
Thursday, September 18, 2008
Day 2, and the horrific discovery
We have now officially made it through a day! That may not seem like a huge accomplishment, but I was a little more than nervous that we'd be starting over every day for the next few weeks.
Last night both kids stayed up late. I think I know why this happened. That damn routine. Let me just say right here that I am not the schedule mama, and if I had it my way we'd just go with the flow all day everyday. But dems fightin' words to Jonas. "Flow" is the poler opposite of this boy. He does need a loose routine so he can know what to expect. Yesterday we went hiking and when we got home, instead of getting ready for bed, I did some laundry and tidied up a bit, and let the kids play computer games. What a mistake. I couldn't get them off it. I finally went up to bed and they came wandering in much later. I think it was 11:30.
But do they sleep in this morning and get the sleep they need? Ha! Outrageous! Who would be so lucky? No, no, Jonas got up at 8:30, which is typical for him. Lavinia is still sleeping, though she wet the bed (hers this time, thankfully) again last night. Hmm... There is this cold floating around here, so who knows the cause, but I'm getting suspicious.
While Lavi and I were brushing teeth last night (couldn't pull Jonas away even for a minute) I smelled banana! Surely the only reason I'd noticed this now and not one of the bizillion other times we've brushed teeth is that I've got secret hidden allergens on the brain. Sure enough, stupid Tom's Of Main Silly Strawberry toothpaste lists the evil banana amongst its otherwise perfectly acceptable and healthy ingredients. Just switch, than, right? It's not a big deal, you say, there's plenty of better companies anyway, right? No. Not that simple at all.
I know anyone with a SPD kid will understand how grave this situation is. For those who don't, I'm not sure how to help you fully appreciate the magnitude of the toothpaste issue. But I will try. You see, Jonas is extra sensitive to touch and smell and taste (and all senses, but they're not important here). This toothpaste has what is the ONLY (I know this from trying and trying to get him to switch to another brand) perfect combination of texture, smell, and taste. Brushing teeth is always a battle, made only slightly better since the infinitely wise toothfairy brought him an electric toothbrush. This surely must be a most unpleasant experience for him, but we've been able to get him to brush pretty consistently with the trifecta of routine, fear, and this very special toothpaste. I have no idea what I'm going to do now.
Just to start my day on the best possible note, Jonas began whining for a banana the moment he came downstairs. Tell me how this is fair? He bellowed "I'm no longer on the special diet!" Which I find an amusing thing to yell, but not a fun stance to take. I assured him that wasn't going to happen, we made a list complete with pictures of all the things he can't have. That doesn't sounds smart, I know, but He wanted it laid out. He's not happy, and has yet to accept anything I have offered him to eat so far.
I haven't had the heart to burden him with the toothpaste debacle. He may just loose it.
Last night both kids stayed up late. I think I know why this happened. That damn routine. Let me just say right here that I am not the schedule mama, and if I had it my way we'd just go with the flow all day everyday. But dems fightin' words to Jonas. "Flow" is the poler opposite of this boy. He does need a loose routine so he can know what to expect. Yesterday we went hiking and when we got home, instead of getting ready for bed, I did some laundry and tidied up a bit, and let the kids play computer games. What a mistake. I couldn't get them off it. I finally went up to bed and they came wandering in much later. I think it was 11:30.
But do they sleep in this morning and get the sleep they need? Ha! Outrageous! Who would be so lucky? No, no, Jonas got up at 8:30, which is typical for him. Lavinia is still sleeping, though she wet the bed (hers this time, thankfully) again last night. Hmm... There is this cold floating around here, so who knows the cause, but I'm getting suspicious.
While Lavi and I were brushing teeth last night (couldn't pull Jonas away even for a minute) I smelled banana! Surely the only reason I'd noticed this now and not one of the bizillion other times we've brushed teeth is that I've got secret hidden allergens on the brain. Sure enough, stupid Tom's Of Main Silly Strawberry toothpaste lists the evil banana amongst its otherwise perfectly acceptable and healthy ingredients. Just switch, than, right? It's not a big deal, you say, there's plenty of better companies anyway, right? No. Not that simple at all.
I know anyone with a SPD kid will understand how grave this situation is. For those who don't, I'm not sure how to help you fully appreciate the magnitude of the toothpaste issue. But I will try. You see, Jonas is extra sensitive to touch and smell and taste (and all senses, but they're not important here). This toothpaste has what is the ONLY (I know this from trying and trying to get him to switch to another brand) perfect combination of texture, smell, and taste. Brushing teeth is always a battle, made only slightly better since the infinitely wise toothfairy brought him an electric toothbrush. This surely must be a most unpleasant experience for him, but we've been able to get him to brush pretty consistently with the trifecta of routine, fear, and this very special toothpaste. I have no idea what I'm going to do now.
Just to start my day on the best possible note, Jonas began whining for a banana the moment he came downstairs. Tell me how this is fair? He bellowed "I'm no longer on the special diet!" Which I find an amusing thing to yell, but not a fun stance to take. I assured him that wasn't going to happen, we made a list complete with pictures of all the things he can't have. That doesn't sounds smart, I know, but He wanted it laid out. He's not happy, and has yet to accept anything I have offered him to eat so far.
I haven't had the heart to burden him with the toothpaste debacle. He may just loose it.
Wednesday, September 17, 2008
Day 1, Take 2 - lunch and dinner
For lunch and dinner we had the same meal. I see the likelihood of this happened as pretty high, since there are still only a few things we're eating. We had rice pasta with a homemade marinara. Now, I know lots of people makes their own sauce, but I'm just not one of them. I did have a recipe, so on Jonas' insistence I made my very first marinara. It was ridiculously simple and pretty damn good. It actually was good enough to have it twice. I already have plans for improving it, though, and if we're going to be eating this much of it it'll have to kick ass.
We went hiking with our friends Aleks, Bastian, and Anna kiss. The prospect of playing with Aleks always gets Jonas really worked up. He had been wearing his pajamas inside-out all day and was unwilling to change and I almost caved and let him hike in inside-out PJs, but he was finally convinced after getting them wet with hand washing. Over all I think he did fine, though the waiting for them to get there was hard and the leaving was harder. Leaving is always hard. He was awfully scared because it was pretty dark in the woods, but he dealt with it well. No worse than expected.
We came home and ate more rice pasta. I think I'm starting to like this stuff.
We went hiking with our friends Aleks, Bastian, and Anna kiss. The prospect of playing with Aleks always gets Jonas really worked up. He had been wearing his pajamas inside-out all day and was unwilling to change and I almost caved and let him hike in inside-out PJs, but he was finally convinced after getting them wet with hand washing. Over all I think he did fine, though the waiting for them to get there was hard and the leaving was harder. Leaving is always hard. He was awfully scared because it was pretty dark in the woods, but he dealt with it well. No worse than expected.
We came home and ate more rice pasta. I think I'm starting to like this stuff.
Day 1, Take 2 - breakfast
Food wise our day is going well (that's not saying much at 10:30am, though). Jonas was happy this morning to discover a somewhat healthy and organic version of Rice Krispies and rice milk awaiting him for breakfast. He had three servings. Lavinia was pretty happy with it, too. She wet the bed last night, so I'm starting to think maybe she does have some food issues.
Jonas did have a little bit of a fit over bananas. I explained to him what I thought and about different kinds of reactions (because, as he said, sometimes he's fine) and about anaphylactic shock (something I knew he'd be intrigued by as well as get the seriousness of) and of course he needed to debate these ideas on the premise that such a good food must be good for you. Fair enough, by not good for you, my man.
He settled on the city fresh extra watermelon, courtesy of Annakiss. Lavinia had an apple, or as she put it, an apple-melon.
Behavior wise it's been pretty normal, if not slightly rosier than normal. Jonas has been a bit of a control freak, as always, but he's been open to redirection. He's also been rather affectionate. He cuddled on my lap this morning for 5 minutes and has stopped in for a few hugs here and there, too. Not altogether untypical, but upped to be sure.
He did get stressed out over the banana thing and started talking about how he didn't want this to happen again, and was clearly getting anxious over food choice limitations, but that resolved better than I expected, even.
Lavi (this is how we spell "Lovie" in reference to her, by the way, as in luh-VIN-ee-ah, or LOVE-in-ee-ah) has been whiny as hell. Quick to tears, and emotional. Oi. She's got the beginning of a cold, so it's probably just that. The wet bed, too.
Jonas did have a little bit of a fit over bananas. I explained to him what I thought and about different kinds of reactions (because, as he said, sometimes he's fine) and about anaphylactic shock (something I knew he'd be intrigued by as well as get the seriousness of) and of course he needed to debate these ideas on the premise that such a good food must be good for you. Fair enough, by not good for you, my man.
He settled on the city fresh extra watermelon, courtesy of Annakiss. Lavinia had an apple, or as she put it, an apple-melon.
Behavior wise it's been pretty normal, if not slightly rosier than normal. Jonas has been a bit of a control freak, as always, but he's been open to redirection. He's also been rather affectionate. He cuddled on my lap this morning for 5 minutes and has stopped in for a few hugs here and there, too. Not altogether untypical, but upped to be sure.
He did get stressed out over the banana thing and started talking about how he didn't want this to happen again, and was clearly getting anxious over food choice limitations, but that resolved better than I expected, even.
Lavi (this is how we spell "Lovie" in reference to her, by the way, as in luh-VIN-ee-ah, or LOVE-in-ee-ah) has been whiny as hell. Quick to tears, and emotional. Oi. She's got the beginning of a cold, so it's probably just that. The wet bed, too.
Day 1, Take 2
Here we are, starting over. I've decided to just go with eliminating what I suspect to be an issue. If that isn't enough we can also go from there. Not surprisingly, I got over excited and jumped in over my head, and now I need to take a few steps back.
Here's the list of suspected allergens:
Wheat
Dairy
Soy
Corn
Eggs
Bananas
Here's our list of symptoms:
Jonas (SPD/ASD):
Tantrums
Aggression*
Low Impulse Control*
Selective Mutism**
Belly Ache/Upset Stomach
Chest Pain
Headache
Dark Circles Under Eyes
Lavinia (NT):
Tantrums
Excessive Whining
Belly Ache/Upset Stomach
Headache
Dark Circles Under Eyes
Bed Wetting
*These are not necessarily direct reactions to the allergen. These are SPD/ASD traits that are magnified by him feeling out of whack or sick. These are really what I'm most concerned about and the most prevalent. Again, not that I want him to be not autistic, but I want desperately for him to be happy and healthy and comfortable and able to control himself (alright, and not a social outcast, which he will quickly become if he can't control himself). He's not happy when he's like this. In fact, he's scared and defensive.
**Obviously Selective Mutism is a condition all it's own that is not exactly what I'm talking about. And certainly not an allergic reaction. But, the worst I've ever seen this is about 30 minutes after eating a banana (and I'm certain that was the only thing different than every other day). He got extremely worked up about having to put his shoes on (a sensory issue made more intense, no doubt) and getting ready to go to the park (something he loves but he always has anxiety over leaving, or well, any transition but especially physical ones). He started getting physical and rough with me and it just escalated into something I'd never seen before. He looked terrified and it was like he was trapped in this out of control spiral of stimming and hitting and kicking. He seemed so angry but his faced look scared. He refused to speak at all, or even acknowledge me speaking to him (He often ignores what he doesn't want to hear, but this was different, he wouldn't even nod). I had to restrain him, which I absolutely despise doing. When I've done so in the past, however, he's been pretty vocal about wanting to calm down and that he wants me to help and it works pretty effectively and relatively quickly. This was not the case. It was about 45 minutes of restraining him before he began to calm down (ok, so I get that this is a normal or average time frame for restraining to take effect, but it'd never been the case before with him). I kept telling him I'd let him free if he wanted, he just had to tell me, or even nod. Nothing. Just grunting and thrashing.
That is exactly my point. He couldn't speak. It was so unlike him. He just shut himself off in a way I'd never seen and it really freaked me the hell out. Not learning my lesson he still had bananas here and there and eventually had a similar reaction. I got it that time, and I've been careful about them, but because it's not a universal reaction I'd doubt myself and give in.
I do think he exhibits traits of Selective Mutism, but not in the classic ways. I wonder, though, if he would in a school setting (the typical presentation for SM is a child who speaks at home but never in certain settings, usually school, due to stress and anxiety). Under pressure and stress he clearly "clams up".
I may not even go so far as to reintroduce bananas to Jonas because these experiences with them have been so bad that I don't ever, ever want to risk it. I'm happy to believe at this point that bananas are a no-no for him.
For Lavina, I don't know if she has allergies to anything. Those symptoms are really occasional things that may have nothing to do with food. I guess we'll find out, though.
Here's the list of suspected allergens:
Wheat
Dairy
Soy
Corn
Eggs
Bananas
Here's our list of symptoms:
Jonas (SPD/ASD):
Tantrums
Aggression*
Low Impulse Control*
Selective Mutism**
Belly Ache/Upset Stomach
Chest Pain
Headache
Dark Circles Under Eyes
Lavinia (NT):
Tantrums
Excessive Whining
Belly Ache/Upset Stomach
Headache
Dark Circles Under Eyes
Bed Wetting
*These are not necessarily direct reactions to the allergen. These are SPD/ASD traits that are magnified by him feeling out of whack or sick. These are really what I'm most concerned about and the most prevalent. Again, not that I want him to be not autistic, but I want desperately for him to be happy and healthy and comfortable and able to control himself (alright, and not a social outcast, which he will quickly become if he can't control himself). He's not happy when he's like this. In fact, he's scared and defensive.
**Obviously Selective Mutism is a condition all it's own that is not exactly what I'm talking about. And certainly not an allergic reaction. But, the worst I've ever seen this is about 30 minutes after eating a banana (and I'm certain that was the only thing different than every other day). He got extremely worked up about having to put his shoes on (a sensory issue made more intense, no doubt) and getting ready to go to the park (something he loves but he always has anxiety over leaving, or well, any transition but especially physical ones). He started getting physical and rough with me and it just escalated into something I'd never seen before. He looked terrified and it was like he was trapped in this out of control spiral of stimming and hitting and kicking. He seemed so angry but his faced look scared. He refused to speak at all, or even acknowledge me speaking to him (He often ignores what he doesn't want to hear, but this was different, he wouldn't even nod). I had to restrain him, which I absolutely despise doing. When I've done so in the past, however, he's been pretty vocal about wanting to calm down and that he wants me to help and it works pretty effectively and relatively quickly. This was not the case. It was about 45 minutes of restraining him before he began to calm down (ok, so I get that this is a normal or average time frame for restraining to take effect, but it'd never been the case before with him). I kept telling him I'd let him free if he wanted, he just had to tell me, or even nod. Nothing. Just grunting and thrashing.
That is exactly my point. He couldn't speak. It was so unlike him. He just shut himself off in a way I'd never seen and it really freaked me the hell out. Not learning my lesson he still had bananas here and there and eventually had a similar reaction. I got it that time, and I've been careful about them, but because it's not a universal reaction I'd doubt myself and give in.
I do think he exhibits traits of Selective Mutism, but not in the classic ways. I wonder, though, if he would in a school setting (the typical presentation for SM is a child who speaks at home but never in certain settings, usually school, due to stress and anxiety). Under pressure and stress he clearly "clams up".
I may not even go so far as to reintroduce bananas to Jonas because these experiences with them have been so bad that I don't ever, ever want to risk it. I'm happy to believe at this point that bananas are a no-no for him.
For Lavina, I don't know if she has allergies to anything. Those symptoms are really occasional things that may have nothing to do with food. I guess we'll find out, though.
Tuesday, September 16, 2008
still day 1 - eating more
So this is not going well. Jonas has been flipping out about what he can't have and Lavina has been sneaking food. ugh. I'm really leaning toward just eliminating what I think may be the problem and expanding if that's not enough, because he's hating this, and I'm not really convinced that I shouldn't let him have some of these things. Though, everything he's wanted today are the big no-nos anyway. sigh.
I gave in at 5:45. He dragged a box of hidden Puffin cereal and the milk to me and I caved and let him have the dairy and corn. damnit. I guess tomorrow will be day one, take two.
I gave in at 5:45. He dragged a box of hidden Puffin cereal and the milk to me and I caved and let him have the dairy and corn. damnit. I guess tomorrow will be day one, take two.
still day 1 - freaking out
Only one day in and I'm starting to wonder if this is the right thing to do. Maybe I'm being to extreme about it? Maybe I should go for the GFCF diet and if that doesn't seem to cut it then head down the TED path? I don't know how committed I am because I keep thinking things like "I don't think tomatoes are a problem" and "Peaches, come on, who can't eat peaches?" but then I doubt that, too. I'm really confused, I guess, and there's this voice in the back of my head telling me I can't cure him and I shouldn't try and I don't want to be the mom who's desperate to change her child into something he's not. While I realize there is a difference between wanting your child to be a healthy autistic and want your child to not be autistic, I think the line may be thinner than I thought.
He does have food sensitivities, I'm pretty certain of that, but maybe it's going over board to cut out everything when I have some good guesses about what the real problem is. I guess I'm thinking about cutting out gluten and casein and dairy, and eggs, and soy and corn and sugar, and everything artificial, and bananas, and nuts.
So maybe I'll do ED instead of TED.
There's this cool food allergy blog of a MDC mama that talks about a lot of this. I especially love her section on the hidden ingredients. I thought I knew, but I was surprised by a lot, actually.
He does have food sensitivities, I'm pretty certain of that, but maybe it's going over board to cut out everything when I have some good guesses about what the real problem is. I guess I'm thinking about cutting out gluten and casein and dairy, and eggs, and soy and corn and sugar, and everything artificial, and bananas, and nuts.
So maybe I'll do ED instead of TED.
There's this cool food allergy blog of a MDC mama that talks about a lot of this. I especially love her section on the hidden ingredients. I thought I knew, but I was surprised by a lot, actually.
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