Day 5!

Well I dropped the ball on posting, but everything is going well!

Jonas and Lavinia were at their papa's house over the weekend so I'm not entirely sure how that went, but my understanding is that they didn't have anything off their diet and they didn't have any melt downs or accidents. yay!

Over all Jonas is doing really good. He seems to be handling things very well, better than I expect. His calm is lasting longer and he's loosing his cool less. There's still stimming, but mostly verbal stimming which he acknowledges he does when he's hungry. That's the thing I've found, I've got to be totally on top of the food thing at all times. There needs to be food there before they get hungry. I can handle that.

Last night they were with their papa and had gluten free lemon poppy cake and last night Lavi wet the bed, and she's been grumpy as hell today. I don't know what else was in that cake, but I'll take a guess at milk and eggs and soy.

We've been living on chicken and rice, mostly. And lots of fruit. This morning they had rice cereal with rice milk and grilled chicken for lunch. and snacking on fruit around the clock.

Jonas has been kind of yelly today. Well, everyone has. I had the refrigerator repairman come out this morning and I think that got everybody pretty exciting. It was quite entertaining, if I do say so myself.

Day 1, Take 3 - breakfast

Ah breakfast. Lavinia hasn't even come down yet - she's watching Curious George in my room, but Jonas is down here yelling at me about food. This is so lovely. He wants "sprinkle cheese" on his left over rice pasta. He was all happy and sweet and making a really impressively intricate drawing of excavations when he decide he was hungry and wanted something "heated up". So he snuck some and I caught him and felt like a total jerk throwing out his food. But what am I supposed to do?

The simplest solution is to not have anything he can't have in the house. But the problem is that I watch kids here all week and I can't very well put them on a diet, too. Plus, I'm not about to toss a ton of food that I already have. That's crazy talk.

Day 2, Dinner

For dinner both kids were with papa and had left over rice and veggies (which I don't think they ate, but were carrots, broccoli, orange bell pepper, onion, olive oil and salt) and I have no idea behavior wise how things went other than "normally".

Day 2, tofu + belly ache

Damnit. Jonas says his belly hurts. He pointed to right below his left ribcage.

Tofu is back out, and tomorrow is back to day 1. M'er F'ers.

Day 2, lunch

For lunch we had stir fry over brown rice. Yummy. But Lavinia didn't eat any veggies, and Jonas only had the aforementioned tofu. And man, rice is way better with butter.

Lavi's really whiny still, and quick to tears, overly emotional. She also had a peanut butter, honey and banana sandwich from a friend. I said it was ok because I was so tired of fighting already, and with her I'm really just thinking dairy and maybe eggs anyway. Wow, I really am horrible at this.

Day 2, I suck at this

ah crap. I caved. What is wrong with me? I suck at this!

I made tofu for Jonas after about an hour or so of his persistent whining, drawing pictures, and describing the benefits of tofu, threatening me and hitting and kicking me. Ugh. He refused to eat anything else and I just feared him not eating. That's the thing, he really will just not eat. I'm sure that he wouldn't starve himself, but he'd get close and he'd get completely out of control in the meantime. I'm trying to keep the peace.

But the thing is, I sat back and thought about why I suspected soy and I don't have any good reasons. Actually, the only ones I can really come up with are that he loves it and he couldn't handle it as a baby. Although, he was (seemingly) fine with it as early as 4 months old, so I dunno.

I'm just going to let him have tofu, but not any other soy, and see how it goes. This is hard.

Day 2, cheese and crackers delema

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.

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.

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.

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.

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.

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.

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.

still day 1 - eating

As usual, Jonas has opted out of breakfast altogether. He wouldn't have done so this morning if I'd allowed him the waffles in the freezer, but now I'm a "mean mommy". Actually, I'm a dumb mommy because I bought them thinking "wheat free?! That's perfect!" Duh, they have soy, like everything in a box. They also have peach and pineapple juice, which are also not cool. I don't know what I was thinking not reading the ingredients. Actually, I do, I was very distracted while shopping because I had had a lovely weekend, greatly lacking in sleep and was volunteering for the Cleveland Food Co-Op's we're still here even though Euclid Corridor is riped up so come shop here or we're going to die thing. Oh well.

So, for Lunch I'm making fries and rice pasta, with a side of apples or pears and peas, for those interested in such things. I realize this is a very starchy meal, but what are ya going to do? The fries are pretty good. I just cut red skin potatoes into thin slivers and laid them in olive oil and salt and bake at 450 degrees for 25 minutes or until lightly brown and crispy, turning once somewhere toward the middle. I usually add rosemary and oregano to this (yum!) but the kids aren't big fans of it, and who knows, those could be a problem, too. Now, I served this with ketchup because Jonas was loosing it, and I don't think there's any problem with tomatoes, but I do question the sugar. I just don't know, maybe I messed up big there. The pasta was good too. I like this brand, it's not slimy like the others. Ick.


I can tell Jonas has the anxiety already. He burst into tears (so unlike him) over the ketchup thing, exclaiming "I can never eat anything good ever, ever again!" ugh.

Day 1

Alright, so we're starting the morning of day one. Jonas and I just had a talk about the whole thing. I'd mentioned it before, but I didn't want to get him freaked out about restricting his food choices any sooner than I had to. Anxiety is a big factor in his anger and impulse control so it seemed wise to not make him fret over it.

Ant any rate, the talk went well. I reminded him of how he gets tummy aches and chest pains and head aches - something very concrete that he can relate to - and also about how he gets too wound up and doesn't feel good and can't control himself. That one is hit or miss with him even acknowledging what I'm saying. I think he feels a lot of embarrassment about loosing it, and thus does not want to think about or address it at all. But, he agreed that if eating different foods would help him he'd be all for it. After all, pasta and pears are the go-to foods anyway, so if it's as simple as switching to brown rice pasta, I say bring it.

I'm following the Dr. Sears TED. While I'm nervous (mostly that nothing will come of this and it will be a huge waste of time) I'm excited and hopeful, too. I mean, could it really be as easy as controlling diet? That's such a tangible thing, unfathomably easier than controlling environment (the former main concern). I mean, I love control, control is what I do best. The biggest problem I see right now is with making sure everyone feeding this kid is sticking strictly to this diet. Steve, are you reading this? I'm talking to you. I suppose the simplest way to handle that is to supply their papa with approved foods. God, this is sounding like a lot of work.

Since he hasn't eaten anything yet there's little to post, so I think I'll leave it at this for now. I've already had wheat and dairy and caffeine, today. In fact, that is all I have had. I'm a hypocrite.

TED

so, yes, I'm a very bad blogger. I'm too busy having a very interesting life. *snort*

But now I have a reason to blog! We're going to start on a Total Elimination Diet, and I couldn't be more terrified.

See, I think Jonas is reacting to some things, wheat being high on the list. The problem is, these things are big parts of his already small diet, so I don't expect this to go well.

I intend to put us all on the diet, though I fully intend to cheat.

I suppose I've put it off long enough, so we're starting tomorrow, little do they know. mwahahaha!