My Kid is a Damn Nutter

[jinx]

Originally Posted by Clodfobble

Why does my turkey lunchmeat need to have wheat in it, you cheap additive-filling-space-wasting bastards?

I feel your pain, having had to eliminate dairy (casein and whey, not just lactose) from our diets when Ripley was born. And Pie is right on, you have to cook from scratch, eat simple/whole foods, and asian foods. It takes a while to get used to (we ate carrot sticks and lentils constantly until we got the hang of things) but then becomes normal. You'll all get healthier too.

[Sundae]

I know it doesn't help, but in the spirit of sharing, Mum & I are on a 90% cooking-from-scratch diet at the moment. I love it. It's so much quicker and easier than I ever remember cooking being. In my case probably because I'm not just cooking for myself, and it is my major contribution to the household (Mum & Dad both cook, but they are both difficult to be in the kitchen with when they do).

Of course any leftovers get eaten by three people and none of us work so I know it doesn't compare. But my parents do hate the smell of me boiling up beans and pulses. My Mum has walked into the kitchen numerous times during this process with the patented look of disgust on her face (the mouth turned down one, you know). And Dad chokes & coughs when I am frying onions and garlic. But when it comes to the meal, they enjoy the taste and compliment the food.

All I can say is that side of things does get easier and more pleasurable, and does take less time once it's part of an established routine. And even grim smells become accepted after a while.

Just keep reading what you can get your hands on and keep using Mom-sense. You've been wonderful so far.

[Clodfobble]

So, it turns out "ripping the bandaid off" is, ah, kind of painful. Surprise, surprise. Wheat was just too hard--and we weren't seeing any noticeable improvements like we had with dairy, so we gave it back to him.

But the dairy improvements? Hoo boy.

After his very first foray into sentences with "This is a red spoon" (at 48 hours off dairy,) he has continued to spit out new sentence constructions every single day. In the last two weeks he's used words like now, these, it's, hey, and I for the first time in his life. Overall, we've just been having stellar days around here. He is calmer (not calm, but calmer) and happier than he's ever been. His therapist marveled at his sudden shift in language and has said that by the time we finally get an appointment with the pediatric neurologist (not until April), he may not even qualify for the PDD diagnosis anymore. He still has a lot of the symptoms, most noticeably the echolalia and strict adherence to routine, but the change from my perspective is night and day. He has suddenly started engaging in pretend-play with his toys, is voluntarily wearing long-sleeve shirts on a regular basis, and last night he sat in his chair in a noisy restaurant for upwards of an hour while we visited with a friend from out of town. (We had come in two cars because it hadn't even been a question in our minds that I would need to leave the restaurant with him at some point. The baby was fussier than he was. It was mind-blowing.)

And as a confirmation that it's not coincidental, he did have a tiny amount of dairy last Tuesday, in the form of a white-chocolate-chip cookie. Wednesday, Thursday, and Friday he was terrible, the only bad days he's had since we cleared his system.

As I told lookout in a PM, I am officially a convert. Who knows how many unexplained diseases out there are really symptoms of food sensitivities? The results have been so dramatic, it's all I can do not to accost random people on the street and tell them about it. To be fair, I am still living in a certain state of denial: we were already feeding the kids separately because of Mr. Clod's work schedule, so he and I have not altered our diets at all, though we could probably stand to. But I'm hoping that will come naturally as the kids get older and I lose my motivation for dealing with multiple meals.

[Aliantha]

That sounds like great progress Clod. I'll bet the relief you're feeling is off the charts atm huh?

I'm really happy for all of you. You're a great mum. Keep up the good work.

[classicman]

Wow thats really good to hear. Amazing too.

[xoxoxoBruce]

Supermom!

[LabRat]

Fab. U. Lous.

That is awesome news! I am so happy for the whole Fobble family.

[kerosene]

That's excellent news, Clod. I am happy for you that you found a possible treatment.

[monster]

Excellent news, Fob. Amazing progress.

[Sundae]

I am so happy you've had a breakthrough Clod.

All I will say (and this may not well be welcome) is continue to keep a chart of food/ behaviour. It will help whether the current diagnosis is correct (as it seems to be) or not. In which case it will be invaluable

At the very least it might identify what he can and can't tolerate in terms of percentage/ amount/ origin. At some point your baby boy will be a teenager and an adult. The better records you keep now - and the food he can tolerate may change - the better he will be equipped for the future.

[glatt]

It's really remarkable that a diet change had such a profound impact. Simply amazing.

[Decca]

So glad to hear that the diet change is working for MiniClod. You're a stellar mom, Clodfobble... keep up the great work! I'm cheering for you, and your whole family

[Clodfobble]

I'm kind of bummed these days. If you buy into the seven stages of grief, depression is the last step before a healthy acceptance, so that's good, right?

Of course being in the depression stage means I've finally exited the denial stage. He had his initial screening with the school district for the PPCD (Preschool Program for Children with Disabilities) class, which basically functioned as yet another opportunity for an independent group of evaluators to tell me, "Oh yes, he has problems." There might, just might have been a small part of me that was still quietly insisting that we were still in red-flag territory, that he'd just have a little speech therapy and everything would turn out okay. I can neither confirm nor deny the existence of my denial. At any rate, the only question now is precisely which class would be best suited for him, so we go back for the big multi-hour evaluation in April. End of denial? Check. And either way, all these classes follow the school district's schedule, so we're still completely on our own for the summer. Depression setting in? Check.

Oh yeah, the summer. That time when my stepchildren descend upon my house for 6 weeks straight, throwing both us and them into chaos as everyone's established routines are chucked out the window. We usually send them to a day camp for some number of weeks, but the fact is I am available at home--so the question always becomes, how much money is my sanity worth? And that's just my annual level of stress, this year we get to add in new difficulties like, what the hell would I do with them while Minifob is in therapy? Can I really leave them out in the waiting room for an hour? But can I justify the cost of sending them to camp for a whole week just to avoid that dilemma?

Oh, and to top it off, my Early Childhood Intervention visitor (I refuse to call her a therapist because she does nothing remotely like therapy with him, she barely even interacts with him,) accidentally made me feel like crap. She asked if he was still on "the diet," meaning the full GFCF diet generally recommended for autistic kids. I told her he was only on a dairy-free diet, because going completely gluten-free had just been so incredibly hard, and we hadn't seen any dramatic changes like we had with dairy. She reminded me that it often takes several weeks for everything to clear the system, and she had even seen one child where it took a whole month, but after that of course the change was bordering on miraculous... she was just trying to be supportive, I know, but all I heard was, "Other parents are dedicated enough to make their children healthier, why aren't you?" If there were a way I could know for sure that it would help, I could do it, I know. It's just the possibility that it might do nothing at all that makes it so hard to consider attempting it again. She suggested getting him allergy tested--but then readily acknowledged that the skin prick tests rarely show anything conclusive, because obviously if there were big skin reactions to things he's eating every day we would be seeing it. We could demand blood tests... oh, but those are often inaccurate in children under 6. Really, the "easiest" thing is just try it (indefinitely, of course!) and see if there are improvements. Yeah, easy for you to say, lady. You don't have to deal with the kid who writhes on the floor wailing "Yellow" for an hour because I won't let him have his standard (yellow) Eggo waffle for breakfast.

[lumberjim]

I told her he was only on a dairy-free diet, because going completely gluten-free had just been so incredibly hard, and we hadn't seen any dramatic changes like we had with dairy. She reminded me that it often takes several weeks for everything to clear the system, and she had even seen one child where it took a whole month, but after that of course the change was bordering on miraculous... she was just trying to be supportive, I know, but all I heard was, "Other parents are dedicated enough to make their children healthier, why aren't you?" If there were a way I could know for sure that it would help, I could do it, I know. It's just the possibility that it might do nothing at all that makes it so hard to consider attempting it again. She suggested getting him allergy tested--but then readily acknowledged that the skin prick tests rarely show anything conclusive, because obviously if there were big skin reactions to things he's eating every day we would be seeing it. We could demand blood tests... oh, but those are often inaccurate in children under 6. Really, the "easiest" thing is just try it (indefinitely, of course!) and see if there are improvements. Yeah, easy for you to say, lady. You don't have to deal with the kid who writhes on the floor wailing "Yellow" for an hour because I won't let him have his standard (yellow) Eggo waffle for breakfast.

http://www.ehow.com/how_2307201_make...e-waffles.html

that's not a rick roll

clobble....you have to try the gluten free thing. you know it. thats why it makes you feel bad.

Im sorry...im not trying to make you feel bad....but cmon.

[kerosene]

I am sorry you are feeling down, Clod. I don't truly know what it is to cope with this kind of situation, but I can imagine it would be something I would not easily cope with. You are doing magnificent, however. Your dedication and strength in this difficult time are showing through even just in your text. Don't give up. Your little boy is a lucky, lucky kid, you know. And you will get through this. Maybe it feels like your patience is beyond repair or that you just can't take another day. If so, remember that every day...every moment is fresh. Take a few minutes every day to just breathe. Take some time for you...do something special for yourself, if you can.

Feel free to use PM if you need someone to talk to.

I can relate to the step kids coming for the summer. We also have my husband's children in the summers and it can be taxing for everyone involved, trying to adjust to the differences in households, trying to recalibrate everyone's understanding of how we do things in our house, etc. And I am available to watch the kids, yet, it is usually a stressful ordeal. Last year I put together a weekly schedule which included themes and activities. I posted these schedules on the wall, so the kids knew what we were going to be doing on any given day. It seemed to help diffuse some of the chaos.