That's not abnormal, Griff. That just means you have good taste. :D

agreed!

I can identify with this.

Our daughter will eat anything. Our son is fairly picky. If he asks very nicely and respectfully, we'll let him pour himself a bowl of Cheerios instead of eating the same food as the rest of us at dinner. If he criticizes dinner in any way, no cereal for him. He needs to find a way to choke dinner down or go to bed hungry.

The boy loves to try new food and likes most of it. He hovers around when I'm cooking asking to try the ingredients... He would order the portabello gorganzola salad over anything on the kid's menu.
The girl, not so much. She won't eat most animals, just chicken, and just certain ways. She likes all fruit, likes quite a few vegetables, but prefers them raw. She would live off popcicles, black beans, and mashed potatoes if I let her.

You know what this is? Fucking bullshit, is what it is. It's been just over 6 weeks since we had the adenoid surgery, when the doctor "just couldn't justify" taking the tonsils too because they weren't inflamed at that exact moment in time. Well they're already swelling up again, which we knew to go looking for because we've had another damn regression in behaviors. But rather than drag him into the doctor's office again, we managed to get in there with my digital camera and get a photo of it (Mr. Clod did the honors; I was on toothbrush-gagging duty.) So I'm going to email this to the doctor's office tomorrow and see what they say. I'm betting we'll be back in the pediatric surgery unit before school starts. But hey, the deductible's already paid up, right?

That sucks. :(

Damn, sorry to hear that. Poor kid.

bummer...

This morning, I had a medical doctor look my son in the face and tell him that he could stop acting autistic if he really wanted to.

I am not fucking joking, not even a little bit.

But it's okay. Because I have reached out to my friends, and gotten connected with a new pediatrician (who has an autistic child) who is going to refer us to a new Ear Nose & Throat doctor (who has an autistic child.) Did I mention that we go out of our way to see a pediatric dentist who has an autistic child as well?

We'll take care of our own, and everyone else can go take a flying fucking leap.

I hope you punched him in the side of his fucking brainless head.:mad2:

I am so sorry. I would like to point out though that you are a far better person than I'll ever be. If were forced to witness that the doctor would still be in surgery and I'd be in jail.

Clodfobble rocks.

As Flint would say ...

Wow! that is unbelievable. I'm with lookout - please post bail.

Positive strep culture for the freaking win. No, screw you, Dr. Jeffrey Kahn of Austin Ear Nose & Throat.


Part of me desperately wants to go back to this guy just so I can shove the lab results in his face (the labs he didn't see the need to even run.) But the smarter part of me realizes this is counterproductive, that I don't want to humiliate the guy who's going to have a scalpel in my son's mouth. Gotta just move past it, take my strep results to the new ENT and get my son better...

Heart goes out to you ... I have twins with autism and have family members tell me the same thing. "All you have to do is MAKE them behave; you spoil them too much, you give in to their bad behaviors." Uh, ok, so I am a bad mom, that's the problem.

I'm joining the queue to slap that doctor. WTF?

Our nightmare summer from hell is almost over: we are back on the surgery schedule for a tonsillectomy. And when I say nightmare from hell I really mean it: at his very worst--i.e., about 4 weeks spanning July and August--we were experiencing roughly 5 tantrums a day, each about 30 minutes. The level of aggression during these meant that my only option was to lay with him on the bed, restraining him in a hug until he calmed down again. Meanwhile, my 2-year-old daughter basically gets to sit there and watch her mother pin her screaming brother to the bed. I'm sure that's been fantastic for her emotional development as well.

This whole time, his bad days and worse days have been directly correlated to the size of his tonsils. He tells me every single day that his throat hurts, and that he wants to go back to the hospital. He then reiterates all the details that he remembers from the last time he went to the hospital for the adenoidectomy--the pajamas he wore, the nurses he saw, the toys in the waiting room, the hospital pajamas, the oral medication, the IV, the special mask... and the feeling better. Today he basically promised me in broken phrases that if I would let him have another IV, he would be calm and not fuss at all.

But today we finally saw our new doctor, who gets it. We have (yet another) antibiotic prescription for symptom relief until the surgery on the 15th. In addition, she has ordered x-rays for his sinuses, because she suspects that a chronic sinus infection is actually what keeps re-seeding his tonsils after every round of antibiotics. If the x-rays confirm that, she will also do a sinus wash during the surgery, which involves (highlight for grossness) sucking all the pus out of his sinuses with a giant needle, then flushing them with an antibiotic fluid.

This woman is my hero. I almost started crying in her office when she dismissively said, "Of course I believe you. We're going to help him."

You are the most awesome woman

Well, she's got no choice, she's doing what she has to do... but she shouldn't have to do it, and wouldn't, if the mother fucking doctor did his god damned job.:mad:

I feel for you clodfobble. After reading your post,tired for you too. I am glad for the good news though, I am sorry for the hassle and the pain you all have to go through just to get to the right outcome.

You are amazing. Your chronicles are helping me think about how I need to relate to parents, thank you for that. g

I was going to do this in a pm then decided public kudos were/are well deserved.

Clod - I'm constantly amazed at all the challenges you unwaveringly (sp) overcome.
Your posts have led me to keep keep track of those who are really helping vs those who are just going through the motions. The latter are systematically removed and replaced.

I really don't know how else to say this, but you repeatedly inspire me to keep on fighting when everything I'm dealing with seems so overwhelming and my efforts futile.

Thank YOU.

On the subject of relating to parents, a friend of mine wrote this a week ago in reaction to a bad experience with another parent in her son's mainstream class. She gave permission to others to share it, and ultimately was asked to read it in person to the entire teaching staff at her son's school. It's really beautiful.

Thanks for posting that. I'm glad to have read it. That should be handed around to every parent in every class with a special needs kid.

In less than 5 years, that will be every class.

Dr. Jeffrey Kahn of Austin Ear Nose & Throat should be made aware of what his incompetence has caused in some way.

You're a fighter Clod, I admire the crap out of ya.

Damn right and next time you see your friend tell her that I'd like to share her letter with some people out my way. PM if you prefer.

She's already said she's happy to share it with anyone who needs to read it, or I wouldn't have posted it on the open internet. Feel free to pass it on wherever necessary.

Just when you think you know at least one tiny thing for sure...

Fragile X is one of the few testable, confirmed genetic diseases, present from birth, that accounts for approximately 5% of autism cases. Some parents do not try biomedical treatments because they have had the genetic testing and know for sure their child has Fragile X, and many more parents assume they shouldn't bother with the genetic testing because their child is responding to biomedical treatments.

Except it turns out that, quite surprisingly, the symptoms of Fragile X actually respond to antibiotics.

Lessons for the day:

1.) If a parent says something is working, don't fucking dismiss them. Figure out why it's working.

2.) Overuse of antibiotics may have even more significant implications for our population beyond breeding superbugs.

Dear Clodfobble:

I'm sorry I have taken so long to acknowledge your great work here and your even greater work as a Mom. You're awesome.

I'm tired of being awesome. I want to be normal, and smile, and sleep on occasion.

Sleep would be especially useful tonight, as I will almost assuredly be pulling an all-nighter in the hospital tomorrow night. If I'm lucky, they'll decide non-stop screaming is bad for his throat healing, and sedate him again in the evening.

Oh God.
My heart goes out to you. It really does.
:heart-on:

We're home from the hospital, and tonsil recovery is going well! We're still having to do some pain management with the hydrocodone prescription, which makes me very anxious and I can't wait to get off it. A supposedly 4-hour dose lasts in his body for about 10 hours, which is inherently concerning, but we are very careful not to give him more until we're sure the previous dose has worn off. Without it he's in agony, but with it he is scratching obsessively at his neck and feeling nauseous. But enough cognitive improvements have already begun to peek through that he's starting to accurately report where his pain level is (as opposed to the binary scale we're more used to, either playing happily or screaming on the floor about needing to eat Rice Chex,) so that's helpful.

The other new thing is he's noticing smells for the first time in his life. He keeps talking about this smell and that smell, and sniffing things curiously. The funniest example was the first night we were home: Mr. Clod keeps a stash of little candy bars in the cabinet that he can usually be found snacking on before dinner is ready. (To make up for all that healthy food I make him eat nowadays, you know.) Anyway, he had just eaten one, and a minute later wandered over to answer Minifob's call for someone to fix his transformer truck again. As soon as he got near, Minifob startled and said, "You ate... that cookie!" with wide eyes. Before he could respond Minifob decisively walked away, wanting nothing to do with him until the smell wore off. We're both very pleased that he was so offended/uncomfortable with Mr. Clod's food choice. :)


In other news, MTV has a show called "World of Jenks," and in each episode the host/filmmaker spends a week living with someone whose life is completely different from his own. During this episode he spends a week with a high-functioning but dependant 20-year-old with autism, and it's a nice, in-depth look at what this kid's real life is like, if you've got 22 minutes to spare. Touching but sad. We've sufficiently altered Minifob's trajectory at this point that we can be certain this will not be his future, but Minifobette's is still too short to know.

She may be on the verge of a big breakthrough though--she's suddenly started having semi-formed bowel movements for the first time in 4 months, which is fantastic. I was actually on the road when the first one happened, and Mr. Clod sent me a photo on my phone. Because of the recent tonsil chaos, we've not been able to be as meticulous about changing only one thing at a time for her, so we're not actually sure if the improvement is due to the recent removal of some potential allergens from her diet, the switch to a new type of digestive enzyme (which is also doing somewhat better for Minifob as well,) or the start of yet another antibiotic round. But we'll have a chance to figure it out soon, and meanwhile we've seen a huge jump in language, up to about 30-40 words. It could keep going up, or it could plateau again in a couple weeks, we have to wait and see.

It's nice to hear an upbeat post from you. :D

Doors - aha!
Explains why a pupil in my previous class was obsessed by them.
G either had to be at the front of the queue to open them, or at the back to close them.
There were other symptoms of course.

As always, thanks for such personal insights into your life.
This week I read a mystery novel which featured an autistic child - purely because of you. The author's eldest child is autistic. It was a decent story as much as anything, as well as opening up the various symptoms and the way a mother feels about them. It wasn't amazing, but if you're interested it's Eye Contact by Cammie McGovern.

I doubt you have any spare time though!

Today was a weird day.

It started off with a fantastic parent-teacher conference, in which the teacher confirmed what we've believed for awhile now, that Minifob will absolutely be ready to be mainstreamed by Kindergarten, most likely with minimal or no support. We haven't had him officially evaluated since the pediatric neurologist told us there was no need to come back late last year, but I'm feeling confident that we're going to lose the diagnosis entirely within another year or two. He has full conversations with me now, can relate stories about what happened to him at school that day, and will casually correct me when I get small details wrong. The teacher marveled at how far he's come in the last year and a half, "but he's one of my diet-vitamin kids, so it's not really that surprising." She's not legally allowed to tell me anything about any of the other kids, but of course I know the other biomedical moms in the class, and we all agreed to mention at these conferences that we'd like our kids to be mainstreamed together into the same classroom, so they'll start out with someone they know on the first day--and also so we can have our own little enclave of class party food trays, too. :)

But later in the morning, things went south as I spent no less than 45 minutes on the phone with the insurance company, arguing over a claim that we originally submitted back in July. By now, about half of their call center employees remember me when I call. This one had the decency to acknowledge that the error this go-round was clearly theirs, and made no sense whatsoever. The claim has returned to the mysterious people "in the back" for a second appeal, and I have updated my notes to reflect a new call back date in 21 days. So it goes.

Things continued sharply downhill after that, as Minifobette once again designated today to be a Day for Screaming. She's teething, and really coming into her own with regard to the autistic version of the Terrible Twos. I've actually been shocked at how many of Minifob's old traits have suddenly appeared in her, when up until now she's been the polar opposite of him in pretty much every way. She's turned violent and sleepless, and her language has taken a nosedive again too, but I'm really, really hoping that this is mostly due to the teething pain, and she'll come back around when it eases up. You know that numbing Orajel stuff you can put on babies' gums? It infuriated her. I put it on once and she completely freaked out at the sensation, shoving her hands in and trying to claw off some imaginary thing at the back of her teeth. I hadn't clipped her fingernails recently, so she actually made herself bleed doing this. Fan-fucking-tastic.

Then unexpectedly this evening, I got a FutureMe email that I wrote one year ago, inspired by this thread. It served to again highlight how far Minifob has come... and again how Minifobette has just inched along. We've been treating the two of them for almost the same amount of time, more than half her life in her case, and she doesn't have very much to show for it. I've gone back and looked at Minifob's initial school evaluation from April of 2009, and I'm certain that Minifobette is still going to rank lower when it's her turn in another month or two. Of course there's no way to know how bad off she would have been without treatment, and the general rule is that kids who have a severe regression (Minifobette) are significantly worse off than those who are weird from very early on (Minifob.) But I want two recovered kids, not just one. I guess with one in the bag, though, I'll have more time and resources to devote to the other, so there is that.

Well, the only thing I can think of to say is that at least you don't suck at relationships.

Dat true, and also the ability to deal with insurance, medical, and educational professionals, with out going postal. No mean feat, that. :thumb:

Hang in there Clod ... You are doing a great job. There is so much to deal with, that many times it seems overwhelming, but you ARE doing it all.

It's the little things that show you times are changing.



This morning I had to get back on the phone with the insurance company because they denied a random claim on the basis that one of my codes was no longer considered valid by the American Medical Association. Turns out it was the diagnosis code that they were suddenly taking issue with, which was especially strange as we file, oh, a half-dozen claims a month with this code. The code is (or was) 299.0, autistic disorder.

In the most recent code updates, the AMA saw fit to distinguish this into two new categories: 299.00, autistic disorder current or active state, and 299.01, autistic disorder residual state.

It's a fundamental acknowledgement that kids are recovering. Of course they don't say this to journalists, and they don't say it to ignorant pediatricians, and they don't say it to the parents who are still not seeking effective treatments for their kids. No, they only say it to the insurance companies, because of course they're going to want to know if they shouldn't have to pay for a procedure if the condition is residual...

Time flies and drags at the same time. It was one year ago this month that we took away all of Minifob's food and put him on an elemental formula diet. During the three months he was on it, he gained 4 pounds, having not gained any weight at all for at least 6 months prior to that.

But since going off the formula, he has again not gained a single ounce, despite the fact that he eats 5 adult-sized meals a day. No weight gain in 8 months is something even mainstream pediatricians can believe in. So happy anniversary, he's going back on formula. Not exclusively; we're hoping to supplement his food with 3 drinks a day, which would be about half of his expected nutrient intake. The good news is we can switch to a less super-hypo-allergenic brand, since he'll be having real food alongside it anyway. This means that a.) it will taste better, and b.) it comes ready-made in liquid form in a brightly colored juice box thing, instead of a can of powder I have to spend all day scooping and mixing. With any luck insurance will still cover supplemental medical nutrition like they covered complete medical nutrition.

In other news, baking soda is my new best friend. Our gastroenterologist recommended it for suspected reflux, said it was both more effective and safer than prescription meds like Zantac. 1/2 teaspoon mixed in water twice a day, and Minifobette is sleeping much, much better at night. She eagerly drinks the stuff and asks for more. And at the same time, we've started to get a few 2-word phrases out of her. Hooray for less stomach pain!

Isn't the reason he hasn't gained weight, that he's not getting the nutrition out of it? Or he's not getting most of the nutrition from it?

Yes, it's because he isn't able to absorb most of what's passing through there (which is also why his body keeps telling him to eat, eat, eat. It's full but it's not nourished.) But taking away all food is psychologically and socially difficult, so we're okay with the idea of letting him continue to eat food while he's getting the formula nutrients as well, even if he's not getting much out of it.

The hypoallergenic nature of the formula is a separate concept from the nutritional side--having everything broken down is good for absorption, but it's also what you need if you're having allergic reactions to every food that passes through there. The allergies were our primary concern the first go-round, though the nutrient absorption was obviously a bonus. But since his food reactions have been holding steady (not great, but steady,) it's okay if he keeps eating food, and if the formula has, for example, sugar and grape flavoring added to it.

Minifob has a conversation with Mr. Grasshopper.



I no longer have to explain to people in public that he's autistic. We are getting closer.

wow - thats awesome

OK, Mr. inappropriate here. I know this is about Minifob's awesome recovery and that he is the star of the show, but I can't get over what a lovely voice you have, and I'm really a visual person, not an audial one. Still, I could listen to your voice all day. Unless you were saying stuff like, "Would you take this to the compost?" or "Did you email so and so about the Dingus?" "Have you seen the checkbook?"

That would probably get old. Even with your voice.

Well if you know anyone who wants to pay, it is indeed still for sale. Schedule's pretty wide open...

I'm saving my quarters...

No matter how much you adore that voice, there are some doctors, somewhere, that are sick of it. :haha:

Nicely played.

Clod it's wonderful to see and hear him.
On a complete aside, I'd have sworn at the beginning of the clip he was saying Mummy not Mommy. I thought - what? A British-American? He clearly said Mommy later though.

His progress is a tribute to you.
And yes, you do have a lovely voice.

Yeah, his vowels still wander around a bit. Plus, so much of his speech is/was learned by imitation, I wouldn't be surprised if he'd specifically picked up a bit of the "Mummy" sound from watching Charlie and Lola. He also thinks that the name of the dog (Sizzles, which they say sizz-ouws) is in fact Scissors.

Thats perfectly normal though - Friends kid calls his big sister "Cake" her real name is Cait, as in Caitlin.

What he is doing is nothing short of amazing and is a testament to what an great mom he has.

You should have heard what my brother did to "truck".:rolleyes:

You should have heard my first grade rhyming story when I had to find a word to rhyme with "luck."

After just 3 weeks of supplementing with 1-2 boxes of the elemental formula a day, Minifob has already gained 2 1/2 pounds. Hooray! A full day's worth of calories would be 7 boxes, so he's not even getting that big of a daily percentage out of it, but it's been enough to take the edge off his hunger as well. We're down to just three large meals and one snack a day.

Also, technology is so useful. I personally haven't used the app, because 1.) I don't have an iPhone and 2.) I'm quite used to my stacks of notebooks anyway and wouldn't want to bother adapting my own shorthand. But I know some folks who are less obsessively organized, and this has been extremely helpful for them.

Oh, ha ha. Joke's on me.

"What's that?" says Mr. Streptococcus. "You think you can destroy my lovely Tonsil Towers Condominiums, and raze my Adenoid Townhouse to the ground? Well fuck you, Clodfobble. We'll just start slumming it up on Ocular Beach instead. How you like them apples?! Merry Christmas kid, Santa brought you a raging case of Pink Eye."

Hope the pinkeye makes the world look Rosy for them.:(

or as one of my guys called it last year cajunkintheeye. Sorry Clod...

:lol: The nice thing is it doesn't really hurt, he just gets a little frustrated over the extra crusties. On the other hand, the symptoms are gross and quite visible, so our trip to the inflatable bouncy place had to be postponed. But I'll still take cajunkintheeye over agonizing throat pain any day.

1 -- my sympathies.

2 -- your description sounds like dialog from lost reels of one of our favorite movies, Osmosis Jones. I give it five stars. You, and probably minifob, would love it.