My Kid is a Damn Nutter

[monster]

Originally Posted by Clodfobble

this probably means they'll drop them at school/therapy tomorrow, and maybe this is weird but I kind of want to save them as a souvenir. Cleaned, of course..

Can't you lie and say you have to keep them so please have them poop in potties and save it?


ok, maybe not....

[Clodfobble]

That is definitely something I would do... if I hadn't already mentioned several weeks ago that the pill cams were disposable.

I did, however, get Minifobette's back, and learned in the process that they float, so I know I haven't missed Minifob's yet. He says he didn't poop at school, and he's generally accurate about that sort of thing because he likes to tell me which bathroom he used each time at school. But I'm actually getting a little concerned because he has pooped three times now, and by definition the food all went in after the pill cam. So now I'm imagining it stuck at some swollen stricture, his generally liquid poop just flowing right around it, never pushing it out. They said not to be concerned if it takes 2-3 days to come out, so I guess it's not hugely dangerous if it gets stuck for awhile, but still.

[footfootfoot]

that is so crazy small and incomprehensive...

(You keep using that word. I do not think it means what you think it means)

[Nirvana]

Wow just wow!

[xoxoxoBruce]

Originally Posted by Clodfobble

The main hurdle was finding a doctor who wouldn't just pretend it didn't exist,...

That's infuriating.

[Clodfobble]

A sample of what a 3-year-old autistic child's mind is like:

For the last two days, my daughter was refusing to eat. She would drink her pureed veggie smoothie-esque things I make for her, but no solid food at all unless I spent half an hour forcing each bite in amidst screams.

We ran through all the possibilities: sore throat, her cavity has suddenly reached the point of being painful, some sort of new indigestion with something making her afraid to eat anything... of course she wouldn't fucking tell us a thing, just lay silently on the couch in a low-caloric daze and freaked out anytime food was suggested or offered.

So just now, I figured it out. Two days ago--the last time she willingly ate food--she had eaten out of her lunchbox at the kitchen table, because my mom was watching her for a few hours and wasn't up for preparing her food, so I packed it before I left. Apparently, Minifobette wishes to eat all of her meals out of her school lunchbox from now on. As soon as I showed her the food inside it, she bolted into the kitchen and scarfed it down. But attempting to communicate that to me was impossible, as was allowing herself to eat the exact same foods on a plate once she'd decided the lunchbox was the way she wanted it. Letting herself starve was the only option she could come up with.

[limey]

Oh God, CF! How do you cope?!

[Griff]

Holy Carp!

[footfootfoot]

Sounds like a Turbo 3 yr old. Ours recently went on a hunger strike and wouldn't say anything, finally mrs foot figured out that the pancakes weren't cut properly or something crazy like that.

It is maddening.

[morethanpretty]

Originally Posted by Clodfobble

After a week-long maelstrom of countless phone calls, it's all been settled. Mr. Clod is going to Minnesota on May 9th to get a big chunk taken out of his leg at the University. It turns out it is a pretty big chunk indeed--several stitches and mild scarring are expected--but I honestly think he's kind of happy that he can be the one to do/endure for the kids, for once. Testing is done immediately, so we'll have confirmation that we can go ahead with the kids' procedures before he even gets back on the plane. We got ourselves approved for an "in-network exemption" through insurance, which means it's completely covered, and my mom is giving us air miles she was never going to use for us to fly him up there. It's worked out as well as it possibly could have, considering.

This is probably better than flying the children to New York for the procedure. Your children might need other medical procedures that require general anesthetic and the medical center that perform that procedure could require the same data this ambulatory center is requiring. This way you have the information already, instead of having to delay to find a facility that will do the procedure in the event they have the gene but you don't know, or having to delay to get Mr. Fob tested so the facility you want to use will have the information it needs to go ahead.

In other positive news, my mother-in-law gave my daughter something similar to this for her birthday. This is nice not because of the item itself, but because she got it "from a friend with an autistic child, and I guess he'd grown out of it." This is the first time she's acknowledged Minifobette's autism in any way, even indirectly. Giving a toy that is at least nominally "meant for" an autistic kid is a huge step for her.

I am jealous of your child, I want her toy.
I don't think you have to be autistic to enjoy that...

[morethanpretty]

Originally Posted by Clodfobble

It did stab me in the chest a little to see just how bad it is, though I'm told it could be much worse. But with the right combination of steroids and anti-inflammatories, along with his continued restricted diet and supplements, I'm told that it's expected to go into full remission. The main hurdle was finding a doctor who wouldn't just pretend it didn't exist, so it that regard we're on the far side of the mountain and it only gets better from here.

It sucks that y'all have to go through all of this, but it is a relief to know I bet. And hey! Full remission has that good of a possibility?! Fucking awesome!

[BigV]

Hi Clod--

Our parenting experiences are different, they overlap but not everywhere. For example, I don't think I would have made the connection you did. I'm smart, you're smart, I love my kids, you love your kids, I pay attention, you pay attention.... My kid would have starved though. I try to think about what I would have done in that situation and I think I would have continued the smoothies, and then tried to force/compel/cajole/trick her to eat the regular stuff that she'd been eating only recently. And then, given up. "She must not be that hungry." True or otherwise, I don't know what I'd have done, short of force feeding her. I (I emphasize *I*) don't believe she (my imaginary daughter) could/would starve themselves. Probably wrong, certainly they can make things much worse for themselves by not eating properly or regularly. I would have concluded that whatever thought process led to such a conclusion could happen again and then food would be "OK" again. And by the same process, who knows, tomorrow something else might be just as inexplicably impossible.

But the insight you describe, I have had some lucky looking guesses in my day, informed by my accumulated parenting instincts, I read what you wrote, and I just don't see myself making the same leap. I'm so glad she's eating again, really I am.

[Clodfobble]

Originally Posted by BigV

I think I would have continued the smoothies, and then tried to force/compel/cajole/trick her to eat the regular stuff that she'd been eating only recently.

This is where we were starting to go (before I remembered the lunchbox,) minus the cajoling and tricking. Standard therapy techniques say you just have to calmly, kindly, give them no option but to [insert whatever behavior you are requiring.] I don't believe that in the end she'd allow herself to truly starve, but I'd have had to take away the veggie smoothies before she could hit rock bottom.

[Spexxvet]

My son's friend is autistic, and when he was about 6 yrs old, he injured the inside of his mouth (I forget how). He hardly opened his mouth for 3 weeks. Didn't talk, and I never saw him eat.

[BigV]

I tip my cap to you Clodfobble, I really do.

There's precious little in my whole life that is more important to me than my kids and my role as their father. I take it as seriously as I can. Naturally, this doesn't mean being a hard case all the time. I goof with them, and play and set adamantine limits which they cannot break (but manage to outgrow and bypass). I'm just dazzled that you pulled that rabbit out of your hat.

When they were little they were *so* cute. And I loved them and was infatuated by their cuteness. I remember being a little wistful, nostalgic as they grew out of little and cute. *sigh* But then I noticed other new aspects that I loved, principally, as they grew older, I traded saccharine cuteness for sage wisdom. I could *REASON* with them. Who of thunk it? And that has become the new awesome. This fades, by the way, as you/I become dumber and dumber as they progress through their teenage years. Have courage, it is temporary.

I'm rambling. You don't need any lecturing from me. I'm just happy and amazed at your story. I love a happy ending.

Yours,