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BigV 04-20-2012 02:59 PM

Overall, I am so happy to hear this good report. A couple excerpts and comments.
Quote:

Originally Posted by Clodfobble (Post 807494)
snip--

Sorry, got a little maudlin there for a moment. It's been at the forefront of my mind recently because it's ARD/IEP season, which is to say, the meetings at the end of the school year to talk about each special ed student's progress and goals for the next year. This is the time when parents in denial have the school throw the facts in their face, and parents who aren't in denial get told that, sorry, the school doesn't have any money to help them anyway.

Yes, that season again. Maybe I just don't get out and mingle with the other parents like you do, but I never really got to see the reactions of the other parents, or I just didn't notice them. Although, upon reflection, I can see (now) a lot of what you describe in Tink's actions when it comes to parent-teacher conferences/interactions/meetings. Some people just don't take adverse news well.


Quote:

Originally Posted by Clodfobble (Post 807494)
The little boy I babysit after therapy ...snip...Then she sadly admitted to me that she does think maybe she's seen Minifobette surpass her son in skills this last year (Oh? You think? My daughter who has normal conversations and real friends and hasn't had diarrhea in over a year?) And when she pushed me hard for details about our ARD,

nosy? or just comparing notes? This woman is a frustrating and annoying puzzle to me. It's like she recognizes the magnitude of her problem and the corresponding responsibility she has and upon realizing it, runs screaming (back) into unreality. A tv show? orly?

Quote:

Originally Posted by Clodfobble (Post 807494)
I had to admit that, yes, they have every expectation that Minifobette will be fully mainstreamed with no aide.... and then she changed the subject and excitedly told me about this "really fantastic" new TV show called "Touch" which presents the main character's autism as a genuinely supernatural power and implies that he is here to carry out a spiritual mission. Right... let me know when the TV show glorifying schizoprenia comes on.
***start***



***end***
ANYWAY. Yes, Minifobette's kicking it. :)

I love this (unboldable) part of your response to her. What a maroon, and what restraint on your part. I wonder what happened in that blank... eyerolling? big sigh? counting to ten? a hundred? Regardless--High five!


Quote:

Originally Posted by Clodfobble (Post 807494)
It became clear that while the supplemental formula he was on was great for his digestion, the artifical sugars were affecting him neurologically, and given the choice I would clearly rather have his brain and work on his gut instead of the other way around.

good choice, I would make the same choice, I'm glad together you were able to take your "five steps".


Quote:

Originally Posted by Clodfobble (Post 807494)
The school ran a full barrage of third-party evaluations on him to see how things stand (they were required by a complicated mandate to do so, otherwise they wouldn't bother,) and the results were interesting.

been there, done that, keep up the good work sister.

Quote:

Originally Posted by Clodfobble (Post 807494)
He still struggles with speech because, as the evaluator wrote, "the oral motor faculties aren't able to perform at the speed at which his thought processes are moving."

I totally know how he feels, this happens to me all the time.

Quote:

Originally Posted by Clodfobble (Post 807494)
So hopefully by then I can post some pretty pictures of their lesion-free, pink, round, healthy small intestines. :)

Pics or it didn't happen. Actually, pics of giant ringlets would be even more welcome, if you're amenable. :)

Sundae 04-21-2012 10:53 AM

Glad to hear your update Clod, especially the progress Fobette is making.

I can't write any updates about Tiger at the moment.
Suffice to say I do write them and delete them.
All is not rosy in my LSA garden. There is someone that needs a kick in the cunt.

Clodfobble 04-21-2012 11:18 AM

Quote:

Originally Posted by BigV
Yes, that season again. Maybe I just don't get out and mingle with the other parents like you do, but I never really got to see the reactions of the other parents, or I just didn't notice them. Although, upon reflection, I can see (now) a lot of what you describe in Tink's actions when it comes to parent-teacher conferences/interactions/meetings. Some people just don't take adverse news well.

Yeah, it's the mingling that does it. I really hate this phrase, but I'm "active in the community." Messageboards, a couple groups that meet in person, and aside from the carpooling I see all the other parents at our particular therapy clinic every day before and after. And because autism often prevents parents from leaving the house with their kids at all, it's very isolating, and so we all cling to each other and pretty much talk about nothing but autism crap all the time. Which is good, but not good, too.

I actually came to the decision awhile back that I simply won't attend ARDs anymore. It is deeply unhealthy for me. Mr. Clod has no problem with confrontation, and no problem being the passive-aggressive negotiator. I can't do that. I fumble when put on the spot, I get emotional, and then I spend the next 6-9 months fuming about all the things I should have said to those people. The kicker was the ARD for Minifobette that was, unfortunately, scheduled for the exact day last year that my kids were doing their cleanout for their colonoscopies the next day. So I was already frazzled that morning, having to deny my kids anything but clear liquids for a day, and then the advocate that we'd hired to fight this particular battle for us screwed up and had to only be present over the phone, which is like not being there at all. They had brought in an upper-level biatch to stonewall me, who is known for deliberately saying infuriating things like, "As a parent, I completely understand how you feel," because she knows damn well that if she can get you to scream at her (as I know for a fact that three friends of mine have done) that her kids aren't disabled and she doesn't know a damn thing, that she's gained the upper ground in the negotiations. Anyway, first I sobbed, and then I started inappropriately sharing the difficulties my daughter was having at the time and why no one in that room could even understand, and ultimately I completely checked out and gave everyone a dead-eyed stare for the rest of the proceedings. Her teacher hugged me afterwards and apologized so many times, because of course she was powerless too and had to just sit through it like the rest of the people who actually want to help these kids. And I went home and told Mr. Clod that he's doing them from now on, period. I will not go. And he's really good at being a quiet, unperturbable bastard, so it works out for everyone. :)

footfootfoot 04-21-2012 03:52 PM

Do you think minifobette is doing better because she started the regimen earlier than her brother?

xoxoxoBruce 04-21-2012 05:51 PM

OMG, added to Clodfobble's accomplishments... she's Frieda's mother. :lol:

The mother of the boy doing badly, is she the one you talked about that was in denial saying he'll grow out of it?

Clodfobble 04-23-2012 12:42 PM

Quote:

Originally Posted by footfootfoot
Do you think minifobette is doing better because she started the regimen earlier than her brother?

Yes. She was actually on a path to be much more severe than he was. Generally speaking, the later the regression happens, the worse they are. But she was gluten-free and dairy-free even before her big regression hit at 12 months (compared to Minifob, who was showing significant symptoms by 3 months--significant in retrospect of course.) She lost everything, all awareness, speech, and eye contact; whereas he always kept pretty good levels of all of those.

Quote:

Originally Posted by xoxoxoBruce
The mother of the boy doing badly, is she the one you talked about that was in denial saying he'll grow out of it?

He's the one who poops on my carpet, and his mom vacillates between "he's very close to normal" and "he's completely different and unique and that's a good thing."

DanaC 04-23-2012 12:45 PM

Quote:

Originally Posted by Clodfobble (Post 808069)



He's the one who poops on my carpet, and his mom vacillates between "he's very close to normal" and "he's completely different and unique and that's a good thing."

Yeah...maybe, like he's just an Old Soul ;p

Clodfobble 08-18-2012 12:27 AM

New newness on Minifobette's front... We've suspected since she was 18 months old that she has vision problems. I was in glasses by the age of three, so the genetics were ripe for it. They have neato machines now that can just scan the topography of your eye and tell you your prescription, not like in my day where you couldn't even test a kid until they reliably knew the alphabet. But she's always passed the basic vision tests just fine, and her scanned prescription was a little nearsighted, but not enough to justify glasses for a toddler. Still, she squints constantly. But they always told us to come back when she's older and more responsive to testing.

Well, she is now. And after a full barrage of tests by the developmental optometrist, the results are that her focus is still basically fine--but her eyes have a tendency to wander independently instead of working in tandem, and she is suffering from significant double vision at most distances. The doctor showed me how she could cover one eye, and after a moment pull it away, and her covered eye would have drifted off to the side and have to return back to the middle to see whatever the other eye was focused on.

At its root, this is a muscle tone problem, which is a universal thing with her. But I've been told by the optometrist as well as other parents that "vision therapy," which is to say exercises similar to what they do to correct lazy eye, will help dramatically, and will likely improve her eye contact and general demeanor as well, since constant double vision is assumed to be causing headaches and a certain amount of daily frustration.

So that's one more recurring doctor's appointment to add to the schedule for the foreseeable future, but at least we've found another problem that has a definitive solution...

Sundae 08-18-2012 04:33 AM

Quote:

Originally Posted by Clodfobble (Post 824950)
So that's one more recurring doctor's appointment to add to the schedule for the foreseeable future, but at least we've found another problem that has a definitive solution...

One problem at a time. Good for you and Fobbette.

BigV 08-18-2012 08:26 PM

tags:

autism, food intolerance, and now eye push ups.

poor kid.

xoxoxoBruce 08-19-2012 10:29 AM

But when she becomes the first Miss America with three PhDs, it will be worth it.

Clodfobble 10-05-2012 05:31 PM

Most terrifying hurdle for Minifobette yet.

She's started engaging in self-injury. It began with one small cut on her face about 6 months ago. She kept picking at it, and it took 2-3 months to heal properly (there is still a mark from it even now.) But we thought it was an obsessive thing, not a pain thing. Then awhile back she got a handful of mosquito bites while we were outside on a humid day, and she picked at those until they bled, then picked the scabs off the next day, and is still picking at those same scabs even now. Recently she's added another couple of bug bites to her collection, and also two small scrapes on the tops of her feet from tripping at the pool.

She picks at them all constantly, and when we've tried to stop her she gets furious and screams "I need to hurt!" And even if we force the matter and stay on top of her every minute of the day, when we get her up in the morning her sheets are dotted all over with blood. She pulls off bandages, rolls up long sleeves, and hides where we can't see her in order to tear all her scabs off.

I don't want to put a fucking 4-year-old on anti-anxiety meds. I also don't want to see my daughter's face streaked with blood every day. And I know that the process is addictive: the more she substitutes physical pain for emotional stress, the more she'll need it. So there's something to be said for nipping it in the bud now. But Christ.

orthodoc 10-05-2012 06:12 PM

My second son (autism spectrum/Asperger's, early onset bipolar, PDDNOS, the diagnoses changed with doctors and time) went through that process - you're right, it's obsessive behavior and very hard to redirect. It may need some temporary meds to help break the cycle at night, but hopefully you can work out a way of redirecting in the daytime that will help ...?

These things are tough. Sorry it's going on.

Griff 10-05-2012 07:21 PM

Quote:

Originally Posted by Clodfobble (Post 833159)
But Christ.

Rough deal Clod, sorry.

glatt 10-05-2012 07:24 PM

Our daughter in 8th grade has been having trouble with picking scabs, and although she hasn't given any signs that she likes the pain. It's just some sort of compulsion. She couldn't stop herself from picking, and felt self concious with a dozen bandaids over all the bug bites.

We ended up getting liquid bandaids and applying it every day or a couple times a day. She would still pick at the liquid bandage, but the scab underneath would have time to heal. The liquid bandage was basically a sacrificial layer. I'd suggest trying the liquid bandages. It's kind of a long shot if she really is looking for pain, but it might work.


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