My Kid is a Damn Nutter

[Ibby]

Is he old enough yet to "feel" the difference between when he's doing well, and when, say, you tried wean him off the steroids? That is to say, I would guess (correct me if I'm wrong of course) if an adult who was following the program they're on, and was seeing huge improvement, stopped the program, they would be able to tell the difference - be able to "feel" the improvement slipping away. But I would also hazard the guess that young-enough kids aren't "self-aware" (not the word I'm looking for, but I think you know what I mean) enough to "feel" it - but I don't think i know a single kid, to be honest, so I could be way off base.

[Sundae]

I haven't had a chance to work with H this week - have had a vomiting bug which means I was at death's door yesterday, nauseous this morning, but not allowed into school until Thursday :sob:

Anyway. I've taken on board the idea H might really be embarrassed by an adult singing (as he perceives) to him.
He isn't on the spectrum, he's a child without an official statement who needs extra help.
But that doesn't mean he has to go along with the school ethos.

Because I loved singing and was used to singing every day it was normal and natural to me.
There were probably children in my class who felt like H - it's one thing for a teacher to lead a class in singing, and to sing along yourself, but to have an adult singing AT you is just cringy.

THRASS is a phonics system we use all the way through school, not targeted for lower ability children. So he knows the songs, uses the mat and sings along every day to the songs. And I know he loves singing, from the Nativity.

I'll try speaking the songs first. They are useful.
Example (a few words changed for copyright purposes)

Let's do the cat, kitten, duck, school hand-jive
Cat is C
Kitten is K
Duck is CK
And school is C and H

There's another bit about Queen being Q
It's phonics.

Anyway.
Things to think about.

[Clodfobble]

Originally Posted by Ibram

Is he old enough yet to "feel" the difference between when he's doing well, and when, say, you tried wean him off the steroids? That is to say, I would guess (correct me if I'm wrong of course) if an adult who was following the program they're on, and was seeing huge improvement, stopped the program, they would be able to tell the difference - be able to "feel" the improvement slipping away. But I would also hazard the guess that young-enough kids aren't "self-aware" (not the word I'm looking for, but I think you know what I mean) enough to "feel" it - but I don't think i know a single kid, to be honest, so I could be way off base.

Sort of. It's a catch-22 because when he's feeling good, he is definitely aware enough to know "I felt bad before, and now I feel better." But when he's not feeling good, the comprehension is lost to that critical degree where he can identify that now he is feeling bad again. We try really hard to promote that self-awareness when he's right on the cusp of getting better or getting worse, to ask him to stop, and think about how his tummy is feeling right now, and how his head is feeling, and how the other parts of his body are feeling, and he's making a little progress in that awareness, understanding when he's feeling a little bad, or that he just crossed that line into starting to feel relief. But when we're in the thick of a "rough" period, not a chance.

[footfootfoot]

Originally Posted by Clodfobble

Sort of. It's a catch-22 because when he's feeling good, he is definitely aware enough to know "I felt bad before, and now I feel better." But when he's not feeling good, the comprehension is lost to that critical degree where he can identify that now he is feeling bad again. We try really hard to promote that self-awareness when he's right on the cusp of getting better or getting worse, to ask him to stop, and think about how his tummy is feeling right now, and how his head is feeling, and how the other parts of his body are feeling, and he's making a little progress in that awareness, understanding when he's feeling a little bad, or that he just crossed that line into starting to feel relief. But when we're in the thick of a "rough" period, not a chance.

I'm gonna guess it's probably a lot like why people decide to go off their meds; "I feel great! Don't need 'em"

Uhh, yeah but aren't you feeling great because you're on meds?

[Sundae]

Been there done that as an adult, so it is a lot to expect of a wee bairn.

[Clodfobble]

Plus, it's not like he's the one who chooses to go off the meds or not. He just takes whatever pills I put in front of him. Speaking of which, Minifobette is going to do the pill-swallowing clinic over Spring Break. I am bouncing with excitement.

[footfootfoot]

the pill-swallowing clinic

Ve haff vays...

[ZenGum]

I'm gonna guess it's probably a lot like why people decide to go off their meds; "I feel great! Don't need 'em"

Uhh, yeah but aren't you feeling great because you're on meds?

Each summer I go to a hippy festival and help out in the firt aid tent. About a quarter of the ambulance cases are exactly this.
"It's such a wonderful loving environment, I dont NEED my anti-depressants/anti-psychotics/whatever..."

Usually takes 12 to 36 hours before they're being taken away. Silly buggers.

[Clodfobble]

Originally Posted by footfootfoot

Ve haff vays...

Boy, do they ever. Ain't nothing so pleasantly stubborn as a behavioral therapist.

[xoxoxoBruce]

Ha ha, that insisting with a smile can sure wear you down.

[Sundae]

Followed advice from here with H today.
Spoke the song that would help, using the correct cadence, but not singing.
It got him singing under his breath. He sings well and enjoys it, as I said before. He couldn't get the missing word though, so it's a bust and I won't pursue it now.

We were very silly on one of his wordwall words.
Just before half-term we went through a new wordwall. What with the holiday and my sickness, we only got to review it again today, Other people have read with him, but I am mostly his wordwall monitor.

So before half-term he managed to half sound out coffee. He got coff, but gave the double ee an ay sound, and also gave it emphasis: Coff-AY.
I helped him put it in perspective, and in a few sentences but he did have a giggle about the way he'd pronounced it.

Today we got to coffee and he confidently pronounced it coff-AY. I'm sorry, it made me laugh. That's exactly how it is pronounced in a broad Leicester accent. I didn't intend to do more than grin, but I snickered. H then started giggling because he thought what he had said must be very funny.
So he said it again and gazed up at me with innocent eyes and cracked me up again.
Bad Mrs O.

Mrs J looked over to see what the joke was.
I told her later. As with you, I related it when it was no longer funny.
But I suspect H & I will be mildly amused by it for a while.

My first FORMAL session with Mars tomorrow:
Introduction
Establishing rules
Warm up
Issue being addressed
Review
Cool down/ relaxation

Nervous. Not least because I have been left to scrabble for a private space.
Might have to kick this upstairs. The people I have addressed my concerns to so far have given reasonable ideas of how to solve it, but they aren't realistic ie use a Topic Room: all booked for that time. Hall? Booked. Classroom? Not available until 13.30 (20 minutes into the session) Library? Not condusive to these sessions because people drop in and out.

That's the trouble with starting partway through the school year.
I found that with Tiger last year.
Now I'm working with TWO autistic children and yet expecting them to deal with random spaces. I have a routine with Tiger because we started this school year together. But the times and timing of our sessions have changed three times now and I've had to find us a space every change.

And Mars... we trek around the school looking for space.
No t a great start for a one-to-one.

For the first time in my life I long for summer.
Even if it's raining we can sit in the Gazebo.

Grrrrr for working hours that don't take account of timetables.

[DanaC]

Watched a fascinating documentary last night and thought of you and your fobs.

Louis Theroux: Extreme Love - Autism

In America nearly one child in a hundred is diagnosed with an autism spectrum disorder - a brain disorder characterised by an inability to socialise and communicate.


Louis travels to DLC Warren in New Jersey, one of the most innovative autism schools of its kind, to find out how specialised intervention can help both the children and the families who care for them.

He meets Joey, whose mother Carol is finding it increasingly hard to cope with some of the more challenging aspects of his disorder. In between the ever more explosive tantrums, Louis discovers a cheeky and charming 13-year-old, but there are tough decisions ahead about his future in the family home.

Nicky is 19. After making good progress at DLC Warren he is about to leave, but the prospect of change leads to increasing anxiety and erratic behaviour. Surrounded by a loving family who say they wouldn't have him any other way, he shows Louis his novel Dragonula and invites him to share his first day at his new school.

There were a few other kids. Each very different (obviously!) and facing different challenges and prospects.

What was really lovely was how well Louis seemed to connect with some of the kids. There was real warmth.

But what was really interesting was seeing what the reality is for many parents of children on the autistic spectrum. They didn't really look much at dietary stuff or the GI problems. There's only so much you can do in a single docu. But they did show a lot of the practical issues facing some autistic children and their families. Heartbreaking in places. But also quite tender.

I did find myself sitting there thinking....nooooo don't give them that cupcake packet mix to make in their lifeskills classes... read Clod's blog damnit!

But yeah. Really interesting. Set me to wondering how your littleuns are getting on?

[Clodfobble]

Yeah, it's one of the really frustrating things, when you hear people talk about how severe autism is "just another way of seeing the world," or a gift that should be celebrated... people usually only say this when they have no experience with how incredibly, incredibly difficult autistic behaviors can be.

Nobody ever says schizophrenia is just another way of seeing the world. Yet many autistic people can physically injure others just as well as a schizophrenic can. Plus they may shit their pants while they're doing it.

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.

The little boy I babysit after therapy has made zero progress in the last year, has actually gone backwards in my personal opinion, but his mother was, apparently, unprepared to hear this from the school professionals. They "broke the news" that they didn't see him in any sort of inclusion scenario for Kindergarten, that he clearly belonged in a full-time special ed classroom, which is obvious to anyone who spends 2 minutes with him. But apparently she thought that wiping poop on his face and being mostly non-communicative is close to normal for a 4-year-old. 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, 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.




ANYWAY. Yes, Minifobette's kicking it. Far better than her brother was at this age. Unrelated, but still adorable, her hair suddenly decided to turn curly, and over the last 6 months has gone from stick-straight to giant ringlets. This is also the child who was born with dark red hair that later turned blonde, so we have no clue what's going on with her follicles. She's been able to taper off some of her meds, but some remain persistently necessary, like the high doses of vitamin K, B vitamins, and magnesium. She's still on Pentasa and Oxytocin. She also has struggled with strep a few times, and we're dreading the possibility that the Zithromax will stop working, like it did with her brother, and she'll eventually have to have her tonsils out. But that's for the future.

Minifob is back to a good middle ground after a rough winter. The low dose immune suppressor enabled him to get off the steroids without regressing, which was the goal, and now the goal is to hopefully get him off the immune suppressor. 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. So we cut out the formula cold turkey and tightened down his diet to the same strictness as his sister. This caused significant digestive upset for a few weeks, but we got back to baseline and then beyond, so it does appear that it was the right choice, a necessary two steps back in order to take three steps forward. Overall this means the delta change from the beginning of the school year isn't terribly impressive from a behavior and speech standpoint, but he has at least been steadily gaining in academics the whole time.

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. In math, he has trouble with low-level arithmetic but is way above grade level on abstract concepts like time, measurement, spatial relations. Reading and comprehension are above grade level as well, except he has absolutely no understanding of passive voice. As far as he's concerned, "The baby was kissed by Grandma" is equal to "The baby kissed Grandma," and he thinks we're all insane trying to explain the difference to him. 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."

Long story short, Minifob's disease still requires constant maintenance at this point, but we're getting there. Minifobette is a little better off, moving forward at a more rapid and steady pace. They're both expected to be scoped again in roughly May of 2013, two years after the first scope, to examine progress. So hopefully by then I can post some pretty pictures of their lesion-free, pink, round, healthy small intestines.

[DanaC]

Lookin' forward to that :p

And also looking forward to when both your little ones 'were never really autistic' *smiles*

[Blueflare]

Damn, I wish my parents had been this pro-active when I was a kid, maybe I wouldn't be such a screw-up now. I don't blame them or anything, I'm just saying. I guess the 90s was a different time, recent as it is.
Sorry, don't want to be a downer here... I guess I just wanted to congratulate everyone who's putting crazy amounts of effort into getting the best for their kids on here. Best of luck to you all.