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Source: (consider it)
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Thread: Children with special needs
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Jane R
Shipmate
# 331
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Posted
Sorry to hear you're having problems with school as well, Lamb Chopped. Hope they accept the neurologist's diagnosis. If it was me I'd kick up a stink about my child being labelled as autistic simply for the school's convenience... it does get tiring arguing with them all the time though, doesn't it?
Anyway, Little J went to the clinic today and we saw yet another doctor (we've only seen the head honcho himself once, usually it's one of the junior members of the team). He was sceptical about the benefits of tinted glasses and osteopathy - said we could try them because they won't do any harm, but there was no clinical evidence that they help either. He also prescribed her some different medicine. At the moment she's in bed with yet another attack; the school is hosting an African drumming workshop today, which is not a good place to be if you're having a migraine. Just about to phone my osteopath to see if she can give us an appointment today.
Posts: 3958 | From: Jorvik | Registered: May 2001
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JoannaP
Shipmate
# 4493
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Posted
[Tangent]
quote:
Originally posted by Jane R:
Anyway, Little J went to the clinic today and we saw yet another doctor (we've only seen the head honcho himself once, usually it's one of the junior members of the team).
When my mother saw the head honcho for the second time, she asked him if her annual check-ups were meant to be for her benefit or for the benefit of junior doctors. Since then, she has always seen the consultant or the registrar. ![[Big Grin]](biggrin.gif)
[/Tangent]
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"Freedom for the pike is death for the minnow." R. H. Tawney (quoted by Isaiah Berlin)
"Those who would give up essential Liberty, to purchase a little temporary Safety, deserve neither Liberty nor Safety." Benjamin Franklin
Posts: 1877 | From: England | Registered: May 2003
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Jane R:
Anyway, Little J went to the clinic today and we saw yet another doctor <snip> He was sceptical about the benefits of tinted glasses and osteopathy - said we could try them because they won't do any harm, but there was no clinical evidence that they help either. He also prescribed her some different medicine.
There are some research studies on the use of FL-41 tinted glasses, and some of them look to me like they're reasonably well designed. Of course, even the most supportive research doesn't suggest that they'll prevent all migraines for everyone. But then, none of the prescribed pharmaceuticals or supplements help everyone, either. We're not looking for a magic bullet. We're looking for something that will help, at least a bit. If we combine enough things that each help a bit, then maybe we'll eventually end up with a combination that allows Littlest One to be reasonably functional.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Jane R
Shipmate
# 331
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Posted
Sorry, I didn't mean to sound as if you shouldn't try these things, Josephine - after all, I myself ignored the specialist and hauled Little J off to the osteopath this afternoon because I know from my own experience that osteopathy can help with some problems. Like you, we are getting slightly desperate here.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Nick Tamen
Ship's Wayfaring Fool
# 15164
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Posted
quote:
Originally posted by Ruudy:
Do any of you have books you would recommend that teach parents how to respond to ASD traits? One question I am wondering is whether we should name it to him. Is there any reason I should not just go ahead and call it "monologuing" and point it out to him? We have not hesitated to name other behaviors when they arose.
Ruudy, as to your first question, to be honest, the books that I found most useful were books written by adults from adult perspectives. Yes, I had to "translate" some to child/teenager, but what I found invaluable was their own descriptions of how their minds work and how they taught themselves. Two books I have particularly found helpful (and encouraging) are Be Different: My Adventures with Asperger's and My Advice for Fellow Aspergians, Misfits, Families, and Teachers by John Elder Robison and The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man's Quest to Be a Better Husband by David Finch.
As for your second question, if you think naming things like monologuing will make sense to your son, then by all means do.
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The first thing God says to Moses is, "Take off your shoes." We are on holy ground. Hard to believe, but the truest thing I know. — Anne Lamott
Posts: 2833 | From: On heaven-crammed earth | Registered: Sep 2009
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Jane R:
Sorry, I didn't mean to sound as if you shouldn't try these things, Josephine - after all, I myself ignored the specialist and hauled Little J off to the osteopath this afternoon because I know from my own experience that osteopathy can help with some problems. Like you, we are getting slightly desperate here.
Oh, I'm sorry, Jane! I wasn't talking back to you. I was talking back to your specialist and the specialists here who haven't been able to provide the help we need. I'm just frustrated. I'm so sorry it sounded like I was taking it out on you!
Did the osteopath think he'd be able to help?
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Lamb Chopped
Ship's kebab
# 5528
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Posted
I am such an idiot. Following up on some of the things the doctor said, i asked LL how often he felt bored in school. Quick answer: "90% of the time." ![[brick wall]](graemlins/brick_wall.gif)
I never asked, and he never volunteered. Gotta do something. No wonder he's ticcing so much.
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Lamb Chopped:
I am such an idiot. Following up on some of the things the doctor said, i asked LL how often he felt bored in school. Quick answer: "90% of the time."
I never asked, and he never volunteered. Gotta do something. No wonder he's ticcing so much.
If a child is bored 90% of the time, you definitely have to do something about it. But you've got to be careful -- "bored" doesn't always mean what you think it means.
We automatically think that kids are bored when their schoolwork is so easy that doing it seems pointless. And that's sometimes the problem. But not always.
They may say that they're bored when the work just doesn't make sense to them, or if the work is so difficult that attempting it seems pointless. It's easier for some kids to say, "it's boring," than to say, "I don't understand what I'm supposed to be doing" or "it's too difficult for me to do."
And kids will also call it boring when the work-to-payoff ratio is out of kilter. So if the child needs glasses, they might not realize that they can't see properly. But they know that reading is a struggle. It's a lot of work, and no fun, and none of the strategies that anyone suggests makes it any better. It's just impossible to engage with words you can't see well. So, if you don't know you can't see well, you call it boring.
There are loads of other reasons for a child to consider the schoolday boring.
And you probably realize all of that. But just in case ...
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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birdie
fowl
# 2173
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Posted
Hugs to you LC. We have had those moments.
So frustrating not to have known before - but you have asked the question now, and you know. So that's a good thing.
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"Gentlemen, I wash my hands of this weirdness."
Captain Jack Sparrow
Posts: 1290 | From: the edge | Registered: Jan 2002
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Jengie jon
Semper Reformanda
# 273
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Posted
I have written something and then taken it away several times. I am not a doctor, I am a migraine sufferer, the diagnosis in my case is depression migraine and at my worst I was getting them about once a week. The range of symptoms do not surprise me and I have had a fair number myself.
Jengie Jon's first rule of migraine treatment, if it works for some there is also a good chance it makes it worse for others. I am making no promises. I made this rule after cider vinegar triggered some of the most severe ones I have ever had.
These are just some of my notes on how my handling has worked.
One thing that migraine is often linked to is food/water intake. Theory suggests that a little often might be better than big meals. Long gaps seem to be pretty common trigger, including in my case I realise some childhood migraines (stomach ones so not picked up as such).
Secondly I have had cranial osteopathy and though nervous about it (see first rule) it was if anything positive. As to the lens I am not ruling them out, my father definitely has light triggered migraine.
Thirdly I find (and a small group of others have told me they also find) magnesium supplements help prevent them. Technically the only medical proven effect of magnesium is bathing in epsom salts during one has been shown to relieve it. However the complementary medicine people do suggest it but not really for children.
Fourthly I know that over sensitivity to sound means that if I am in a noisy environment too much then I can easily trigger migraine.
As a rule of thumb migraine are complex and a matter of reducing a number of elements until the sufferer is managing to handle life.
Jengie
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"To violate a persons ability to distinguish fact from fantasy is the epistemological equivalent of rape." Noretta Koertge
Back to my blog
Posts: 20894 | From: city of steel, butterflies and rainbows | Registered: May 2001
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Jane R
Shipmate
# 331
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Posted
Well, we're trying to get enough water and food into her. It helps that she likes to eat a healthy diet anyway (prefers fruit to sweets and cake, unnatural child), but the nausea makes it hard for her to motivate herself to eat, even when she's hungry. My main concerns at the moment are exercise and sleep. She can't get to sleep when she's having an acute attack and she doesn't feel like exercising either.
The osteopath (it's a she, btw) didn't actually do much cranial work yesterday because it was too painful for Little J, but she worked on her neck, shoulders and upper back. Not sure whether it's made a difference yet... will keep you posted.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Curiosity killed ...
Ship's Mug
# 11770
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Posted
Nausea recommendations (from CFS/ME experience) - ginger and peppermint can often help. We drank a lot of ginger and peppermint tea (with a bit of honey), sucking peppermints or chewing sugar free gum, a ginger biscuit, ginger beer - they all seem to help. We went through it before medications were offered, nowadays there are medications to take too.
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Mugs - Keep the Ship afloat
Posts: 13794 | From: outiside the outer ring road | Registered: Aug 2006
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Curiosity killed ...:
Nausea recommendations (from CFS/ME experience) - ginger and peppermint can often help. We drank a lot of ginger and peppermint tea (with a bit of honey), sucking peppermints or chewing sugar free gum, a ginger biscuit, ginger beer - they all seem to help. We went through it before medications were offered, nowadays there are medications to take too.
Peppermint and ginger are helpful here, too, but migraineurs should be careful with sugar-free anything. Nutrasweet (aspartame) is, for some people with migraine, an extremely potent trigger.
And it's not just in sugar-free things. You have to be careful with any chewing gum or breath mints; some include both sugar and aspartame. (That one got Littlest One -- he thought Doublemint gum was safe. It isn't.) And you have to check the label on anything that says "reduced calories" or "light." Yogurt is often sweetened with aspartame.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Lamb Chopped
Ship's kebab
# 5528
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Posted
Thanks, Birdie.
And Josephine--he makes straight A s without even studying. And I haven't hit a college topic yet in my tutoring (of others) that he hasn't managed to pick up.
Frankly, people, I'm scared. There doesn't seem to be much provision round here for kids who are behind on social skills and wildly ahead on mental stuff. I'd homeschool, but can't afford daycare.
ETA: I don't think I mentioned it, but it took me a month to work out that his English teacher has told special ed he can't do expressive writing--because his mother does it for him. ![[Mad]](angryfire.gif) She put it much more delicately than that, of course, but the implication is clear when you pay attention. I guess my own social skills are not what they should be, if such an insult slid by for a month.
[ 25. November 2012, 22:30: Message edited by: Lamb Chopped ]
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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Jane R
Shipmate
# 331
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Posted
Lamb Chopped: quote:
I don't think I mentioned it, but it took me a month to work out that his English teacher has told special ed he can't do expressive writing--because his mother does it for him. She put it much more delicately than that, of course, but the implication is clear when you pay attention. I guess my own social skills are not what they should be, if such an insult slid by for a month.
Honestly, what is the point of teaching our children words of more than one syllable if this is the reaction you get?
I actually logged in to say that Little J has been to the specialist optician to be tested for coloured lenses. It was amazing - she had a migraine when we went in, so bad that the optician had to turn most of the lights off in the examination room before she could bear to take her sunglasses off, and as soon as she had the right colour of lenses to look through she was fine. By the time we left the migraine had gone. PM me if you want more details, Josephine.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Ruudy
Shipmate
# 3939
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Posted
Great news!
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The shipmate formerly known as Goar.
Posts: 1360 | From: Gatorland | Registered: Jan 2003
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Moo
Ship's tough old bird
# 107
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Posted
quote:
Originally posted by Lamb Chopped:
I don't think I mentioned it, but it took me a month to work out that his English teacher has told special ed he can't do expressive writing--because his mother does it for him.
Lamb Chopped, I think you would enjoy this story about Thomas Wolfe, the author of Look Homeward, Ange.
When he arrived at the University of North Carolina as a freshman, he already had outstanding writing skills. He had also studied Latin in high school and loved it. When the Latin professor assigned a passage to be translated, Wolfe gave it everything he had. He figured out the exact meaning of the passage and put it into the best possible English prose.
The professor flunked him for not doing his own work. ![[Frown]](frown.gif)
The next time a translation was assigned, Wolfe used a pony and deliberately introduced errors. The professor said he was glad to see that Wolfe was doing his own work.
Moo
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Kerygmania host
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See you later, alligator.
Posts: 20365 | From: Alleghany Mountains of Virginia | Registered: May 2001
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Lamb Chopped
Ship's kebab
# 5528
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Posted
Aauuugghhhhh!!!! Yes, that sounds very familiar somehow. ![[Devil]](graemlins/devil.gif)
He's just written a second book report for her, and I looked it over with an eye to what she'll see. Complex compound sentences with introductory phrases too--in one case three subordinate clauses, all perfectly put together--and words like "grueling," "fierce," "witnessed," "lopsided," and "chaos" (almost all spelt correctly, too!) and as perfect a thumbnail summary of Harry Potter and the Goblet of Fire as I could write myself, and better than that of any but maybe three of the college freshmen I taught. Not to mention the book is 700+ pages, long, and he is now RE-reading it--for fun.
If she could put the Cruciatus Curse on me, after she reads this one, I expect I'd be writhing.
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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Lyda*Rose
Ship's broken porthole
# 4544
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Posted
Time for the ol' Stanford-Binet test, methinks. If he shows his stuff in a controlled setting with a professional, there should be none of this "mom did it for him" crap.
In other words, become a virago that insists that her baby is a prodigy who deserves to be in a GATE program, and then prove to them you're right. ![[Snigger]](graemlins/snigger.gif)
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"Dear God, whose name I do not know - thank you for my life. I forgot how BIG... thank you. Thank you for my life." ~from Joe Vs the Volcano
Posts: 21377 | From: CA | Registered: May 2003
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Jane R
Shipmate
# 331
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Posted
You know, I was wondering about introducing deliberate spelling mistakes too. Little J is also a very fluent writer, but nobody looking at her spelling would believe a grown-up had done it for her...
But Lyda Rose's suggestion is better. Why force him to fake a limp just to conform to the teacher's expectations?
Posts: 3958 | From: Jorvik | Registered: May 2001
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Lamb Chopped
Ship's kebab
# 5528
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Posted
Yep, Stanford Binet coming up. The one they' ve already given him tops out at 160 max, which may be problematic in our family. Re the deliberate mistakes--I actually refused to correct his spelling on the essay in question, and I know for a fact there were at least three errors. What this says about the teacher I don' t quite know... ![[Paranoid]](graemlins/paranoid.gif)
On a more poitive note, i met with his homeroom teacher yesterday and got permission to have him read in class wken bored, to stop the disruptive ticcing. And he doesn't mind if I teach my wee monster algebra et al. Even though it will only increase the boredom later. Resignedly he says, "we'll deal with it when we get there..."
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by Lamb Chopped:
Yep, Stanford Binet coming up. The one they' ve already given him tops out at 160 max, which may be problematic in our family.
As far as I know, none of the currently normed IQ tests are considered reliable past 3 standard deviations from the mean (which would be 145 or 148, depending on the test), and most are not generally considered reliable past 2 SDs from the mean, even if the hard ceiling is 160. To get the number of test subjects for the norming studies that would be required isn't considered financially feasible for the testing company.
There are a few testing centers who use an old versions of the SB, which could generate scores higher than 160. But that version is based on an entirely different theory of what intelligence is. It's not comparable with current IQ tests, and there are plenty of schools that reject it on that ground. (They may also reject it because it is a very old test, test security has not been maintained on it after newer versions came out, so families have been known to get the answers in advance of the testing, and coach the child to produce an artificially high score.)
You probably already know all that. But just in case ....
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Lamb Chopped
Ship's kebab
# 5528
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Posted
the flip side of this is that there are ceiling problems when you use a test that doesn't reach well past what the child can do. Probably screwed no matter what we do.
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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Josephine
Orthodox Belle
# 3899
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Posted
One thing a tester can do about that problem is to use an achievement test (not an IQ test) that is intended for an older child. That would be needed in addition to the IQ test, not instead of. But they can do the IQ test, realize that there are ceiling issues, and then give an achievement test normed for older kids, to explore what the child is currently capable of doing. A lot of people use the SAT that way - you can sign a younger child up for the SAT, and then find out how they compare with high school juniors and seniors. That can be really enlightening, and many schools take that very seriously.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Ruudy
Shipmate
# 3939
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Posted
Whew! We pulled off a successful birthday party for Tigger. What a huge sense of relief. I still remember the discussion of birthday parties from This is Not Holland. I didn't get it then. I do now.
So. we have been on a whirlwind of tests and assessments lately. School psychologist, pediatric neurologist, occupational therapist, speech and language therapist, and EEG. An MRI is scheduled for later this month. We are relieved that we are finally addressing his severe motor skill developmental delays but we're exhausted and are just now realizing that this is going to be a long haul journey.
Tigger's school psychologist diagnosed him with developmental coordination disorder (the DSM term for dyspraxia). Yes, some of you here on the ship nailed it. She said that we need to monitor him closely because if he does not show marked improvement in certain areas, it is likely that he will also be diagnosed with non-verbal learning disability in the next few years. She has been helpful in identifying his strengths as well - such as high intelligence and perseverance, and met with us and his K4 teacher to teach us interventions for both classroom and home. His teacher has been understanding and supportive. She is eager to learn from the psychologist how to accommodate him and how best to teach him. For instance, every visual lesson has to be mediated through verbal articulation. We are doing OT and speech therapy now on a weekly basis.
The cloud hanging over us right now is the need to follow up after the EEG. The psychologist's diagnosis was predicated on there not being an overriding medical diagnosis. The EEG revealed abnormal discharges on the right parietal lobe. The neurologist said this may or may not be related to his condition and they suggested either low dosage epilepsy medicine (after we get the results his MRI) or a 24-hour EEG to observe the extent of the abnormal brain activity.
I have a lot of Googling ahead of me, but if any of you with first hand experience of pediatric neurologists want to chime in, please do. Josephine, you mentioned that some neurologists focus almost exclusively on epilepsy. Epilepsy is certainly this doctor's primary focus but his practice appears also to address other issues - but we have no idea whether he does so very well.
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The shipmate formerly known as Goar.
Posts: 1360 | From: Gatorland | Registered: Jan 2003
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birdie
fowl
# 2173
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Posted
I'm having trouble putting together what I want to say here, and also not sure whether to put it here or the prayer thread, but here we go.
Seems to mr b and me that the major trigger for Groover's explosions is his growing awareness that other kids don't have to go through the stuff he does. Five times each day we carry out a medical procedure with him (I'm not going into detail here) which is unpleasant and invasive, but absolutely non-negotiable. His rages are most often provoked by us saying 'c'mon, it's time for X'.
He's very angry about the whole thing. He is very angry with God for making him this way (his words), and often says he wishes he wasn't alive.
I feel helpless in the face of it.
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"Gentlemen, I wash my hands of this weirdness."
Captain Jack Sparrow
Posts: 1290 | From: the edge | Registered: Jan 2002
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Jane R
Shipmate
# 331
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Posted
![[Votive]](graemlins/votive.gif) Ruudy
Birdie, that sounds horrible. We have a similar thing with Little J sometimes - she gets very frustrated with her migraines and says she wishes they would go away. She isn't quite at the stage of wishing she'd never been born though.
for you and Groover and Mr B.
We now have migraine headaches with added vomiting; just what you want on a Monday morning. Still, it could have been worse; it could have been on the carpet...
Posts: 3958 | From: Jorvik | Registered: May 2001
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maryjones
Shipmate
# 13523
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Posted
I don't know if my experience will help anybody. When I started teaching, I found I was suffering severe headaches with flashing lights and vomiting. Fearing vision problems, I went to the doctor. Classic migraine, he said and gave me some tablets. The tablets meant that I moved to vomiting stage that much faster so I gave them up.
Fast forward a few years and I woke up in sick bay. You fainted, my colleagues told me - but they told the doctor I'd had a fit. New tablets (anti-convulsant) and I've not had a migraine in the 40 years since.
My daughter is dyspraxic but can now cope with the food colouring that used to send her up the wall. If you haven't tried eliminating artificial colours from their diet, it's worth a go. Our daughter woke up without crying after a colour-free week - first time in 4 years!
Posts: 75 | From: Gloucestershire | Registered: Mar 2008
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by birdie:
He's very angry about the whole thing. He is very angry with God for making him this way (his words), and often says he wishes he wasn't alive.
I feel helpless in the face of it.
I'm so sorry, birdie. That's such an awful thing for you, and awful for him. I'm sure I've asked before, but I'll ask again -- have you read "The Explosive Child" by Ross Green? It's really for dealing with kids a bit older than Groover, but it might have some strategies that would help you deal with the rages. I think the hardest part, for you, has to be that the thing that is triggering the rages is truly aversive and absolutely non-negotiable. You can't offer him any respite. It has to feel awful for all of you.
Ruudy, congratulations on the birthday party! I hope y'all get some clarity for how best to treat your little one.
Jane R, I'm sorry about the new symptoms. I hate migraine.
Maryjane, thanks for sharing your experience. The American Academy of Neurology has recently released new evidence-based guidelines for treatment of migraine. Two anti-convulsants are listed among the most effective migraine prophylactics.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Chorister
Completely Frocked
# 473
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Posted
Blessings wished for Groover
Are there any self-help groups (IRL or in a safe place online) where he can meet others with the same condition, so they can meet/play/share with each other? Then he will know he's not completely alone.
And is there something wonderful he can look forward to/be given at the end of each procedure to make it (in as far as it can be) seem worthwhile?
[ 04. December 2012, 15:43: Message edited by: Chorister ]
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Retired, sitting back and watching others for a change.
Posts: 34626 | From: Cream Tealand | Registered: Jun 2001
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birdie
fowl
# 2173
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Posted
Thanks, everyone.
We have read The Explosive Child, and I found it very helpful in terms of feeling less hopeless, and I've taken some things from it, but I think we talked earlier about how Groover's slight word-finding difficulties (which lots of people don't believe in, because of his enormous vocabulary) make it hard to do the chatting about what's happening.
It was also very helpful in making me feel vindicated in our experience that things such as sticker charts and rewards just don't work for him. People who've had good results from reward charts seem to propose bthem as the answer to everything and don't really believe there are children out there who aren't motivated by them.
Anyway, had a meeting with the school nurse this morning and I think we have a - tentative - way forward.
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"Gentlemen, I wash my hands of this weirdness."
Captain Jack Sparrow
Posts: 1290 | From: the edge | Registered: Jan 2002
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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by birdie:
I think we talked earlier about how Groover's slight word-finding difficulties (which lots of people don't believe in, because of his enormous vocabulary) make it hard to do the chatting about what's happening.
I definitely understand that! Not-So-Little-Anymore has sigificant word-finding difficulties and a huge vocabulary, and it was very, very hard to get anyone to believe it. He got a great deal of help from working with a hospital-based Speech and Language Pathologist who specialized in the language part of the work. When he's got a migraine, his nouns still disappear, and if his anxiety ramps up for whatever reason, his word-finding in general becomes more difficult. But for daily life, the work with the SLP made an enormous difference.
quote:
It was also very helpful in making me feel vindicated in our experience that things such as sticker charts and rewards just don't work for him. People who've had good results from reward charts seem to propose bthem as the answer to everything and don't really believe there are children out there who aren't motivated by them.
BTDT too. The best way to explain it to doubters was explained to me by Not-So-Little's psychologist. She talked about Pavlov's dogs. Present food, ring bell, dogs salivate. Eventually ringing the bell makes them salivate, even if there's no food. They are not choosing to salivate, and they can't choose not to. Punishing them for salivating will only make them neurotic -- they will have absolutely no idea what they are being punished for, and won't be able to avoid doing it anyway. Rewarding them for not salivating won't work, either -- they won't associate the reward with the lack of salivation, and they can't control the salivation anyway. For classically conditioned behaviors, you have to avoid reward and punishment entirely, and use a completely different approach to modifying the problem behaviors.
And it helps, sometimes, to remember that, just as Pavlov helped create the salivation response, we sometimes help create the problem behaviors in our kids, too. That should help us be more patient and generous when we're trying to modify those behaviors.
[coding]
[ 11. December 2012, 01:20: Message edited by: Welease Woderwick ]
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
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Jane R
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Weird in a good way, Josephine? If he's got used to having migraines all the time, maybe it feels weird when they stop?
Little J's glasses haven't arrived yet... they probably won't arrive before Christmas but I am keeping my fingers crossed.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Niminypiminy
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My copy of The Explosive Child just arrived.I sat down and read the first chapter - with tears running down my face. I haven't ever read anything that described so accurately the state of war we live in with Nimlet 1. Even if nothing else in the book is helpful, for that alone, to make me know that the situation we are in is recognisable to other people, makes it worth buying.
Thani you, Josephine, for recommending it. ![[Axe murder]](graemlins/lovedrops.gif)
[ 17. December 2012, 10:39: Message edited by: Niminypiminy ]
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Lives of the Saints: songs by The Unequal Struggle
http://www.theunequalstruggle.com/
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Josephine
Orthodox Belle
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quote:
Originally posted by Jane R:
Weird in a good way, Josephine? If he's got used to having migraines all the time, maybe it feels weird when they stop?
We're not requiring him to wear them -- he's 17, and we figure he knows what helps and what doesn't. He's had them since Friday afternoon, and he's wearing them.
And we're now at three days in a row with no migraine. I hardly dare to breathe.
Niminypiminy, I am so glad you've found the book helpful. It changed our parenting, and it changed our lives.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
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Jane R
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Fingers crossed for Not-So-Little One, then...
Little J nearly had a migraine yesterday during the first performance of her school play; she said she found the flashes from people's cameras were making her uncomfortable. It definitely looks as if light is the trigger for her.
Posts: 3958 | From: Jorvik | Registered: May 2001
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Lamb Chopped
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Okay, now what? Pediatric neurologist with thirty years experience says "no medical diagnosis"; English teacher and counselor both say "definitely autistic"; examiners say "very bright, affectionate, reads social cues well, great eye contact and gestures, creative, maybe or maybe not one sensory issue, no fixations or narrow interests, but has attention problems and sometimes gets in people's faces without noticing, a tad perfectionist, refuses to tell social lies--let's call it educational autism. Please sign here"--based largely on the rating of one teacher, the English teacher. Who, by the way, is threatening to refuse him gifted services if I don't agree to the autism dx. What the hell do I do now? Transfer to public school would still have him dxed autism, as the examiners are from there. I would be happy for him to get a little extra help, but I'm worried about the effects of sticking him with this label. Particularly when the neurologist disagrees.
I'm also left wondering just where the limits beween ASD and normal lie, since most of his quirks are echoed in his parents. Are we autistic, then? And how would that sort with careers spent entirely in people care, often of the most intimate and connected/relationship kind?
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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Doublethink.
Ship's Foolwise Unperson
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Well, autism is believed to have a genetic basis and you are more likely to have it if a first degree relative is a scientist or engineer. So yes, *if* your child has an autistic spectrum condition there is a good chance one or other parent will have some ASD like traits.
I am confused as to why a paediatric neurologist would be an appropriate professional to diagnose (or not) an autistic spectrum disorder ? I would expect that would be more usually done by either a child clinical psychologist or a child psychiatrist.
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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell
Posts: 19219 | From: Erehwon | Registered: Aug 2005
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Doublethink.
Ship's Foolwise Unperson
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Just re-read what you said about the neurologist said more closely. Did the neurologist say that he doesn't have enough evidence to make a formal diagnosis of autism. Or there is insufficient evidence for a medical diagnosis of an abnormality of the nervous system (such as may be queried in the case of ticcing e.g. tourette's) ? Or was the communication not clear about what was being referred to ?
Re the examiners (which profession were they ?): to diagnose ASD, requires a detailed developmental history, so it is a bit dubious if it is done just on the basis of some psychometric tests. And I am sure you can't do it on the basis of the Stamford-Binet alone, that is just an intelligence test you can't assess for a specific developmental disorder with it.
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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell
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Lamb Chopped
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Here AFAIK either can do it, but the neurologist is preferable (said the various special ed people) maybe because it has a clearer than usual link to the brain etc? I don't know. Maybe it's also that he/she is better equipped to rule out other clearly physical based developmental disorders, which a psychologist might not recognize? But I'm guessing.
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
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Lamb Chopped
Ship's kebab
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Neurologist said " there's no medical diagnosis here" though he did give me the name of a tic clinic (had to take my word for it as LL for some reason refrained from ticcing during the whole visit. He put it down as "school problem" in the dx space.
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
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Jane R
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Lamb Chopped: quote:
very bright, affectionate, reads social cues well, great eye contact and gestures, creative, maybe or maybe not one sensory issue, no fixations or narrow interests, but has attention problems and sometimes gets in people's faces without noticing, a tad perfectionist, refuses to tell social lies
This sounds like me (and Little J) but not like any definition of autism I've ever read. I thought the main characteristics of that were difficulty in reading social cues and a tendency to have fixations/narrow interests?
Is agreeing to the label 'educational autism' likely to cause him problems later on?
Posts: 3958 | From: Jorvik | Registered: May 2001
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Jane R
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And call me a cynic, but this bit: quote:
based largely on the rating of one teacher, the English teacher. Who, by the way, is threatening to refuse him gifted services if I don't agree to the autism dx.
sounds like he's having problems with this one teacher... could a clash of personalities be involved here?
And is it actually legal for her to refuse him gifted services that he's qualified for, just because you refuse to let her slap a label on him?
[ 18. December 2012, 18:12: Message edited by: Jane R ]
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Autenrieth Road
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quote:
Originally posted by Lamb Chopped:
I'm also left wondering just where the limits beween ASD and normal lie, since most of his quirks are echoed in his parents. Are we autistic, then? And how would that sort with careers spent entirely in people care, often of the most intimate and connected/relationship kind?
I have an American friend who was just diagnosed with autism in the Netherlands, where she lives. She is 52. She is a brilliant, social, observant, talented, person, and none of us who know her would ever in a million years have guessed autism, nor would she have suspected it herself. But what she was told was that autism (in this case at least) is about a difference in processing. Non-autistic people see a whole, and then fill in the parts. Autistic people (or at least her form) see all the detail first, and then have to synthesize the whole from it.
Example: we were at the supermarket together, looking for yogurt. She was visiting me, so I knew where the yogurt case was, and walked us over. I picked out a yogurt, she picked out a yogurt, I looked at her yogurt and said "Oh, they have that kind, I want that instead!" and put mine back, hunted around the shelves until I found one like hers, and took it. What had just happened?
I had seen the general whole "yogurt case", remembered what I usually get there, looked closely just enough to find it, and taken it off the shelf.
She had seen many many different kinds of yogurts, and had to synthesize from all this detail she was seeing "ah, we're at the yogurt case" and from that deduced that the appropriate response was to choose a yogurt. But she had already seen all the detail, so from that wealth of detail she could choose precisely the kind of yogurt she wanted.
I on the other hand hadn't really seen any of that detail at all, so hadn't had the alternative of the different kind of yogurt in my mind until I saw her choice, and once I did see her choice, I still didn't know where to find it without further searching.
Another example happened a few days later. I wasn't with her then, but I think I can fill in what the experience for her might have been like. I was at the airport looking for the gate for a connecting flight. I saw a board "Arrivals." That triggered me to look a bit farther and saw "Departures." So I knew I was in the right general area. But then, confusingly, I couldn't find my flight until I made myself really slow down, stop scanning the board as a whole, and start reading each line, line by line, carefully. After about three lines I figured out how the information was organized, and then could jump to my line and find my flight.
I think for my friend it would have worked the other way: she would have seen a lot of lines of data. Then she would have had to notice the column headings, to work out that it was City, Gate, Status, Time. Along the way she might have noticed that they were alphabetical, except very oddly they were in two alphabetical sets. What's the difference between this set and that set? Then she would have figured out that one set was Arrivals and one set was Departures. Then, having figured all of that out, and knowing which set was now the Departures, she would have immediately known where to find the line for the departure to her city. And do all that while having the detailed information of 200 Arrivals and Departures swirling about in her head.
This has practically expressed itself in her life over and over and over where she learns subjects very very well, or else she does terribly in them. The reason is because until she has completely mastered the subject, everything is still details. She needs all the details before she can form the overarching picture. So if she gets tested or asked to work with the subject before she knows all the details, she can't do it. But once she gets to the point of being able to form the overarching picture, then all of a sudden she is a complete master of the subject, because her overarching picture is already filled in completely with all the essential details.
From my yogurt example, you can also see that in any new situation she needs time to orient herself to the surroundings in a particular kind of way. Me, from the other end of the store, I see the giant sign that says "yogurt" and know where to go. Her, she needs to look everywhere and get up close and detailed, and then not only that, process from "what am I looking at here? Ah, lots of kinds of yogurt" to "this is a yogurt case" to "I can get a yogurt here."
Another example of this effect is that she was taking a Dutch proficiency exam. She knows and speaks Dutch very well, but she found the exam incredibly hard, because it was a timed exam which basically consisted of a lot of questions, with every question presenting a new situation with lots of detail, asking for a detailed reply. So on every new question, she's having to shift gears from the previous situation, figure out the details of the new situation, think through all the ramifications of the new situation, think about all the places where the new situation is ambiguous, absorb all the details of what she's being asked to produce, think about all the details of where what she's being asked to produce is either ambiguous or could take an entire thesis to answer or both, and then give an answer which to her has lots of detail and implications, and try to give that answer in the very short amount of time left out of the average amount of time allowed per question if you're going to finish the whole exam.
Her autism was found as a result of testing that she was undergoing for some other reason (vocational affinity, perhaps?), and they found a faint hint of something in the results that they wanted to follow up on. My friend pointed out that the reason it showed up so faintly in the initial results is that the questions would ask things about how you process things, that can only be answered if you know how other people process things and that your way is different. For example, (I don't know if this is an exact question from the evaluation, but it's similar in nature, I think) "do you find yourself overwhelmed with details?" Well, if all your life you've processed data in this way, and found a way to manage, and have no idea other people process differently, you won't think of your thinking as being "overwhelmed with details." You may not even think of it as detail-oriented at all, since you can hardly even talk about it until you've processed all the details and emerged with a synthesis. You may be more likely to think that you're slow at learning, and have worked hard to be good at some subjects, and will answer the question "No."
I don't know if there is some distinctive Dutch use of the word autism which doesn't identically track to how we use the word here in the States, and/or if this kind of processing difference in fact is at the root of the kinds of traits that I (naively) am used to thinking of as characteristic of autism spectrum disorders. I wanted to offer this story in case it is useful to anyone here.
I will try to stay reading this thread for a while in case anyone has any questions, but I don't always read this thread, so if you have any questions and I seem unresponsive I probably just haven't seen them: please feel free to PM me.
Oh, the yogurt? Stonyfield Farm Whole Milk Vanilla.
[ 18. December 2012, 19:34: Message edited by: Autenrieth Road ]
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Truth
Posts: 9559 | From: starlight | Registered: Oct 2005
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Josephine
Orthodox Belle
# 3899
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quote:
Originally posted by Jane R:
And call me a cynic, but this bit: quote:
based largely on the rating of one teacher, the English teacher. Who, by the way, is threatening to refuse him gifted services if I don't agree to the autism dx.
sounds like he's having problems with this one teacher... could a clash of personalities be involved here?
That's what it sounds like to me. If he had a developmental disorder of any kind, it would exist in every setting. It might be worse in one setting than in another, but if the only place it shows up is English class, it's not a developmental disorder. It could be a severe case of dysteachia, which is a persistent condition that usually responds to placing the student in a different class.
That said, I know a number of parents who have kids with an educational autism label, and I haven't ever heard of a downside to having the label. It is not a medical diagosis, it's a special education category. Some districts require a medical diagnosis before they'll assign a special ed category, but some don't. If you object to the category, that's a point that can be negotiated -- you might prefer Other Health Impaired. The category really doesn't matter; the thing is, the child has to be assigned one of the 13 special education categories before the child can be provided special education and related services. No category, no services.
The assigned category exists only in the child's special education records, which are not shared even with teachers. The only things teachers get are the goals, objectives, and accommodations outlined in the IEP. But there's no medical or diagnostic info there, no category information. Just "Student must have a seat near the door" or "Student requires large-print books."
As far as the legality of making gifted services contingent on special ed services, that depends entirely on which state you're in. There is no federal law regarding gifted services; some states mandate gifted identification and services, some mandate gifted identification but do not mandate services, and some have no gifted mandate at all. If your state does not mandate gifted services, there's almost nothing you can do if the school chooses not to provide your child with gifted services.
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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!
Posts: 10273 | From: Pacific Northwest, USA | Registered: Jan 2003
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Lamb Chopped
Ship's kebab
# 5528
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I was told at the meeting that they would provide all teachers with his diagnosis. Are private schools different then? By the by, they had the English teacher present without notifying me to hear all the gory intimate details.
In fairness i must say that his homeroom teacher is also concerned, though to a lesser degree and almost wholly due to the tics (which need not be ASD of course).
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Er, this is what I've been up to (book).
Oh, that you would rend the heavens and come down!
Posts: 20059 | From: off in left field somewhere | Registered: Feb 2004
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Chorister
Completely Frocked
# 473
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No idea what it's like in America, but in Britain Private Schools operate on a 'you get what you pay for' basis. Thus it can be extremely expensive for parents to educate their Special Needs children in a Private School - not only do you have to pay the same rate as all the other parents, but for every special provision on top of that - tailored to your child and their particular needs - you have to pay again.... and again.....
It's very important that people realise that before considering educating children with Special Needs privately - best to talk with the school in depth in the initial stages before committing yourself to a place.
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Retired, sitting back and watching others for a change.
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