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Source: (consider it)
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Thread: Children with special needs
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Curiosity killed ...
Ship's Mug
# 11770
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Posted
Because that's how the child, now adult, I knew with nystagmus was picked up - not being able to judge depth for stairs and construction toys being something they weren't interested in. They were registered blind.
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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 ...:
Because that's how the child, now adult, I knew with nystagmus was picked up - not being able to judge depth for stairs and construction toys being something they weren't interested in. They were registered blind.
Littlest One's neurologist told us that a child not being interested in building toys is a Big Red Flag. The problem may be visual impairments or motor impairments (or, in the case of Littlest One, both). But it's definitely something that should be noted and followed up on.
Another red flag that we missed was that Littlest One absolutely loved swinging on the playground when he was still little enough that someone always pushed him. When he got old enough that he was expected to make himself swing, he lost interest. Except that, really, he didn't. He just didn't know how to swing. When he started seeing an occupational therapist, we learned that he couldn't swing, and started teaching him. It took a long while, a lot of direct instruction and practice. But he mastered it.
Basically, I think any time a child doesn't engage in or enjoy typical play activities, it's a good idea to figure out why not. Of course a child may just like one thing better than antoher. But if a child won't play patty-cake at an age when kids all play patty-cake, it might be that they have a problem crossing the midline, or they might they lack depth perception. If they can't stand to play "I spy" and say it's a stupid game, maybe their color perception is off. That sort of thing.
When a child has complex developmental quirks, figuring it all out can be like peeling an onion. You work through one layer, and discover there's another layer there waiting. And it can be really frustrating for parents and child alike. If the vision specialist, for example, suggests overlays on books, which will help with reading, but the child doesn't have the motor skills to manage the overlays, sometimes the vision specialist (or the parents) will decide that the child is being oppositional or uncooperative or attention-seeking. We finally figured out that we should assume that the child is doing the best he can until it's conclusively proven otherwise.
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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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Sir Kevin
Ship's Gaffer
# 3492
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Posted
On The Archers, the Tuckers are waiting for a baby with Down's Syndrome to be born. It will be interesting to see how this story develops. We used to be members of a service club and spent some time with special needs kids at the local community center. Downs kids seem to be always happy and appear to age slowly.
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If you board the wrong train, it is no use running along the corridor in the other direction Dietrich Bonhoeffer
Writing is currently my hobby, not yet my profession.
Posts: 30517 | From: White Hart Lane | Registered: Oct 2002
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Ruudy
Shipmate
# 3939
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Posted
I have an uncle with Down's who has been a hugely positive influence on my extended family. I am grateful that my grandparents did not follow the advice of medical professionals in 1953 who suggested that they not hold him and send him to an institution.
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The shipmate formerly known as Goar.
Posts: 1360 | From: Gatorland | Registered: Jan 2003
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Bronwyn
Shipmate
# 52
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Posted
This time last year my daughter was diagnosed with fragile x syndrome which has been a real hurdle for us and the extended family.
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Fragile X syndrome is part of our lives. Someone I love makes me proud who has this syndrome. I love you Miriam.
Posts: 1221 | From: Melbourne (Australia) | Registered: May 2001
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Niminypiminy
Shipmate
# 15489
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Posted
Josephine, that's an incredibly perceptive post about toys and typical activities. When nimlet1 was little I bought him all sorts of small world and imaginative play toys ( tea sets and the like)' which he wouldn't play with. And I used to see other toddlers brm-brming their toy cars around and wonder tearfully where I had gone wrong.
If I had only known at the time that these were red flags the history of the next few years might have been very different.
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Lives of the Saints: songs by The Unequal Struggle
http://www.theunequalstruggle.com/
Posts: 776 | From: Edge of the Fens | Registered: Feb 2010
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Ruudy
Shipmate
# 3939
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Posted
![[Votive]](graemlins/votive.gif) for Bronwyn's daughter, Bronwyn and the whole family
quote:
Originally posted by Josephine:
Littlest One's neurologist told us that a child not being interested in building toys is a Big Red Flag.
Yes thanks Josephine for sharing your experience in this.
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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
Thanks also for the recommendations of The Explosive Child. It's made me feel slightly better in that I don't feel so much that Groover's behaviour is as off the scale as I'd worried.
However his explosive behaviour at the moment is causing us real problems. As I type, he is at the end (I hope) of an hour-long explosion over going to bed. I am determined to try the solutions from the book but I feel so beaten down by it all at the moment I can't see anything working. His response to any attempt to talk about the situations that prompt explosions is pretty much to explode again. Or, when asked the 'what's up?' question, to respond with 'I'm not telling you!' or 'it's none of your business!' which leaves me feeling pretty helpless.
He only explodes at home, and only when both parents are present, which adds up to us feeling it's probably somehow us that's the problem.
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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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Curiosity killed ...
Ship's Mug
# 11770
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Posted
No, it's far more likely that it's something else that's the problem and he feels safe to explode that emotion at home. He's had a lot of changes to deal with recently with your move and his school move. And he's no longer with that peer group that grew up with him and know him as him, but see him as this interloper who's different - before he has any differences to deal with.
When mine wasn't coping at about the same age I worked out she needed a lot of quiet time at home to give her space to just be and not have to deal with people she wasn't sure of or necessarily comfortable with all the time. And that made home (whichever home it was at the time - we moved a lot when she was younger) a safe place to be.
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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 birdie:
His response to any attempt to talk about the situations that prompt explosions is pretty much to explode again. Or, when asked the 'what's up?' question, to respond with 'I'm not telling you!' or 'it's none of your business!' which leaves me feeling pretty helpless.
Has he ever had an evaluation for language processing skills by a speech and language pathologist? Littlest One* used to do the same thing. It turned out that he had dysphasia -- almost like the word-finding difficulties someone might have after they've had stroke. Most people didn't notice it, because he was very bright, and had an enormous vocabulary, so, when he was feeling good, he could usually substitute a word, or talk around it, or find some other way to communicate his ideas.
When he was anxious or upset, though, all his "workarounds" for his dysphasia would go away. Things that are hard get harder when you're stressed. So talking with him about things that were hard for him often didn't go well. And answering questions was something that he found particularly difficult. Things he could tell you if you just let him talk, he couldn't say if you asked him.
That made collaborative problem-solving really difficult. We'd used it successfully with his older brother, so we understood how it was supposed to work. With him, we had to modify the approach. We would have to put the words in his mouth. Instead of asking him, "what's up?" we'd have to suggest our best guess of what might be up, and ask him if we got it right. Often, we had to do problem-solving in small sessions. One or two guesses, then stop until the next day. Otherwise, he'd get too worked up.
He worked with a SLP for about three years, and that made a tremendous difference. He still becomes dysphasic from time to time, but it's not as bad as it used to be. And we can do problem-solving with him, and ask him what he thinks, and it works. Most of the time.
* I really need to come up with something else to call him. He's not so little any more!
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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
quote:
Originally posted by Curiosity killed ...:
No, it's far more likely that it's something else that's the problem and he feels safe to explode that emotion at home.
I know that really - I was just feeling a bit overwhelmed when I wrote that! I'm also grateful that he's not exploding anywhere else - if he was like it in school it would hamper the process of making new friends and settling in.
Josephine, you've given me a lot to ponder. Groover is very articulate and has a massive vocabulary, but I have noticed word-finding difficulties occasionally so you might be on to something. Thanks.
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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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Lyda*Rose
Ship's broken porthole
# 4544
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Posted
Birdie: quote:
However his explosive behaviour at the moment is causing us real problems. As I type, he is at the end (I hope) of an hour-long explosion over going to bed.
My guess is that it is a mix of feeling safe at home to express his stress and a successful strategy for feeling a bit more in control of his world, although he looks totally out of control to us. After all he did get out of going to bed for an hour; at some level that's probably satisfying. ![[Biased]](wink.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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Josephine
Orthodox Belle
# 3899
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Posted
quote:
Originally posted by birdie:
Josephine, you've given me a lot to ponder. Groover is very articulate and has a massive vocabulary, but I have noticed word-finding difficulties occasionally so you might be on to something. Thanks.
If you decide you need to have his language skills evaluated, you might want to make sure the SLP who sees him has lots of experience evaluating children with significant neurological impairments. Two different school-based SLPs told us that Littlest One had no difficulties, except that he was uncooperative or oppositional for parts of the evaluations. (The parts he couldn't do. Imagine that.) I think they were just snowed by his vocabulary and by his general level of knowledge. And, of course, most of their work is with kids who have problems with articulation. They really didn't have the experience to recognize what was going on with Littlest One.
On the other hand, the hospital-based SLP who works exclusively with kids with neurological impairments (brain injury, strokes, cerebral palsy, etc.) saw the word-finding problems immediately. She was fabulous.
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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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Smudgie
Ship's Barnacle
# 2716
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Posted
I've just come in from a drop-in workshop provided by the National Autistic Society with an excellent speaker. Special Help 4 Special Needs is his website - isn't it lovely when you find a speaker who will actually answer specific questions with actual suggestions! I learned a lot.
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Miss you, Erin.
Posts: 14382 | From: Under the duvet | Registered: Apr 2002
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Lamb Chopped
Ship's kebab
# 5528
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Posted
Getting very frustrated with a teacher of LL who thinks he is autistic and is pushing us to get him diagnosed and send her paperwork to officialize it. I don't think she knows autism from a hole in the ground and LL fails the major criteria. But until I produce an official medical opinion she's got me pegged as an obstructive parent in denial--and this at our first meeting.
She has i think been putting her head together with the school counselor who is still wet behind the ears new graduate and said "educational autism" to me last year--i think because he has difficulty with reading some social cues. But he has none of the rest of it--no rigidity of outlook, an extremely wide range of interests, a great pleasure in pretend play and in social interaction, and a strong desire for cuddles.
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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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Qestia
Marshwiggle
# 717
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Posted
Lambchopped I think your instincts are correct. Is a diagnosis of some sort necessary to get LL help with any issues he has? My son has been getting services through the public schools for years with no official diagnosis (though he has one now, ADHD, I still have not shared that with the school). Still, one of his weaknesses is also social cues/pragmatic speech and so twice a week he works with the school speech therapist on those skills.
I did wonder at times if my son was on the spectrum due to his sometimes endless monologues on topic du jour, lack of eye contact, the social cues thing--but during his evaluation this summer the doctors confirmed that his imagination, ability to interact with peers and adults, and flexibility ruled that out pretty decisively.
[ 28. September 2012, 16:30: Message edited by: Qestia ]
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I’m on Aslan’s side even if there isn’t an Aslan to lead it.
I’m going to live as like a Narnian as I can even if there isn’t any Narnia.
Posts: 1213 | From: Boston | Registered: Jul 2001
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CuppaT
Shipmate
# 10523
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Posted
I'll certainly look up the book The Explosive Child, too. Thanks. My youngest son, 8, has Tourette Syndrome. His tics vary, and come and go, but the rages can be awful sometimes, and violent at their worst, only once. We also have gotten used to counselors and psychiatrists and nutritionists. Most days are ok, but some are downright difficult for the whole family. It was worse before we figured it out (when he was about 5) and got help and started understanding him and his need to tic. But balancing his needs and the rest of our needs for sanity and cleanliness (the spitting tic) is sometimes difficult.
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Stand at the brink of the abyss of despair, and when you see that you cannot bear it any longer, draw back a little and have a cup of tea.
~Elder Sophrony
Posts: 919 | From: the edge of the Ozarks | Registered: Oct 2005
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comet
Snowball in Hell
# 10353
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Posted
quote:
Originally posted by Lamb Chopped:
Getting very frustrated with a teacher of LL who thinks he is autistic and is pushing us to get him diagnosed and send her paperwork to officialize it. I don't think she knows autism from a hole in the ground and LL fails the major criteria. But until I produce an official medical opinion she's got me pegged as an obstructive parent in denial--and this at our first meeting.
She has i think been putting her head together with the school counselor who is still wet behind the ears new graduate and said "educational autism" to me last year--i think because he has difficulty with reading some social cues. But he has none of the rest of it--no rigidity of outlook, an extremely wide range of interests, a great pleasure in pretend play and in social interaction, and a strong desire for cuddles.
whoa whoa whoa! I went through this when Chasee#2 was in elementary school. turns out, it's illegal in this state for a teacher/admin/counsellor etc to "armchair diagnose" and pressure you into treatment. look into it in your area.
Please remember that YOU are the parent. YOU are the authority. if you have done enough homework and are comfortable that your child does not need medical intervention, so be it. Sometimes, the good parents are the obstructionist ones. Tell her, FIRMLY, that you have done your research and are comfortable that your child does not need the medical intervention. then shut down the rest of the conversation. you are the final word.
the reality is, every kid has their quirks. every kid is going to develop in different ways and at different rates. some have issues that need medical intervention. some, like mine, are just eccentric and have no need of drugs or other treatment. Teachers need to do their very best within their ability to meet each kid where he or she is at that time. If they try to treat each kid as if that kid needs to fit some clonish standard, they are doing all the kids a disservice. plus, they should know better.
and, remember to have some faith in yourself. situations like this can leave you, as the parent, feeling very insecure in your abilities and wondering if you're doing right by your kid.
Do right by your kid. then turn off the judgements and have faith in yourself.
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Evil Dragon Lady, Breaker of Men's Constitutions
"It's hard to be religious when certain people are never incinerated by bolts of lightning.” -Calvin
Posts: 17024 | From: halfway between Seduction and Peril | Registered: Sep 2005
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Evangeline
Shipmate
# 7002
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Posted
quote:
Is a diagnosis of some sort necessary to get LL help with any issues he has? My son has been getting services through the public schools for years with no official diagnosis (though he has one now, ADHD, I still have not shared that with the school).
In some areas, like mine, for example, you do need a diagnosis of disability to qualify for any special services eg learning support officer, speech or behaviour therapy in schools. In addition, for some problems, early, specific intervention is extremely beneficial so I don't think that pressure for a diagnosis, is in all situations, unreasonable.
THis is not the case for ALL situations but there are cases where an official diagnosis which of course includes a diagnosis that your child is well within "normal limits" of IQ, behaviour etc etc is beneficial and to be preferred to teachers labelling your child or even having interventions that may not be suitable for your child's condition or lack thereof, based on the teacher's idea of what is right or sadly, sometimes what makes the teacher's life easier. THe key is getting a suitably qualified expert to do the assessment.
Posts: 2871 | From: "A capsule of modernity afloat in a wild sea" | Registered: May 2004
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Curiosity killed ...
Ship's Mug
# 11770
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Posted
Lamb Chopped, how does diagnosis work with you?
Here we get referrals to a paediatrician and/or educational psychologist, who test variously depending on age and draw conclusions. They may make recommendations.
As a school professional, I had parents coming to me asking if I agreed with their concerns, or me going to parents saying I was a bit worried about their child. Mostly the parents were incredibly relieved someone else was worried and trying to get something done or pushing the school to get something done when we didn't think the problems were that big in the scheme of things. But we wouldn't have gone to the parents unless we were really concerned about the student - usually on behaviour grounds. I tended to pick up on low achieving students too, in the hope that the difficulties being flagged up might suggest other ways of helping. But we had one family where we could see the concerning behaviour patterns and learning difficulties in the boys getting worse as you went down the family. The youngest was performing at a very low level, the lowest in the school year group, and wouldn't communicate with teachers or students - he communicated through another student, which didn't do that student much good either. The parents refused any help or assessment and we had to get parental permission to intervene.
You can pay for private educational psychologist reports. Schools here tend to regard them with suspicion as paying for what you want to get. Specific reports from dyslexia specialists tend to be regarded with even more suspicion (I regard them with suspicion, because they come with an agenda).
An Ed Psych report is a good start for getting exam concessions for example - extra time, a reader, a scribe. They have to be redone regularly to still be current. The one from school ran out while my daughter was at university and she had to be assessed by the university Ed Psych. Would it be worth getting something like that done to show the teacher?
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Mugs - Keep the Ship afloat
Posts: 13794 | From: outiside the outer ring road | Registered: Aug 2006
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Daffodil
Apprentice
# 13164
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Posted
As an occasional lurker on the ship I popped in searching for theological debate, and spotted this thread.
"Hello! " to anyone who knows me from other Christian websites or 365, and "hello" to anyone who doesn't know me!
I have a teenager with autism and will try and remember to return to read updates on this thread.
I think I remember asking about the 'Holland' thread when I first registered here several years ago, and was told that you had to have over a certain number of posts to join in. I don't know if that still applies. If so, and that was a route chosen, then it would exclude people like me and other 'quiet' browsers from participation.
Posts: 19 | Registered: Nov 2007
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Uncle Pete
Loyaute me lie
# 10422
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Posted
Private boards have a minimum number of posts required, However, it is irrelevant in this case since It's not Holland died in 2008.
I am pleased that so many people are now discussing special needs on the public boards. That is a great shift since I came aboard.
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Even more so than I was before
Posts: 20466 | From: No longer where I was | Registered: Sep 2005
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Lamb Chopped
Ship's kebab
# 5528
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Posted
Thank you, everybody, for such great and thoughtful posts. My son has no academic issues to speak of, it's all social--and his issues there are mainly of the "you're a nerd, therefore we don't like you" type. Which certain adults at his school seem to think should be handled by changing LL. Which pisses me off.
I would very much like to get him into something where he could learn in very practical ways how to handle things like a) joining in a game that is already in progress on the playground, b) dealing with bullying and teasing, c) coping with the fact that his classmates would rather play videogames than invent stuff, and probably come from bookless homes. (Yes, I'm snide and bitter too, but this is really getting my goat.) I'm not really sure where I can find something like this, though--or if it even exists.
I was very like LL when I was small, but learned to conform under the pressure of a) an alcoholic and scary parent, and b) getting beat up by schoolmates. LL is mocked but not under that same degree of pressure, and I wouldn't wish it on him--but maybe that's what it takes to force one of our kind to learn protective camouflage?
So I'm not really sure what services beyond the abovementioned LL would need, or could use. Maybe a little OT for mild dyspraxia, but I can do a lot of that at home. His grades run in the A to A+ range in all subjects, so not tutoring. I'm fairly sure his IQ is in the genius range, as for both parents (not that I'm telling him that). He does have a mild stutter at times, that would be good to work on...
His English teacher stopped me today to hassle me about his paperwork again. She really really REALLY wants him slotted into the public school special ed system. I'm feeling highly antagonistic toward her and am tempted to clout her upside the head with my PhD. See how petty I am?
So as far as a diagnosis goes, I'm really more interested in getting various crap ruled out (in order to shut up the school) than in getting him diagnosed as anything in particular. My family self-diagnosis has always been "we're just weird," which we are mostly pretty content with, and keeps us from either getting too full of ourselves, or conversely thinking that we are damaged freaks.
Comet, you are absolutely right, she should not be playing the freaking armchair diagnostician on us. But she IS, and my child IS on scholarship, and making an overt enemy of the principal's wife would make our lives even more difficult (unless we moved him to a different school, which would cost him friends he dearly loves as well as presenting us with a whole new set of adjustment issues). So I'm trying to navigate between the rock and the hard place here.
Forgive me for being so longwinded. Bottom line is, my gut instinct is that LL is a normal child of an uncommon type. He is bookish, creative, too bright for his own good, somewhat clumsy, friendly, over-anxious to please, and endearing. He is, in short, a swan tripping over his own wings. And he's getting nibbled to death by ducks.
I wanna make duck pie. But I think I'm going to have to get an official (non)diagnosis to do it.
Grrrrrrrrrr.
[ 02. October 2012, 00:43: 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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comet
Snowball in Hell
# 10353
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Posted
your kid sounds just like my youngest. all three of my kids are eccentric in similar ways; the difference with Chasee#3 is that he isn't into the social game. the other two are gregarious as hell. He'd rather read a book. luckily his test scores are so off the charts that the teachers aren't trying to pigeonhole him; they're too busy trying to meet his academic needs. (the joys of a small village school - lots of individual attention, though it's still been difficult) and, now that he's a bit older he handles the social aspect better, though he still doesn't like it.
I'm not sure what guidance to give you beyond what I already said - stick to your guns and remember who's the final authority in his education and upbringing.
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Evil Dragon Lady, Breaker of Men's Constitutions
"It's hard to be religious when certain people are never incinerated by bolts of lightning.” -Calvin
Posts: 17024 | From: halfway between Seduction and Peril | Registered: Sep 2005
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Curiosity killed ...
Ship's Mug
# 11770
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Posted
Sounds like mine too. Lamb Chopped. When I worried about mine socially (and the effects of the dyslexia) we did see the paediatrician and were referred to the local CAMHS (Child and Mental Health Services) that assessed her. Yep, definitely genius level - MENSA if she could be bothered. No, can't suggest anything other than relaxation therapy - which she loathed, she said it made her switch off the hyper-alertness she was using to cope. The other "helpful" comment from CAMHS was that life wasn't going to be much fun at ordinary school level, it would get better at university level when she'd find more peers (geeks?) to relate to. Thanks a bunch, guys.
A friend said helpfully at the time that he hadn't socialised with his peer group when he was younger. He'd been into cricket and had been socialising with adults from very young. So we went looking for things we both enjoyed doing (she was too young to do it on her own) - archaeology, conservation. She took part in a dig at 16, ended up helping the volunteer surveyor map the site and showed the adults how to when he wasn't around.
She also reckoned school was to achieve the qualifications she needed to go on and gritted her teeth through most of it.
We have primary school materials to teach these sorts of social skills - under the SEAL (social and emotional aspects of learning) strand. Although the students who really act out tend to get priority.
Secondary school where I worked, we had fortnightly social skills afternoons for the group we had on the autism spectrum. All ages, but teaching them ways to join in games, how to use a bus, or a shop - social skills taught explicitly. Mind you, lunchtimes there was a safe supervised room and most of them were to be found in there playing trumps card games together most days.
Going back to my daughter, the stuff she's enjoying socially now are role playing games and walking groups. Although she's playing her own games with the rpg - working out how to break the game master's plans without breaking the game for everyone else. (He reckons it keeps it interesting and allows repeats because the games don't work out the same way twice, but she has be aware of the others involved).
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Mugs - Keep the Ship afloat
Posts: 13794 | From: outiside the outer ring road | Registered: Aug 2006
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Boogie
Boogie on down!
# 13538
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Posted
quote:
Originally posted by Daffodil:
"Hello! " to anyone who knows me from other Christian websites or 365, and "hello" to anyone who doesn't know me!
Welcome to the Ship Daffy <huge wave> (not of the ocean type!) Great to have you aboard!
![[Yipee]](graemlins/spin.gif)
I was talking to our SEN Co-ordinator today. We agreed that the biggest task any teacher of any child has is finding the line between support and challenge - then treading it carefully.
This is true whether the child has SEN or not. SO much goes undiagnosed, in my experience, that we need to have the mindset that ALL children have special needs and deal with them as individuals, not labelled groups.
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Garden. Room. Walk
Posts: 13030 | From: Boogie Wonderland | Registered: Mar 2008
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busyknitter
Shipmate
# 2501
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Posted
quote:
Originally posted by Daffodil:
As an occasional lurker on the ship I popped in searching for theological debate, and spotted this thread.
"Hello! " to anyone who knows me from other Christian websites or 365, and "hello" to anyone who doesn't know me!
I have a teenager with autism and will try and remember to return to read updates on this thread.
<waves to Daffodil> Hi there, and welcome to the Ship.
My youngest also has autism. He is a couple of years away from teenagerhood and we are nervously aware that our stable, if rather wacky status quo may soon disappear in a puff of hormones.
![[Ultra confused]](graemlins/confused2.gif)
[ 02. October 2012, 12:11: Message edited by: busyknitter ]
Posts: 903 | From: The Wool Basket | Registered: Mar 2002
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Niminypiminy
Shipmate
# 15489
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Posted
quote:
Originally posted by Lamb Chopped:
Thank you, everybody, for such great and thoughtful posts. My son has no academic issues to speak of, it's all social--and his issues there are mainly of the "you're a nerd, therefore we don't like you" type. Which certain adults at his school seem to think should be handled by changing LL. Which pisses me off.
I would very much like to get him into something where he could learn in very practical ways how to handle things like a) joining in a game that is already in progress on the playground, b) dealing with bullying and teasing, c) coping with the fact that his classmates would rather play videogames than invent stuff, and probably come from bookless homes. (Yes, I'm snide and bitter too, but this is really getting my goat.) I'm not really sure where I can find something like this, though--or if it even exists.
LC, my son has had help of the kind that you wish for LL, at his mainstream state UK school. They have a programme of social skills support for children who need it.
But he needs it because he has Asperger Syndrome, and it's not just that he needs a bit of help and then he will be able to be his geeky self, and anyway he's a genius, but because he will always need more help and support, and will always have difficulties -- even though he is the bravest person I have ever met, and handles his difficulties with amazing valour -- and he's not a genius either. He does ok, even well academically, but he struggles with a lot of things about being taught, like accepting that he has to practice, and that you can't get everything right first time. That makes learning hard, on top of having considerable social difficulties in and outside of the classroom.
I suppose this is a way of saying that for those of us who have gone through the -- very tough -- process of accepting that your child has special needs, it can be sometimes hard to hear about these brilliant, geeky children who are special only because they're a little bit different from the norm. That isn't to say that I don't know how hard it can be to parent one of those (my other son falls into that category). But it isn't the same kind of hard as with my elder son (the one with AS). I guess this is me being bitter now, because one of the things that is hard about parenting a child who does have a diagnosis is that you don't have the consolations that come with saying 'well, he's just a little bit different'.
Anyway, my experience (which is in the UK, and I am aware there are differences in the way things are handled in other countries) is that a diagnosis is extremely hard to get -- people fight for years to have confirmed by a professional what they already know themselves. And they do it because it's the key to getting their child the help she or he needs. So from my perspective, a diagnosis isn't quite the scary thing that it looks like from the other side of the fence. But it also sounds as if, if you were in the UK (which I know you're not), you wouldn't be staring a diagnosis in the face anyway
[ 02. October 2012, 13:39: Message edited by: Niminypiminy ]
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Lives of the Saints: songs by The Unequal Struggle
http://www.theunequalstruggle.com/
Posts: 776 | From: Edge of the Fens | Registered: Feb 2010
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Nick Tamen
Ship's Wayfaring Fool
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Posted
Another parent of a child with Aspergers and ADHD here. He was diagnosed with ADHD at age 7 and with Aspergers's the day before his 8th birithday (yes, I remember the exact day), though at that point the diagnosis was really confirmation of what we had suspected for some time. He turns 15 in a few days.
He has been fortunate that we live somewhere there are many services available, that he has been in schools that, for the most part, provided very good support and that he has (again, for the most part) had very supportive teachers.
He's a freshman in high school now, and we've seen a real shift in him over the last 6 months or so. There have been a number of things at work, we think, but at least in part, this seems to have come from a surprising awakening of real self-awareness. He not only can see where his challenges are and what he wishes were different, especially in the social realm, but he believes that he can do something about them. It's interesting to watch -- it's like we can see his brain working overtime to catch up developmentally. What we've all noticed is that he just plain seems happier and more willing to put himself out there. We are very thankful!
Lamb Chopped, I wonder if you need to have a conversation with your child's principal and/or with the someone in your school system who is responsible for special ed/special needs. Something like that might be what's needed to help the teacher see that she needs to back off.
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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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mertide
Shipmate
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Posted
Lamb Chopped: If the main issue is that your son is shy and socially awkward at times, perhaps you could see what sort of local clubs he might enjoy where he gets to spend time socializing with other boys his own age that might share other common interests. Also, if he's being bullied, sometimes developing physical confidence can make him less obviously a target.
Have you looked at Cub scouts (I understand in the US those clubs are often sponsored by churches), sports (soccer, little athletics, swim club, martial arts, baseball) music groups (choir, bands). I'm sure you can think of other groups he might enjoy, that would give him a chance to meet other congenial boys and make friends (and maybe get a posse together at school).
Social skills are learned, not innate, and lots of practice with his peers in safe fun activities could make a big difference to his next years. My youngest is probably mildly Aspergers (high functioning engineer) but got through his social awkwardness on the back of playing Rugby, and also trumpet in a band. When he got to Uni, he suddenly found himself with 200 guys just like himself, but in school he needed encouragement to get out of his head and into the world.
Posts: 382 | From: Brisbane | Registered: May 2003
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Lamb Chopped
Ship's kebab
# 5528
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Posted
quote:
Originally posted by Niminypiminy:
But he needs it because he has Asperger Syndrome, and it's not just that he needs a bit of help and then he will be able to be his geeky self, and anyway he's a genius, but because he will always need more help and support, and will always have difficulties -- even though he is the bravest person I have ever met, and handles his difficulties with amazing valour -- and he's not a genius either. He does ok, even well academically, but he struggles with a lot of things about being taught, like accepting that he has to practice, and that you can't get everything right first time. That makes learning hard, on top of having considerable social difficulties in and outside of the classroom.
I suppose this is a way of saying that for those of us who have gone through the -- very tough -- process of accepting that your child has special needs, it can be sometimes hard to hear about these brilliant, geeky children who are special only because they're a little bit different from the norm. That isn't to say that I don't know how hard it can be to parent one of those (my other son falls into that category). But it isn't the same kind of hard as with my elder son (the one with AS). I guess this is me being bitter now, because one of the things that is hard about parenting a child who does have a diagnosis is that you don't have the consolations that come with saying 'well, he's just a little bit different'.
Look, this kind of hurts. I am very well aware of our blessings in not having an even more difficult situation to deal with--but that doesn't make the situation we DO have, any easier. I am watching LL for signs of the same depression I had at his age, for the same reasons--and I was suicidal. So the stakes here are a bit high too.
Would you prefer I take myself and my son out of the thread? I will, if you wish. And not come back until we've got a diagnosis that is good enough.
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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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busyknitter
Shipmate
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Posted
Oh crumbs, I'm sure that's not what niminypiminy meant LC. And AFAIAC this this thread is not only for shipmates who can present a diagnostic certificate at the door.
Over the years I have come across many, many children and young people who for a variety of reasons have no diagnosis but have autistic traits or quirks - call them what you will.
It seems to me that in some ways these young people (and their parents) can suffer much more than severly autistic kids like my son, who doesn't know he's different and is mostly happy in his own world.
Anxiety and depression amongst children and teenagers at the higher functioning end of the spectrum is sadly all too common and also frequently misunderstood by education and health services. It sounds like you are right to keep your radar on the alert for signs of problems.
Posts: 903 | From: The Wool Basket | Registered: Mar 2002
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Boogie
Boogie on down!
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quote:
Originally posted by busyknitter:
Over the years I have come across many, many children and young people who for a variety of reasons have no diagnosis but have autistic traits or quirks - call them what you will.
Absolutely. The same is true for ADHD, dyslexia, dyspraxia, fragile X and many other conditions and Specific Leaning Dificulties.
I have been teaching for 35 years and I can honestly say that every class has had children who displayed traits but had no diagnosis.
(This is true of adults too, of course, as none of these conditions magically disappear one we reach 18)
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Garden. Room. Walk
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Caissa
Shipmate
# 16710
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Our oldest son with AS is really struggling with Math in grade 10. Last night we tried to work on factoring and he was clearly not getting it, mentally shutting down and then had a meltdown which prevented him from doing his comparatively easy English homework. He went to bed at 8. He has got so much negative self-talk that he can't get beyond it to try and see the material. We have a meeting with his Math teacher tomorrow morning.
Our son was diagnosed prior to kindergarten. He received the best all-round student award in k and grade 2. It has been painful, to say the least, to watch him go from that to struggling academically in high school. Despite having a diagnose for 10 years I often find myself sliping into the denial phase.
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Niminypiminy
Shipmate
# 15489
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Posted
LC, I tried to PM you with an apology, but your PM box was full. I'll try to send it again another time.
I too worry about depression and suicidal thoughts. Nimlet1 first said 'I want to kill myself' when he was 7.
Caissa, I know what you mean about 'mental shutting down' and not being able to be helped. Last night Nimlet1 wanted to do some cooking -- all fine, except that he cannot accept that cooking is something with rules, and you can't just make up what's in your head without knowing the basics. The result was a huge meltdown and then a huge mess (he also has dyspraxia which means that when cooking stuff goes everywhere), and complete exhaustion all round.
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Lives of the Saints: songs by The Unequal Struggle
http://www.theunequalstruggle.com/
Posts: 776 | From: Edge of the Fens | Registered: Feb 2010
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Lamb Chopped
Ship's kebab
# 5528
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Posted
Look, I'm sorry too. Don't worry about it.
I'm just so incredibly frustrated because of people pontificating (see: teacher, counselor) who don't know what the fuck they're dealing with (counselor = new grad) and who, by the simple act of notifying me that there are problems, expect me to somehow magically Make Them All Go Away. Which isn't possible short of withdrawing the kid from school. And then get all righteous on me about how "LL was embarrassing himself today" or "you really need to know that other children are being disturbed by his tics." Uh no, I really don't need to know that, you have told me so umpteen times already, and short of wrapping him in duct tape before I drop him off at school, I don't see how you expect me to stop the difficulty from 30 miles away. It's you who's handling the seating arrangements in the classroom, who's present when the humming begins, who has the responsibility for making an attempt (however unsuccessful) to teach other children to tolerate minor annoyances from one another. What am I supposed to do, beat him?
I'm so tired of being made to feel inadequate and ashamed of my own obviously deficient parenting.
Now I've got to find a way to get this bloody piece of paper (which is going to cost us beaucoup dollars in medical costs) and which isn't going to fix anything anyway. Its only value will be to roll up and beat idiots over the head with. And that's what I'm in a mood to do, so I suppose it will be worth it.
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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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Ruudy
Shipmate
# 3939
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Posted
Welcome, Dafodil!
Praying through this thread. May God's grace pour into all of us as we deal with these challenges.
We are in the midst of some testing for Tigger and had a bit of good news. The educational psychologist has not finished her evaluation but on Monday she told Suusan that Tigger tested at genius level in his verbal IQ.
I found this shocking because he "failed" two out of four speech and language tests last week! Turns out he has exceptional comprehension and vocabulary but has difficulty forming words. He "gets it" and processes well but has to work hard to physically mouth the response. Often he opts for peaceful silence. His brothers never stop talking.
His OT will start again soon and we will start looking into SLP interventions. Feels like we're starting to move in the right direction.
[ 04. October 2012, 03:01: Message edited by: Goar ]
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The shipmate formerly known as Goar.
Posts: 1360 | From: Gatorland | Registered: Jan 2003
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comet
Snowball in Hell
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Ms Lamby - I've got a nice long message for you twiddling it's thumbs on my desktop. please tidy out your PM box; or, if you prefer, send me your email address. I think I have some strategies that might help.
deep breaths, sister!
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Evil Dragon Lady, Breaker of Men's Constitutions
"It's hard to be religious when certain people are never incinerated by bolts of lightning.” -Calvin
Posts: 17024 | From: halfway between Seduction and Peril | Registered: Sep 2005
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Lamb Chopped
Ship's kebab
# 5528
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Ooooh, strategies. Just what I need. I've flushed (well, some haven't gone down) so I hope there'll be room...
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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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amber.
Ship's Aspiedestra
# 11142
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Very close now to the point where autism stops having 'higher functioning' or 'Asperger syndrome' categories. It'll all just be 'autism spectrum' from early next year (new DSM V). Plenty of good research showing that it was the higher functioning people who end up with the greatest number of difficulties, not least because people think we can cope.
In the UK, the work I'm doing as an Adviser to the Government APPGA, schools, etc means that there should be much better access to sensible help and support for families, fairly soon. Fingers crossed.
Meantime, huge huge numbers of families are still wading through heck in school systems that were never designed to handle many special educational needs, and especially not set up for autism.
We'll get there. I hope.
If it's any consolation, our own fine lad (lower foothills of the autism spectrum, dyspraxia, short term memory difficulties, dyslexia) strugged through all sorts of obstacles with us....and went on to be school Prefect, play national level rugby, and is now at Uni (heavily supported) studying psychology and counselling.
Was it worth the 19 year of heck to get him there? Yup.
Posts: 5102 | From: Central South of England | Registered: Mar 2006
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Ruudy
Shipmate
# 3939
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Posted
While it was nice that Tigger (our 4 year old Rudlet with signs of serious dyspraxia) tested high on the verbal comprehension, we received last week the results from the educational psychologist evaluation, and it was painful reading Tigger's percentiles in space/proprioception, gross and fine motor skills, and speech. The report makes clear that these root delays are now causing him to lag in other areas as well.
I have long wanted someone to take us seriously and help us find out what is going on. But reading the psychologist's comments and seeing the numbers on paper was depressing. She made some phone calls and got us in to see a pediatric neurologist on Monday.
Have you been to a pediatric neurologist? Was there any advice you received in advance that you'd like to pass on? I will google and do some research online to prepare, but would also appreciate any thoughts or suggestions you have in advance of this appointment.
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The shipmate formerly known as Goar.
Posts: 1360 | From: Gatorland | Registered: Jan 2003
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Josephine
Orthodox Belle
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Posted
quote:
Originally posted by Ruudy:
Have you been to a pediatric neurologist? Was there any advice you received in advance that you'd like to pass on? I will google and do some research online to prepare, but would also appreciate any thoughts or suggestions you have in advance of this appointment.
Yep, we've done pediatric neurologists. Several of them, in fact. One was useless, one was worse than useless, and two were wonderful.
Keep in mind that many pediatric neurologists are really subspecialists -- they mostly do epilepsy, or mitrochondrial disorders, or whatever it is that they do. If your child doesn't fit their box, they might tell you that your child doesn't have X, Y, or Z, and think that they've done their job. Be ready to follow up with "Well, if it's not X, Y, or Z, what is it that's causing these difficulties? If you can't figure it out, can you refer us to someone who can?"
If they try to blame the child's difficulties on a psychiatric diagnosis, or on bad parenting, leave, and don't go back. A neurologist is not an expert on psychiatric disorders. A child can have both neurological and psychiatric difficulties, and one can contribute to the other, so if you're dealing with both, you need a larger team that works well together. (That's not to say that even an excellent parent can't learn new tricks for helping their child with special needs. And if you end up wanting information about assembling a team to work with you and your child, send me a PM.)
The neurologist probably can't tell you up front what exactly they're going to do to evaluate your child. If they're good, often the results on one test will suggest what test to do next. It's also very likely that they'll refer you to other specialists for additional testing -- an audiologist, developmental optometrist, SLP, OT, PT, and so on and so forth. The neurologist may then take all the additional reports and help you make sense of them all. Or they may not. It really varies.
You will feel overwhelmed with the reports that you get from the neurologist and any other specialists that are involved. Ideally, the reports will include practical suggestions for how you can help your child. You won't absorb it all on the first reading. And even if you could, you can't implement everything all at once. Don't try. Give yourself and your child time.
Hang in there. This phase of special-needs parenting is in many ways the hardest. You'll get through it.
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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
Thank you, Josephine. Your post was quite helpful in managing our expectations. Suusan and I read it before we went in for the appointment. We were first visited by a student doctor who came in and did some brief tests. She proceeded to inform us that Tigger had a "strength" problem for which they could recommend some dietary changes. Thanks to your post, I did not go 100% ballistic on her! I just thought "Well, it may take several tries before we find a decent neurologist."
Then the head of the practice came in. He had clearly read the reports. He set Tigger at ease and made him laugh. Asked him to do various activities and sequenced motions. He asked about diagnoses of his cousins, etc. He very quickly concluded that the problem was not strength, but in sequencing. He asked us if this made sense to us, which it did. He wrote us a script for OT, MRI and EEG that stated that Tigger has dyspraxia. He assured us that he would not leave us hanging.
The only frustrating part right now is that we have to go have all this testing done and wait for two months before our next appointment. I want to get on with this and not wait around. I have to pray for patience and know that we are getting on with some interventions like OT and SL therapy. And I can pray that Tigger will socialize well at school and not become discouraged, anxious or frustrated. He is such a kind, precious and tenacious little boy.
[ 16. October 2012, 12:52: Message edited by: Ruudy ]
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The shipmate formerly known as Goar.
Posts: 1360 | From: Gatorland | Registered: Jan 2003
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Lamb Chopped
Ship's kebab
# 5528
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Posted
Update: our situation is rapidly going to hell, but I have a meeting tomorrow with an uninvolved professional who I hope will be able and willing to help me make sense of all this.
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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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Starbug
Shipmate
# 15917
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Posted
quote:
Originally posted by Lamb Chopped:
Update: our situation is rapidly going to hell, but I have a meeting tomorrow with an uninvolved professional who I hope will be able and willing to help me make sense of all this.
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“Oh the pointing again. They're screwdrivers! What are you going to do? Assemble a cabinet at them?” ― The Day of the Doctor
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Ruudy
Shipmate
# 3939
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The shipmate formerly known as Goar.
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