Thread: Children with special needs Board: Oblivion / Ship of Fools.


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Posted by Niminypiminy (# 15489) on :
 
Do any other shippies have a child/children with special needs?

If you have, and you'd like a thread where you could moan and whinge (I seem to need to do a lot of that), ask advice, share experiences and even good news, then this might be it.

I've got two children, the elder of whom has Asperger Syndrome. We're all going through a hard time at the moment, although as things have been better in the past I have to trust they will be better again.

I know a couple of parents of children with AS in RL and having people who know what parenting a child with special needs is like is a life-saver. Having that support here too would mean a lot to me.
 

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Posted by Josephine (# 3899) on :
 
There are a bunch of Shippies with special-needs kids. In fact, we used to have a private board, but it fell into disuse.

A special thread here might be helpful. I'd be happy to participate.
 

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Posted by Niminypiminy (# 15489) on :
 
Excellent!
 

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Posted by Japes (# 5358) on :
 
I don't have children, but I do work with children and teenagers with a whole range of special needs. I'd be happy to join in from that point of view.
 

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Posted by Zacchaeus (# 14454) on :
 
Mine might have grown up and left home but they still have special needs...
 

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Posted by Josephine (# 3899) on :
 

quote:

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Originally posted by Zacchaeus:
Mine might have grown up and left home but they still have special needs...

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Some of mine are all grown up, some aren't.

And all grown up sometimes (not always, but sometimes) looks different for someone with special needs.
 

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Posted by Welease Woderwick (# 10424) on :
 
Has this thread got a future? It was started and a few folks seemed keen then I found it on Page 5.
 

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Posted by Niminypiminy (# 15489) on :
 
It's my fault, I let it languish, having started it up in a rush of enthusiasm.

I used to post on another forum which was dedicated to children with special needs, but it was dominated by parents who couldn't see past their own children's situation, and whose lives were dedicated to their children's special needs.

While my son's condition shapes my life in particular ways, it isn't the whole of it, and I don't feel that he is the most disadvantaged person in the whole world. So now I don't visit that forum. But it does help to talk to people in a similar situation sometimes, so I started the thread.

But it may be that this isn't the time and place -- if not maybe the thread should go.
 

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Posted by busyknitter (# 2501) on :
 
I'll be happy to play. My younger son is autistic, severe end of the spectrum.
 

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Posted by Welease Woderwick (# 10424) on :
 
I think we're happy for the thread to be here if it keeps moving - I don't mean racing, though sometimes it might then it will slow down again. I think it is a useful thing to have around.
 

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Posted by Smudgie (# 2716) on :
 
I too work with children with a wide range of special needs / disabilities / complex health needs. While I cannot talk about my work here, this is a thread which I will find interesting. Before my current job I worked for 20 years as a mainstream school teacher with particular interest in special needs and for part of that time was SENCO (for my sins!)
I also have a son, no longer at home, with severe Attachment Disorder.
 

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Posted by Curiosity killed ... (# 11770) on :
 
I'm another one with an interest in special needs having worked in special needs for most of my working life and with a daughter with dyslexia / specific learning difficulties (educational psychologist assessed several times over).
 

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Posted by Boogie (# 13538) on :
 
My eldest son has ADHD - not grown up and doing well, but I still worry about him (of course!)
 

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Posted by PeteC (# 10422) on :
 
If there is new need for It's not Holland,perhaps a petition to Simon (together with some filthy lucre, and the name of a volunteer host) could be of some benefit.

I believe the old board is archived, but it could be resurrected.

closing parentheses - gah.

[ 08. September 2012, 09:35: Message edited by: PeteC ]
 

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Posted by comet (# 10353) on :
 
if this thread gets legs, I'll be following. Technically, the only real special needs person in my family is probably me*; but my youngest is becoming more and more eccentric as he grows and I'm finding myself challenged in all new ways. I will take all of the ideas I can get.


*perhaps my kids can join in and commiserate about bringing up mama.
 

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Posted by Boogie (# 13538) on :
 

quote:

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Originally posted by Boogie:
My eldest son has ADHD - not grown up and doing well, but I still worry about him (of course!)

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Oooops - NOW grown up, not not

 

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Posted by Niminypiminy (# 15489) on :
 

quote:

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Originally posted by Boogie:

quote:

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Originally posted by Boogie:
My eldest son has ADHD - not grown up and doing well, but I still worry about him (of course!)

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Oooops - NOW grown up, not not

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quote:

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Originally posted by Enigma:
For all you parents with unusual children - just treat them as usual - it worked for me anyway!

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quote:

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Originally posted by Josephine:

quote:

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Originally posted by Enigma:
For all you parents with unusual children - just treat them as usual - it worked for me anyway!

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Thank you for the encouragement, Enigma. Some of us have children, though, whose needs can't be met if we "just treat them as usual." Unless you define "as usual" to include regular blood glucose testing and dietary restrictions for the child with Type I diabetes, or physical therapy and occupational therapy for the child with severe fine motor impairments, or instruction in Braille and the use of a cane for a child who is blind, or, well, any of a number of other unusual things that some children need, but most don't.

That's often what's hardest about being a parent of a child with special needs. You want to treat them like typical children. And in some ways and at some times, you can. But the reason that they're considered to have special needs is that they genuinely, truly have needs that other children don't have.

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quote:

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Originally posted by Qestia:
He's an amazing brilliant creative enthusiastic kid, but increasing becoming oppositional and defiant about the smallest diagreements. He's always been intense, but I feel things are getting worse, or got worse over the summer

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quote:

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Originally posted by Loveheart:
Both my son and I have Asperger Syndrome.

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quote:

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Originally posted by Josephine:

quote:

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Originally posted by Qestia:
He's an amazing brilliant creative enthusiastic kid, but increasing becoming oppositional and defiant about the smallest diagreements. He's always been intense, but I feel things are getting worse, or got worse over the summer

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Are you familiar with the book, The Explosive Child? It is the best book out there for helping parents manage children who are oppositional and defiant. No blame, no shame, just a focus on identifying missing skills and then teaching those skills, and on identifying and solving problems.

An excellent resource for parents of twice-exceptional children (i.e., children that are both cognitively gifted and disabled in some way) is the GT-Special listserv.

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quote:

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Originally posted by Doublethink:
Dyspraxia is a developmental disorder, it is more likely to be evident when the child is a little older - so it doesn't surprise me it wasn't picked up earlier. It just may not have been diagnosable at that point.

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quote:

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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.

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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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Posted by Sir Kevin (# 3492) on :
 
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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Posted by Goar (# 3939) on :
 
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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Posted by Bronwyn (# 52) on :
 
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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Posted by Niminypiminy (# 15489) on :
 
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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Posted by Goar (# 3939) on :
 
for Bronwyn's daughter, Bronwyn and the whole family

quote:

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Originally posted by Josephine:
Littlest One's neurologist told us that a child not being interested in building toys is a Big Red Flag.

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quote:

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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.

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quote:

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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.

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quote:

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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.

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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.
 

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Posted by Josephine (# 3899) on :
 

quote:

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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.

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quote:

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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.

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quote:

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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).

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quote:

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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!

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Welcome to the Ship Daffy <huge wave> (not of the ocean type!) Great to have you aboard!




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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Posted by busyknitter (# 2501) on :
 

quote:

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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.

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<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.


[ 02. October 2012, 12:11: Message edited by: busyknitter ]
 

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Posted by Niminypiminy (# 15489) on :
 

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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.

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quote:

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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'.

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quote:

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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.

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quote:

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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.

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quote:

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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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Posted by Ruudy (# 3939) on :
 

 

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Posted by busyknitter (# 2501) on :
 

 

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Posted by Niminypiminy (# 15489) on :
 


Praying that the meeting goes well, and that it offers a way forward for the Lamb family.
 

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Posted by Lamb Chopped (# 5528) on :
 
I had the meeting. She suggests seeing a pediatric neurologist rather than the shrink the teacher and school counselor think is appropriate. Unfortunately the waiting list is months long, so we'll have to thole meanwhile. At least I have an idea of which specialty I need, which is helpful--and which simplifies the question of which insurance coverage I'll need too.
At this point there seems nothing to do but wait and pray. A special ed evaluation is in the works and I hope they know their stuff, what with that pair attempting to shove the situation in the direction of an autism diagnosis. Why they're so set on it I don't know, I'm not aware of any funding benefit to the school.
If he's got to be diagnosed with something official and medical, let it be the RIGHT diagnosis. Not the convenient or trendy one.
 

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Posted by Taliesin (# 14017) on :
 

quote:

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Originally posted by Doublethink:
I think that would have been picked up by the opthalmologist.

Dyspraxia is a developmental disorder, it is more likely to be evident when the child is a little older - so it doesn't surprise me it wasn't picked up earlier. It just may not have been diagnosable at that point.

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quote:

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Originally posted by Ruudy:
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.

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quote:

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Originally posted by Lamb Chopped:
I had the meeting. She suggests seeing a pediatric neurologist rather than the shrink the teacher and school counselor think is appropriate. Unfortunately the waiting list is months long, so we'll have to thole meanwhile. At least I have an idea of which specialty I need, which is helpful--and which simplifies the question of which insurance coverage I'll need too.
At this point there seems nothing to do but wait and pray. A special ed evaluation is in the works and I hope they know their stuff, what with that pair attempting to shove the situation in the direction of an autism diagnosis. Why they're so set on it I don't know, I'm not aware of any funding benefit to the school.
If he's got to be diagnosed with something official and medical, let it be the RIGHT diagnosis. Not the convenient or trendy one.

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I hope the fact you're on the waiting list gets the school off your back, at least. My son's diagnosis came from a very comprehensive testing at a developmental medicine center at a children's hospital. It was done by a team of a psychiatrist and a developmental pediatrician, so they looked at medical things, as well as doing behavioral screenings and extensive cognitive testing (IQ etc.). This could well work to your advantage--there's a lot of research out there showing that these quirks can just be a result of intellectual giftedness, rather than some disorder.

My son does sound similar in many ways. He's very smart, but struggles with negotiating the playground, falls out of his chair, "hoots." We're actually having a good fall with him. In addition to the speech therapy and occupational therapy he receives at school we are doing private OT, a private social skills group, and karate twice a week (and omega-3 vitamins). It's costing a lot of time and money but we've seen a lot of improvement from the summer. I've also been working with the school to make sure he has what he needs in class--fidget items, something to chew on, special cushions for the chair.

Some of these things might help your son, too.
 

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Posted by Lamb Chopped (# 5528) on :
 
Sounds lovely! I hope we can find some resources here. (another minor frustration--the school has piled on so much homework this year that I am shaking my head in disbelief. My kid gets to eat dinner and that's basically it. The rest of the afternoon and evening (till an hour after bedtime!) it's homework, homework, homework. When exactly do they expect us to fit in these hypothetical social skills classes that may or may not exist?
 

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Posted by Josephine (# 3899) on :
 
Lamb Chopped, when the school qualifies the little lamb for an IEP, you explain to them that, because of his medical needs, he has to have time for therapy, and he has to have time to rest. Therefore, his homework time must be limited to no more than X minutes per evening. Then you smile sweetly and ask them how they can best accommodate that? And then you wait.

And if they start to insist that homework is necessary, you repeat that, for medical reasons, it really isn't possible for him to do more than X minutes per evening, and tell them you're grateful for their flexibility, and ask them what, in their experience, is the best way to accommodate such a need?

They can figure out something reasonable.
 

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Posted by Lamb Chopped (# 5528) on :
 

 

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Posted by 3rdFooter (# 9751) on :
 
Josephine - That stratagem rings so true and it amazes me the circumstances where you have to use it.

When we emigrated back to this country where smallest footer had previously had a statutory statement*, the education authority wanted to put him in a mainstream school without support while they sorted their lives out.

I requested a letter absolving me from all responsibility from any health and safety issues to staff or other students from the cherub losing the plot and lashing out. Lo, and support became available.

*UK legalism entitling you to educational support
 

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Posted by Jane R (# 331) on :
 

quote:

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And, a headteacher said dismissively to a parent, 'Dyspraxia doesn't exist, it's just a fashionable word for being clumsy.'

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Ours thinks that Little J's migraines are psychosomatic... Fortunately the class teacher is more sympathetic. Especially after we pointed out that when she's having an attack at home she bangs her head against the sofa cushions, so leaving her unsupervised in a darkened room at school is Probably Not A Good Idea.
 

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Posted by Josephine (# 3899) on :
 

quote:

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Originally posted by Jane R:
Ours thinks that Little J's migraines are psychosomatic...

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Can you get a letter from the doctor explaining that migraine is a chronic neurological disease that is associated with significant levels of disability, and occasionally even kills?

Our youngest has developed severe chronic migraines. He has two to three migraines a week; basically, as one migraine starts to resolve, the next one cranks up. It is completely incapacitating.
 

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Posted by Jane R (# 331) on :
 
We've given them a doctor's letter, Josephine, but it just confirms the diagnosis of migraine without going into details. I am planning to do a letter about Little J's migraine symptoms, what causes it and how we are currently dealing with it (with footnotes and references) next week while we're having our half-term holiday. I don't have time to do it now as I'm catching up on work after three weeks of rolling migraines, rather like what you describe. And we've got another appointment with the specialist in November to see if the latest adjustment to her preventative medicine is working.

for you and Littlest One.
 

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Posted by Amorya (# 2652) on :
 

quote:

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Originally posted by Jane R:
Ours thinks that Little J's migraines are psychosomatic...

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quote:

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Originally posted by Jane R:
One of the things that does concern me is that she is being expected to stay in class and work as best she can during an attack.

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I was reading an article about caring for kids with migraine on a migraine support site, and they actually said that kids should be in school every day, migraine or no! I couldn't believe it. In addition to the headache and light and sound sensitivity, our boy has ataxia, dysphasia, and vertigo during his migraines. He can't be at school. He can barely function at home.
 

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Posted by Zacchaeus (# 14454) on :
 
That's ridiculous - I suffered from Migraine as a child and the only thing to help, was a darkened room and sleep. I might have stayed in school or class, but I was not functioning and learning.

I used to head bang at times too, it seemed to relieve the pain momentarily.

Has the teacher considered that she and her attitude, might be part of the psycosomatic (probably spelt wrongly) causes of the migraine?
 

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Posted by Ruudy (# 3939) on :
 
For those of you with children who have had ticks, did the ticks ever just come and go? Or once there always there?
 

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Posted by Josephine (# 3899) on :
 

quote:

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Originally posted by Ruudy:
For those of you with children who have had ticks, did the ticks ever just come and go? Or once there always there?

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One of ours had a throat-clearing tic for a while. It went away.
 

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Posted by Ruudy (# 3939) on :
 
Tigger frequently blows air out of his nose. It's like he's blowing his nose but without putting a tissue to it. Normally not an issue, but this week he has a runny nose and the whole thing is unpleasantly messy.

On a possibly related note, the speech evaluator said one of his problems is that he channels as much airflow through his nose as his mouth which results in some of his speech "idiosyncrasies". The director of the speech and language evaluation gave some positive news: she had never before had a four-year old score 100% in the area of repeating grammatical structures. (I heard this second hand but am looking forward to a conversation with her this week).

On an unrelated note, Tigger said the EEG he had this week was "Great." I think he enjoyed getting to stay up to the early hours of the morning playing board games with Suusan and watching videos. Apparently we won't get an appointment to look at results anytime soon unless there is something urgently wrong. So that means - more waiting...

*mini-rant/whine* Why does it seem like every kid has to have their birthday at Monkey Joe's bouncy castle place?!? Tigger is persistent but just can't keep up. Crawling up to the top to slide down is a major accomplishment. The three year-olds zoom past him, or he causes a traffic jam. He seems happy for a while before tiring of it and just wanting to go home.*mini-rant/whine over* He did seem to genuinely enjoy it for a while, and I even wonder if we should go more frequently just the two of us when it's slow there so he can get the exercise and go at his own pace.
 

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Posted by Lamb Chopped (# 5528) on :
 
Mine switches to a new tic after a few weeks. It's like a rota.
 

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Posted by Boogie (# 13538) on :
 
My youngest son had a tic - a bit like a twisty yawn. the doctor told us to mention it every time he did it to get him out of it.

It worked!
 

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Posted by Lamb Chopped (# 5528) on :
 
... though this might be counterproductive in other cases. The tics that last the longest with my son are the ones people comment on (negatively). Stress i think.
 

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Posted by Boogie (# 13538) on :
 
We were advised to make no fuss and to be positive, just to remind him when he was doing it to help him stop. Like I said, it worked.


 

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Posted by Taliesin (# 14017) on :
 
thi is interesting actually. I have a kid at school who is distressed by his tics, and people have been trying to help him in all kinds of ways. One of these was to encourage him to substitute one kind of tic (spinning on the spot) for another kind that was more acceptable (apparently) like scratching his knee.

I felt uncomfortable about this though I couldn't have told you why, and now the kid is a smouldering ball of teenage resentment who isn't responding to anything - though obviously, there is more to it than just tic reassignment. I'm going to start working with him therapeutically next week... I'll feedback in very general terms how we get on.
 

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Posted by Gwai (# 11076) on :
 
I can say that with my brother it worked to switch tics, but it was a slow process.
 

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Posted by Josephine (# 3899) on :
 
This website is a fabulous source of info on tic disorders (and much else besides).
 

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Posted by Ruudy (# 3939) on :
 
Thank you, Josephine. Very helpful site. I particularly liked the chart of common tics.

[ 30. October 2012, 14:30: Message edited by: Ruudy ]
 

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Posted by Ruudy (# 3939) on :
 
Okay.... MONOLOGUING. How do you deal with your children when they monologue?

Do you point it out? Do you feign interest? Do you keep reading your book but nod and say "mm, hmmh" every once in while? Do you interrupt? Do you interject that it is selfish and inconsiderate?

After forty minutes of facts about tigers without a single pause, do you say lovingly to your seven year old that you really couldn't give a $%^& about tigers? Or do you look them in the eye and say "Please stop talking."? What do you do when your other three young sons can't speak to you or each other and one of them becomes visibly distressed to the point of screaming?

Experience, strength, hope or resources anyone? Cause I'll take whatever I can get. I've googled this to death and am coming up empty handed.
 

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Posted by Curiosity killed ... (# 11770) on :
 
That sounds very ASD. He needs the social skills to not get murdered in life so you need to teach him this will not get him friends and influence people.

How about giving him time to talk but limit it using an hour glass? Start with a script that says, "I'm so glad you like tigers, but people can't listen for very long, you can tell me about them for as long as this hour glass (well 2 minute timer) runs?"

Suggest that he produces a scrapbook folder about his enthusiasm and shows you at the end of the day - and tell him for good practice he needs to limit it to 5 minutes, otherwise you can't take in any more?

And at other times, remind him that he has his scrapbook and that his teddies would be good to practice his 5 minutes on, because they can listen for ever, but humans can't?
 

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Posted by Jane R (# 331) on :
 
Monologuing, eh?

(I must admit, my first thought when I saw that word was 'Before I kill you, Mr Bond...')

Ahem. CK's ideas are all good. I am not an expert on this type of problem, but maybe if he struggles with allowing other people to take turns in conversations you could have a stuffed toy or a cap or something that the person whose turn it is to speak gets to hold/wear? "It's Jack's turn to speak; he's holding the elephant" Or would he think that was babyish? I've forgotten how old he is... playing boardgames might also help with learning turn-taking.

Little J is going back to the migraine clinic next week - we're not doing very well here, she had a migraine a day during the half-term holiday and has had four this week. I am sticking straws in my hair whilst trying to catch up on my work. How is Littlest One getting on, Josephine?
 

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Posted by Jane R (# 331) on :
 
Sorry, just noticed you said he was seven, so the stuffed toy idea may be a bit babyish. Not having a good day here... (wanders off to stick more straws in the hair)

[ 09. November 2012, 09:39: Message edited by: Jane R ]
 

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Posted by Curiosity killed ... (# 11770) on :
 
Jane R - has anyone said CFS/ME? Migraine like headaches can be a symptom. Normal migraines tend to give you a break between them, don't they? (Well, they do me)
 

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Posted by mdijon (# 8520) on :
 
Some unlucky people certainly do get migraines every day though.

Migraines are indeed "all in the mind" in the same way that strokes and Parkinson's disease are.

I've noticed a funny tendency for people to have limited sympathy for children complaining of pain without a visible external illness. Perhaps because children often moan about inconsequential pain and we think good parenting is teaching them to ignore it. Unfortunately for children who are really suffering this is very counter-productive.

I hope something turns out to work at the clinic.
 

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Posted by Jane R (# 331) on :
 
(to CK) It's probably not CFS/ME. In between migraines she is perfectly normal - riding, swimming and dancing in her spare time and she's just talked me into volunteering as a dog-walker for the RSPCA so she can help me take dogs for walks. Doesn't sound like chronic fatigue to me. My mother gets migraines as well; hers used to last up to three days with added vomiting, so it could be worse.

(to mdijon) I think that may be part of the problem with the headteacher. Her class teacher isn't quite so unsympathetic, but she's leaving at the end of the term and who knows what will happen after that... and it's a big class, with lots of noisy boys in it, so the chances of a small girl who goes quiet when she's not well being overlooked are quite high.

Thanks for the sympathy, both of you.

[ 09. November 2012, 13:35: Message edited by: Jane R ]
 

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Posted by Nick Tamen (# 15164) on :
 

quote:

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Originally posted by Ruudy:
Okay.... MONOLOGUING. How do you deal with your children when they monologue?

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quote:

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Originally posted by Nick Tamen:
"I'd love to hear about it, but do you see that I'm reading this book/trying to help your sister get dressed/cooking/etc.? That's a signal that I can't give you my full attention right now."

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quote:

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Originally posted by Jane R:
Sorry, just noticed you said he was seven, so the stuffed toy idea may be a bit babyish. Not having a good day here... (wanders off to stick more straws in the hair)

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He is seven but with three younger brothers. They have all recently taken to several stuffed toys. This is age appropriate for him right now. Thank you. Praying for you and Little J.

Thank you all for sharing. I really appreciate your insights and will try to incorporate them. My post above was intended to display a certain sense of humor about things. Reading it now, I can see my frustration coming through. While it may not sound like it, Suusan and I are patient parents but are wearing thin in some areas. Our misdirected efforts to remain patient may mean we not have given our son some direction he needs.

quote:

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Originally posted by Nick Tamen:
The thing about kids with ASD is that they can learn (and need to learn) to pick up on all of these non-verbal cues. They just don't learn them at an early age by observation like most kids do; they need to be taught them.

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quote:

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Originally posted by Ruudy:
Okay.... MONOLOGUING. How do you deal with your children when they monologue?

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quote:

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Experience, strength, hope or resources anyone? Cause I'll take whatever I can get. I've googled this to death and am coming up empty handed.

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quote:

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Originally posted by Jane R:
Little J is going back to the migraine clinic next week - we're not doing very well here, she had a migraine a day during the half-term holiday and has had four this week. I am sticking straws in my hair whilst trying to catch up on my work. How is Littlest One getting on, Josephine?

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quote:

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Originally posted by Josephine:

It was a lot of work getting to that point. But you've got lots of time.

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quote:

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Does Little J have a noticeable prodrome or postdrome?

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quote:

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My post above was intended to display a certain sense of humor about things. Reading it now, I can see my frustration coming through.

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quote:

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Originally posted by Jane R:
Josephine:

quote:

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Does Little J have a noticeable prodrome or postdrome?

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Difficult to say. <snip> This is probably one of the reasons certain persons at the school are being sceptical - they find it difficult to believe that she can be half-comatose one minute and back to normal the next.

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quote:

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Thanks for the tip about tinted glasses - we will ask the specialist about that tomorrow. I was wondering whether osteopathy might help as well (the osteopath who treats my bad back is also qualified as a paediatric osteopath). We've been getting our information from http://www.migraineadventure.org.uk/ which is run by a British migraine charity, but I will check out yours too - more information is always useful.

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quote:

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Originally posted by Jane R:
Brain fog? That rings a bell... sometimes Little J gets very angry and says things like 'I'm stupid!' when she's coming out of a migraine - though that's not saying much at the moment, she seems to be having them nearly all the time. I wonder if she's experiencing the same thing? Of course I've been telling her she's not stupid and she shouldn't say things like that about herself, but if it's a side-effect of the migraine maybe what she means is 'my brain isn't working normally at the moment'.

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quote:

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She's usually very articulate, but her language ability seems to shut down when she's having a migraine; she can point to where it hurts but she can't describe what the pain feels like.

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quote:

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Originally posted by Curiosity killed ...:
(You do know brain fog, aphasia and non-epileptic seizures are all CFS/ME symptoms?)

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quote:

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What is a non-epileptic seizure?

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quote:

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Since CFS/ME and migraine are both diagnoses of exclusion, what are the symptoms that would tell you whether you had one, or the other, or both? Does CFS/ME include a one-sided headache? Does it include photophobia and phonophobia?

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quote:

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Is there any effective treatment for CFS/ME?

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quote:

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What would be different about treating chronic migraine vs treating CFS/ME?

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quote:

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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).

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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.

[/Tangent]
 

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Posted by Josephine (# 3899) on :
 

quote:

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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.

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quote:

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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.

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quote:

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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.

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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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Posted by Lamb Chopped (# 5528) on :
 
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.
 

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Posted by Josephine (# 3899) on :
 

quote:

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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.

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quote:

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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.

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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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Posted by Lamb Chopped (# 5528) on :
 
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. 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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Posted by Jane R (# 331) on :
 
Lamb Chopped:

quote:

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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.

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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.
 

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Posted by Lamb Chopped (# 5528) on :
 
Awesome!
 

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Posted by Ruudy (# 3939) on :
 
Great news!
 

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Posted by Moo (# 107) on :
 

quote:

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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.

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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.

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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Posted by Lamb Chopped (# 5528) on :
 
Aauuugghhhhh!!!! Yes, that sounds very familiar somehow.

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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Posted by Lyda*Rose (# 4544) on :
 
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.
 

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Posted by Jane R (# 331) on :
 
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?
 

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Posted by Lamb Chopped (# 5528) on :
 
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...

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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Posted by Josephine (# 3899) on :
 

quote:

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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.

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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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Posted by Lamb Chopped (# 5528) on :
 
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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Posted by Josephine (# 3899) on :
 
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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Posted by Ruudy (# 3939) on :
 
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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Posted by Curiosity killed ... (# 11770) on :
 
Glad that the birthday party went well, and that there's so much good news about diagnosis and support.
 

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Posted by birdie (# 2173) on :
 
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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Posted by Jane R (# 331) on :
 
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...
 

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Posted by maryjones (# 13523) on :
 
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!
 

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Posted by Josephine (# 3899) on :
 

quote:

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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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Posted by Chorister (# 473) on :
 
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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Posted by birdie (# 2173) on :
 
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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Posted by Josephine (# 3899) on :
 

quote:

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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.

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quote:

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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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Posted by Josephine (# 3899) on :
 
The glasses with the FL-41 tinted lenses arrived today. Not-So-Little is wearing them. He says they make him feel weird -- but he hasn't taken them off. So we'll see how it goes ....
 

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Posted by Jane R (# 331) on :
 
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.
 

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Posted by Niminypiminy (# 15489) on :
 
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.

[ 17. December 2012, 10:39: Message edited by: Niminypiminy ]
 

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Posted by Josephine (# 3899) on :
 

quote:

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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?

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quote:

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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

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quote:

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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.

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quote:

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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?

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quote:

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Originally posted by Jane R:
And call me a cynic, but this bit:

quote:

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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.

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sounds like he's having problems with this one teacher... could a clash of personalities be involved here?

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quote:

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Originally posted by Lamb Chopped:
I was told at the meeting that they would provide all teachers with his diagnosis. Are private schools different then?

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quote:

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I agree with you'al who think she's grinding some sort of personal axe, though I can't really wrap my head around the idea of a teacher behaving in such a way to a child -- what's the motivation?

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quote:

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Originally posted by Chorister:
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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Actually I think it's more complicated than that and I'm sure varies from school to school.

Earlier this year I worked as short term finance officer in a private school in England. This was a mainstream school with a very high academic reputation. Both the Junior and Senior sections of the school had SENCOs employed as part of the normal school establishment and as far as I could tell, put a huge amount of effort into identifying and responding to children's additional needs as they arose.

Yes, parents had to pay for any additional assessments or therapists, for example an educational psychologist report or if any 1:1 time with a dyslexia specialist was recommended. But where it was simply a matter of adapting classroom practice to deliver an IEP, it just happened.

That kind of school wouldn't do for my autistic son as he needs a very specialist environment, but they did have pupils with aspergers, ADHD, dyspraxia, physical disabilities.

Also LEAs do fund mainstream private schools where there is a statement of special educational needs in place.

[ 19. December 2012, 15:20: Message edited by: busyknitter ]
 

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Posted by Josephine (# 3899) on :
 
Frustrated with the local school. Youngest One withdrew last semester (at the suggestion of the special ed people), because he wasn't well enough to do any schoolwork on any kind of regular basis. We all agreed he should focus on getting healthier. But he is at least somewhat healthier now, and he wants to start back with an online class, so we've asked (repeatedly) what we need to do to get him re-enrolled, and they are putting us off and ignoring us.


 

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Posted by Jane R (# 331) on :
 
Sorry to hear that, Josephine. I don't know what alternatives might be available where you are, but over here I'd be looking into the possibility of getting Little J enrolled in distance learning FE courses. Or having a go at teaching her myself with the assistance of the home education network. Or complaining to the Education Welfare Officer that the school is failing in its duty to provide her with an education.

Meanwhile in the (briefly) sunny UK, Little J is doing really well with her tinted glasses. She got them just before Christmas and hasn't had a migraine since, except occasionally when she goes swimming and those stop immediately when she puts her glasses back on after getting out of the pool. We are basically back to normal! We went to the migraine clinic again a couple of weeks ago and they said she could try coming off the drugs, so she reduced the dosage for a week and hasn't had any pills at all for the last week. Still no migraines
 

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Posted by Welease Woderwick (# 10424) on :
 
As there has been no action on this thread for some months can I assume that all problems are solved and everything in hunky-dory?
 

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Posted by Roseofsharon (# 9657) on :
 

quote:

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Originally posted by Welease Woderwick:
As there has been no action on this thread for some months can I assume that all problems are solved and everything in hunky-dory?

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Looking forwsrd to new problems for the family with Elder Grandson's approaching change of school, and the beginnings of puberty.
Can't be the only one!
 

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Posted by Jane R (# 331) on :
 
Little J's migraines are still being kept at bay by the magical glasses, so as far as I'm concerned you could close the thread down. I can't speak for anyone else though.
 

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Posted by Haydee (# 14734) on :
 
I'm at the beginning of the process of finding out my younger (adoptive) daughter's needs, now she's settled enough to see past the 'moving in' unsettled period. Plus as she's 5 she's moving into a more formal and less accommodating school environment (or will next year - her pre-school is wonderful). So the longer term issues are getting more visible.

It looks like sensory processing difficulties, especially vestibular. Sitting still is almost impossible for her. Plus the general developmental delay of 5 years in an impoverished (in all respects) environment and insecure attachment. I seem to be gathering more and more of a team around us, though, I've been very lucky.

Only difficulty is our local school doesn't want the hassle of a child at the bottom end of the 'mainstream' educationally, even though she has come on tremendously and with the right remedial support has every prospect of catching up over the next couple of years.
 

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Posted by Niminypiminy (# 15489) on :
 
Haydee that is outrageous that your local school don't want to be bothered with your daughter, though all too believable. Are you in the UK? If you are you might find IPSEA helpful in getting your head around the SEN maze and especially fighting for inclusion and extra support at school.

Nimlet 1 (my child with special needs) is going though a good phase at the moment -- happy at school because he is well supported, and so not acting out all his stress at home. But I am well aware that things can and probably will change at the start of next school year, or when something new developmentally happens and he has to integrate it. So for now I am just enjoying, well, enjoying him.
 

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Posted by PeteC (# 10422) on :
 
School bells are soon ringing and problems arise anew
 

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Posted by Niminypiminy (# 15489) on :
 
Yes indeedy. We are probably going to have to move the children to a different school in the middle of this year - so, in addition to all the normal problems of settling in a new school and knowing no one, there will be the extra problems of managing the transition for Nimlet1 and getting his support sorted out. Oh, how I'm looking forward to it!
 

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