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Source: (consider it) Thread: Children with special needs
Niminypiminy
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# 15489

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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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Lives of the Saints: songs by The Unequal Struggle
http://www.theunequalstruggle.com/

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Josephine

Orthodox Belle
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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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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

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Niminypiminy
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Excellent! [Smile]

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Lives of the Saints: songs by The Unequal Struggle
http://www.theunequalstruggle.com/

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Japes

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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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Blog may or may not be of any interest.

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Zacchaeus
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Mine might have grown up and left home but they still have special needs...
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Josephine

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

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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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

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Welease Woderwick

Sister Incubus Nightmare
# 10424

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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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I give thanks for unknown blessings already on their way.
Fancy a break in South India?
Accessible Homestay Guesthouse in Central Kerala, contact me for details

What part of Matt. 7:1 don't you understand?

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Niminypiminy
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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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Lives of the Saints: songs by The Unequal Struggle
http://www.theunequalstruggle.com/

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busyknitter
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I'll be happy to play. My younger son is autistic, severe end of the spectrum.
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Welease Woderwick

Sister Incubus Nightmare
# 10424

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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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I give thanks for unknown blessings already on their way.
Fancy a break in South India?
Accessible Homestay Guesthouse in Central Kerala, contact me for details

What part of Matt. 7:1 don't you understand?

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Smudgie

Ship's Barnacle
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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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Miss you, Erin.

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Curiosity killed ...

Ship's Mug
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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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Mugs - Keep the Ship afloat

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Boogie

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

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Garden. Room. Walk

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Uncle Pete

Loyaute me lie
# 10422

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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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Even more so than I was before

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comet

Snowball in Hell
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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. [Biased]

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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

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Boogie

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

Oooops - NOW grown up, not not
[Roll Eyes]

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Garden. Room. Walk

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

Oooops - NOW grown up, not not
[Roll Eyes]

Oh, I like the idea of being not grown up and doing well!

My elder son has autism/asperger syndrome. He's just - yesterday - had his ninth birthday. He's such a sweetheart and yet I've sometimes wondered how I will survive his childhood. And whether the whole family can ever not be absolutely dominated by him and his needs.

But anyway, he's also lovely, and looking at him today singing along to Thin Lizzy's greatest hits (current obsession) on his new mp3 player, my heart aches with love for him.

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Lives of the Saints: songs by The Unequal Struggle
http://www.theunequalstruggle.com/

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North East Quine

Curious beastie
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One of my godsons has autism and ADHD; I don't want to discuss him on this thread, but I will be interested to read what others post. The ADHD has a bigger negative impact on him than the autism, I think.
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birdie

fowl
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How did I miss this?

Both my kids have disabilities. My son, 7, has spina bifida , and my daughter, 4, has CHARGE syndrome , which is a rare one.

They're both on the milder end of the possible outcomes for their conditions, but life is very full of hospitals, therapies, surgery, and carrying out medical procedures at home on a daily basis which most people think only happen in hospital...

Life with them is bonkers, exhausting, terrifying and wonderful. I couldn't imagine it any other way.

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"Gentlemen, I wash my hands of this weirdness."
Captain Jack Sparrow

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Enigma

Enigma
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I guess I was once a child with special needs. My needs were met thanks to my parents, family and friends who treated me as normal even though I am not.
Now I am just me..................trying to work out which category I would be in Paralympics ---- not sporty more musical would be the one!!
For all you parents with unusual children - just treat them as usual - it worked for me anyway!

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Who knows? Only God!

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Loveheart

Blue-scarved menace
# 12249

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Both my son and I have Asperger Syndrome. He is nearly 11, and is SO excited over his birthday, he is fit to burst! I am trying to pin him down on what we are going to do, but he keeps having meltdowns at the suggestions "you are totally ruining my birthday" (things being ruined he has learned from his non-Aspie older sister). Have been firm with him, but we do need to make arrangements, so will be pinning him down later (not literally, well unless he gets too over excited).

He really really wants a Nerf gun, but I am a bit eek about this, we don't really do guns, and the thought of him let loose with one is a bit argh. Suggested other alternatives, but it has to be a nerf dart gun!

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You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty. Mahatma Gandhi

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Curiosity killed ...

Ship's Mug
# 11770

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Boys are pretty keen on guns. We had no guns as a policy at the pre-school groups I worked in, and the boys built guns out of stickle bricks, Lego and/or any other construction toys. You could "misunderstand" and provide him with a Nerf water blaster which would get cold and miserable very quickly or spud gun which fires potato pellets, which are probably less dangerous things. Or you could just give him what he wants, but ban its use inside, outside only. His friends are going to be bored of guns quite quickly so whatever happens this is going to be a short-lived phase.

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Mugs - Keep the Ship afloat

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Enigma

Enigma
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Got a friend with a son with autism. Both brilliant. When did the term dis-ability start? We all are unique!!

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Who knows? Only God!

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Loveheart

Blue-scarved menace
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Thanks. If I choose to misunderstand, it might get thrown across the room! He already has a water pistol. But I met someone on holiday, her aspie son had one, just without the darts, so that is a possibility, and less damp than one that squirts water!

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You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty. Mahatma Gandhi

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Josephine

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

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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I've written a book! Catherine's Pascha: A celebration of Easter in the Orthodox Church. It's a lovely book for children. Take a look!

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Caissa
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Our oldest sone (15) has AS and our youngest child is mildly on the Spectrum.
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Uncle Pete

Loyaute me lie
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Is anyone interested in starting up again It's not Holland? I would be willing to host, but I cannot, at this point pony up the starting fee.

If you are willing to discuss in public, that's ok too!

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Even more so than I was before

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Niminypiminy
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What is the starting up fee?

Some things are fine in public, but it might be that it would be easier to talk freely in private.

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Lives of the Saints: songs by The Unequal Struggle
http://www.theunequalstruggle.com/

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Uncle Pete

Loyaute me lie
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Not sure anymore. It's a yearly fee; might be 50 pounds, if I recall correctly. Split among 10 or so people or more, a small cost.

PM Simon for details.

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Even more so than I was before

Posts: 20466 | From: No longer where I was | Registered: Sep 2005  |  IP: Logged
Curiosity killed ...

Ship's Mug
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It's here - up to 25 members, £65 / $100, 25-50 members £95 / $150 and etc.

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Mugs - Keep the Ship afloat

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Uncle Pete

Loyaute me lie
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And if you are oversubscribed, the money may be put forward for the next year. But someone has to contact Simon for permission - these are his Boards, after all.

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Even more so than I was before

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Enigma

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

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.

Yes I agree J completely -- all of that. But still usual for them. I think sometimes it's harder for the parents. But I'm not one so .....

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Who knows? Only God!

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Qestia

Marshwiggle
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My oldest (just 7) was just diagnosed with ADHD. He's been in speech and occupational therapy for years. 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 when we were not doing a lot of the therapies that happen only during the school year. Hopefully this fall will show improvement, as we add all those back in (plus karate), as I'm hesitant to medicate a 7 year old developing brain, it's very exhausting being his parent and not letting his issues overwhelm the rest of the family (he has a little sister). In short I'd love to join the group.

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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.

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Niminypiminy
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Excellent!

What do people think about bringing back the It's not Holland private board? If you would like to (and/or would/could contribute to the fee) could you PM me ?

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Lives of the Saints: songs by The Unequal Struggle
http://www.theunequalstruggle.com/

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Josephine

Orthodox Belle
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quote:
Originally posted by 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

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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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  |  IP: Logged
Smudgie

Ship's Barnacle
# 2716

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On the subject of the private board, I joined initially but, as I sort of expected, I hardly looked at it. Between my mail and FB and the Ship and the Wibsite (must get back into reading that more often), I have enough pages to keep my interest and know that I won't look at anything else, especially as my interest in the subject it not at the forefront of my mind. So personally I would rather discussion were on the public board, even though it might reduce my ability to speak openly.

But that's just me... and my need for a place to discuss the more personal side of parenting is not great.

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Miss you, Erin.

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Qestia

Marshwiggle
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Thanks, Josephine-- I'll check out both of those. I'm agnostic on the private board-- maybe we should just see how it goes with this thread first.

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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.

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

I'm another parent with AS (Asperger's syndrome). None of my children have AS, although one has inherited my difficulties with sound sensitivity. I grew up before AS was recognised and I wasn't diagnosed until middle aged. In fact, the Ship played a role in that.

Reading some of the posts here reminds me of how, as a child, I would be fixated on a particular gift or activity for my birthday, and would end up in tears (meltdown) if it didn't happen. As my parents are no longer alive, I cannot ask them how "bad" it was from their perspective.

But there was no "special ed" back then. Unless something extreme happened, you just struggled on. I was depressed and anxious during high school, but no one picked it up. I really hope that nowadays people are much more aware of teenagers with AS. I needed intervention of some kind, but didn't get it until my twenties, when I was floundering at university.

So even "mild" cases - someone with AS who goes on to have a career and marriage - may need a significant amount of help during their teens and twenties. I am really grateful for the help I did receive.

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MSHB: Member of the Shire Hobbit Brigade

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Niminypiminy
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# 15489

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quote:
Originally posted by Josephine:
quote:
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

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.

I also have an oppositional and defiant child. I haven't got The Explosive Child (it was on my list and then I forgot about it, so thank you to Josephine for reminding me!). We have been working on compromise this summer (helping my son to see that we can both have bit, though not all of what we want). It's slow progress, but when he is calm he is now more open to the idea of 'doing a deal' (I say to him, 'I'll do a deal with you, man cub'), in which we trade things we want.

It's really, really slow work teaching those missing skills. And we still get into terrible scenes where he is backed into a corner and refuses to give up on what he wants -- even if it would be unpleasant or dangerous for him. Sometimes the only way through it is to agree ('OK, nimlet1, you use the razor-edged cleaver to cut yourself a piece of cheese'), because then he will back down. But that's quite a hairy strategy, and in the long term, he needs to be able to get out of the corner. I can't see police, for example, being willing to say something like this.

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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  |  IP: Logged
Niminypiminy
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# 15489

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(excuse double post -- but this is a different topic)

It seems like there isn't a great enthusiasm at the moment for reviving the It's not Holland private board. But let's not rule it out for ever -- there may be a time when it wants or needs to come back.

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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  |  IP: Logged
Loveheart

Blue-scarved menace
# 12249

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For those of us in the UK, can I just say how helpful I've found the organisation SIBS, for helping siblings? They've given me lots of useful advice, and are helping me to help support my lovely daughter who gets a bit left out sometimes.

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You must not lose faith in humanity. Humanity is an ocean; if a few drops of the ocean are dirty, the ocean does not become dirty. Mahatma Gandhi

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Ruudy
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Hit the wrong button and stumbled into SoF by accident after 4 years of ship leave. So pleased and comforted to see everyone still here. Especially you folks from This is not Holland.

My reading list for special needs kids is growing. My mother recommended The Explosive Child because it has helped my sister in her dealings with my 8-yo Nephew who is very explosive and has been diagnosed with OCD and has some Tourrette's symptoms.

Suusan and I are now reading The Out of Sync Child while we seek diagnosis for our our third child.

She and I have four boys ages 3yo Quatro, 4yo Tigger, 5yo Floppy Headed Night Owl, & 7yo Señor Frog. Lately our main parenting concern is getting 4-yo Tigger diagnosed properly. We have known for ages that something is off. Especially on the gross motor skill front. Quatro is 18 months younger than Tigger and usually learns new physical skills far before Tigger (turning door knobs, jumping, holding a pen, eating neatly, personal toilet hygeine, carrying his plate etc). He is four and all these things are still very challenging for him. We never had to teach any of the other kids how to open a door, how to put on socks, how to pull up your underwear. They just did it. With Tigger we have to go over these things and practice over and over and over again. And at 4 he still can't do them with ease or consistently without help.

Two years ago we took Tigger for an evaluation but were told there was no diagnosis because at that time cognitively Tigger was bright but just barely in time to qualify for normal range on gross and fine motor skills. I wondered if the "in-system" health care providers are there to keep you from getting your insurance companies' money. We then did a year of out-of-pocket OT which seemed to help at first before plateauing.

Every so often our hopes are lifted. Tigger is the most patient and persistent kid I have met. He does not give up. He loves baseball and at three would go outside on the patio and watch his body trying to throw a ball in the reflection of the sliding glass door. He is trying to imitate the motion of a pitchers fully wind up. Eventually he got to where he could throw a ball - but he HAS to do a full pitcher's wind up now to accomplish it with any success. Oddity of oddities, he has taught himself to ride a bike. Our 5 yo Night Owl accomplished this first even before the 6 yo. So Santa delivered a no-pedal balance push bike for the family. 6 yo will not do anything he cannot shine at, so the balance bike sat unused for two weeks. Tigger decided to pick it up. Outside he went where he fell over and over and over again. Eventually he learned to ride a pedal bicycle before 6yo Señor Frog.

This fall Tigger started pre-K and within a week we had a call from the teacher asking us about Tigger. He doesn't understand where his body stops and the world begins. Patting a classmate on the back is a real effort and he cannot properly guage his strength so he unintentionally causes pain, or pokes someone in the eye. The teacher supportively suggested another evaluation by a professional that works with the school frequently. We are so pleased to here a teacher tell us we are not crazy and that this needs to be addressed.

I am worried and distraught by the fact that at home we have always accepted and worked with him as he is. We have been patiently pushing him and he is persistent. But last week he bit another child and I am worried that his innocence and cheerful demeanor will be destroyed by the social anxieties he may face. It is really upsetting me.

Any suggestions or links you have on navigating the diagnosis and treatment plan phase would be appreciate. I believe he has some form of sensory integration disorder or mild cerebral palsy, but we'd now really like to get to the bottom of this.

Oh, MSHB, if you wouldn't mind sharing here or in a PM how you went about Asperger's diagnosis as an adult, I would appreciate it, as I have been meaning for years to look into this for myself - but I can't seem to make it in for routine physical.

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The shipmate formerly known as Goar.

Posts: 1360 | From: Gatorland | Registered: Jan 2003  |  IP: Logged
Doublethink.
Ship's Foolwise Unperson
# 1984

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Dyspraxia perhaps ?

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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

Posts: 19219 | From: Erehwon | Registered: Aug 2005  |  IP: Logged
Curiosity killed ...

Ship's Mug
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That sounds fairly bad dyspraxia as that one goes. I managed to control my daughter's dyspraxia (paediatrican diagnosed, honest guv) by taking her to toddler gym and on up until she was 8 or 9. I was told that I'd pretty much provided the therapy that the paediatrician would have done. She was never going to be that brilliant a gymnast but she did end up "passing as normal" for co-ordination.

Have you done eye tests? Check he can actually see and judge distances? Start with the simple.

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Mugs - Keep the Ship afloat

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Ruudy
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Thanks for your thoughts.

I read the link you sent and yes dyspraxia is spot on. We had heard of dyspraxia last round of battle and had thought he'd be diagnosed but instead were told that he was "at the low range of normal". It is interesting that it has comorbidity with other traits I suspect our family exhibits.

It's at times like this I wish we still lived in London rather than the land of gators. I think the healthcare system there is much better for someone in Tigger's shoes - more likely to straightforwardly diagnose. Maybe I am just suffering from a case of "the grass is greener" syndrome. - BUT THIS IS NOT HOLLAND.

We have taken him to a developmental opthamologist who gave him the all clear on that front. Navigating steps was delayed and is now still awkward so we worried about depth perception.

So far we have had to wing it. Hopefully this go round the developmental psychologist evaluating him last week and this week will be able to provide a diagnosis or refer us to someone who can give us a diagnosis and a treatment plan. Otherwise I will be back here grateful to have a place to vent.

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The shipmate formerly known as Goar.

Posts: 1360 | From: Gatorland | Registered: Jan 2003  |  IP: Logged
Curiosity killed ...

Ship's Mug
# 11770

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I've seen that lack of depth perception in nystagmus - what is he like with construction toys?

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Mugs - Keep the Ship afloat

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Doublethink.
Ship's Foolwise Unperson
# 1984

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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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All political thinking for years past has been vitiated in the same way. People can foresee the future only when it coincides with their own wishes, and the most grossly obvious facts can be ignored when they are unwelcome. George Orwell

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Ruudy
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# 3939

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One of his brothers is a lego nut, but I've never really seen Tigger play with them. I asked Suusan and she says he doesn't ever play with them if there's another option (and there almost always is).

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The shipmate formerly known as Goar.

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Ruudy
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# 3939

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Also, on the Nerf Gun discussion. We have them but we have an "only aim at targets" rule where "people are NOT targets". This rule is flagrantly violated.

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The shipmate formerly known as Goar.

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Ruudy
Shipmate
# 3939

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quote:
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.

Very good to know.

Oh, and why the question about construction toys? I assumed you meant building blocks and such rather than Tonka trucks.

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The shipmate formerly known as Goar.

Posts: 1360 | From: Gatorland | Registered: Jan 2003  |  IP: Logged



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