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Why do people get angry at the suggestion that special needs can be cured?

(93 Posts)

MNHQ have commented on this thread.

Palika Tue 10-Dec-13 16:42:22

I have always found it puzzling that so many people get angry if someone suggests that special needs can get cured.

There is ample evidence that 50% of ADHD get cured and 30% of aspergers. (google the research)

Does it make you angry? Why?
Is there anything that can be gained through believing it can't be cured?

I personally would jump with joy.

Weegiemum Tue 10-Dec-13 16:43:57

Because most can't.

ouryve Tue 10-Dec-13 16:49:23

If you're so het up about this, then how about you google the research and share it with us? hmm

Bluebirdonmyshoulder Tue 10-Dec-13 17:03:20

What exactly is the point of your post?

My DD's condition cannot be cured and if anyone suggested to me that it could be, I would assume that they felt my parenting was awful and if I just 'tried harder' then all would be well.

Just so you know, that would make me very angry.

ouryve Tue 10-Dec-13 17:05:08

Perhaps we should use the naughty step more, Bluebird.

We'll never know until the OP comes back and tells us what those magic cures are, though.

Bluebirdonmyshoulder Tue 10-Dec-13 17:07:46

Bugger, it IS my fault! I've never used the naughty step.

Waiting with barely concealed irritation......

madeupstuff Tue 10-Dec-13 17:09:24

'Cure' implies 'wrong', whereas what we have in many cases is 'different' and a cure implies that you want that to change - that we should all be the same.

tallulah Tue 10-Dec-13 17:13:39

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

ScramblyEgg Tue 10-Dec-13 17:28:58

Message deleted by Mumsnet for breaking our Talk Guidelines. Replies may also be deleted.

BeeMom Tue 10-Dec-13 17:59:57

We knew one child whose condition was very similar to Bee's - quite possibly the only 2 in our province, maybe in the country.

Her parents were adamant that there WAS a treatment and ultimately a cure for her - traveled all over the continent and subjected her to innumerable tests, procedures, surgeries and experimental drugs to chase the elusive cure.

She died on May 24th 2012, one week before her 6th birthday.

I doubt that was the cure they were seeking.

Palika Tue 10-Dec-13 18:04:12

Why I have posted here? Quite simply because I am looking for a place to discuss helping my own SN child.

I was on several forums to discuss this and was always met with the same kind of anger as you seem to have as well and I just could not understand it confused It's the last thing on my mind to annoy anybody.

I am glad, however, that at least I do understand now a little bit better where all this anger comes from.

But just to be clear, I will not take any abuse from you, ladies. I will report anybody who throws swear words and insults at me and have already reported tallulah.

Greensleeves Tue 10-Dec-13 18:07:28

Because it's bollocks. You can't cure ASD. It is part of the person. It's slightly insulting to talk about what is essentially my child's personality in terms of curing him. And at worst you are fucking with the emotions of people who may be struggling with a diagnosis and actually believe you, which is cruel and irresponsible.

hth

Palika Tue 10-Dec-13 18:10:08

reported you as well, Greensleeves

Greensleeves Tue 10-Dec-13 18:12:09

biscuit

SilverApples Tue 10-Dec-13 18:13:55

I have an 18 year old Aspie. He isn't 'cured' his condition is hardwired into his brain and is the filter through which he perceives the world.
What he has developed over the years, with support, are strategies, knowledge and a veneer of socially acceptable behaviour. It is now quite a thick veneer, and someone like you might not even guess that he has a diagnosis or was on the spectrum.
Unless there are triggers, and stresses and he overloads. Then the veneer is stripped away in a heartbeat.
You need to find other fora that support your approach, try something like 'Autism Speaks' or other American sites if you want to be amongst like-minded individuals looking for a cure.

Bluebirdonmyshoulder Tue 10-Dec-13 18:20:57

No one is abusing you or directing any swear words at you.

We vehemently disagree with you, find your premise offensive and have questioned your motivation for posting.

It is utterly fair to say that the theory that some conditions can be cured is 'bollocks'.

I don't in all honesty think this is the right board for you.

JulieJingleBellsMumsnet (MNHQ) Tue 10-Dec-13 18:22:26

Evening.

Many thanks to those who have been in touch about this thread.

Now would be a good time for us to say that we do have a campaign aimed at dispelling the myths surrounding special needs, it's called This is my child

You can find the common myths here

We understand that this is an emotive topic, but it's worth while taking a look.

FanjoForTheMammaries Tue 10-Dec-13 18:24:02

Because if you say its curable then if our kids still have it we must have failed.

FanjoForTheMammaries Tue 10-Dec-13 18:24:50

In your eyes

SilverApples Tue 10-Dec-13 18:25:31

So is this thread by the OP from several months ago. I don't think she's trying to be mischievous, I think she's looking for a tick list to cure her DS.
www.mumsnet.com/Talk/teenagers/a1788232-Do-I-have-too-high-expectations#39909238

FanjoForTheMammaries Tue 10-Dec-13 18:30:44

IMO aiming for a cure is just an extreme form if denial

FanjoForTheMammaries Tue 10-Dec-13 18:31:24

*of

ArtisanLentilWeaver Tue 10-Dec-13 18:33:38

Palika, I am not angry just very, very tired.
My dd was born with her special needs and I am realistic there is no cure. We love her as she is and I would not wish for anything more.

I wish there was a cure for people who were rude to her or hurt her but there is no cure for that either. Just an awful lot of love and reassurance from a family who are torn about helping her be independent and yet trying to keep her safe.

SilverApples Tue 10-Dec-13 18:36:22

'Why I have posted here? Quite simply because I am looking for a place to discuss helping my own SN child.'

So, your child is 14, or perhaps 15 by now. He's got a recent dx of dyspraxia, and you self-diagnosed him with ADHD.
You struggle in your relationship with him, and there are several issues that need resolution between you, some of which may be linked to his SN, some to your disappointment in not having the son you expected to have, and you seem to want to 'fix' him so that he becomes someone you are proud of and who will achieve your ambitions for him.
So you are looking for a cure, for what? His dyspraxia? His possible ADHD?
Or his being a teenage boy?

ShirakawaKaede Tue 10-Dec-13 18:47:38

"There is ample evidence that 50% of ADHD get cured and 30% of aspergers. (google the research)" - What research is this? There is a lot of research on these subjects - googling them is unlikely to come up the very paper (which I'm already extremely suspicious of) from which you quote these percentages.

I'm not aware of any (reputable) research which supports the idea that either of these SN are curable, although it is true that people can learn to cope better and make good progress with the right support (I have DS with Asperger's).

ShirakawaKaede Tue 10-Dec-13 18:48:34

Bugger, DS=son... I meant Dsister.

ZombiePenguin Tue 10-Dec-13 18:49:26

Because if you say its curable then if our kids still have it we must have failed.

Loads lf things are curable (the thing my DD died of, for example). I don't think anyone has ever thought just because it is curable means it is always cured iyswim, althoigh I understand your point I disagree.

(I should add, I disagree with saying it- most SN is hard wired into the brain, like with my youngest DC. Her SN is a part of her. Always will be. I DO believe that possibly with more developments in genetic research and more advancements made into understanding the original causes of SN, usually a chance mutation or chance alone, might mean more SN could be prevented -nb, not children, but the thing which causes them to have a disability- or to be known earlier and therefore have support earlier, in the case of DD2, this would have benefited us a lot).

SilverApples Tue 10-Dec-13 19:13:30

'There is ample evidence that 50% of ADHD get cured'

Can we be more precise about this please? Are you meaning certain treatments and lifestyle approaches that have to be maintained in order to manage the syndrome? Diet for example? or the 'Let them run wild and free in the country' approach?
A cure is different to managing the condition. My Dad has diabetes, which is managed through medication and diet. He isn't cured, because if I removed that support, he'd die.
If you have a cure, then you don't need to do anything after you've 'fixed' the problem. It's cured. If you still need to chant or massage or eat special food, then yoy are managing the condition.

autumnsmum Tue 10-Dec-13 19:15:19

You have mentioned ADHD and aspergers they are not curable and sadly there are many conditions which are severe and life limiting which are also not curable although we all wish desperately they were

PolterGoose Tue 10-Dec-13 19:19:42

Palika your posts made me laugh, so thank you for cheering me up on a crap day grin

ouryve Tue 10-Dec-13 19:22:33

Palika, I've now read a few of your posts from the thread linked and some of your other posts on the teenage board.

Your OP did come across quite aggressively and given that so many of us, particularly those of us who parent DC with ASD and/or ADHD have heard so many comments about making a child do things or being firmer with them. I had someone (another parents of a child with ASD) dare to tell me that I was poisoning DS1 by giving him food with gluten in, all because of the say so of a certain famous American TV personality whose DS may or may not actually have ASD and may or may not be "recovered" depending on which reports you read. I'm sure you can understand why the hackles go up.

I have one reading recommendation for you, based on what I've seen - The Explosive Child by Ross Greene. The approach isn't just intended for children who are prone to temper outbursts. It's helpful with all sorts of behaviours and it helps you to understand why the child does it and them to understand why you have a problem with them doing it. Quite often, a child is behaving in a certain way because it meets a need for them or because something triggers a behaviour pattern that they feel out of control of - which is often the case where neurologically based SN are concerned.

There's an outline of his approach here:
www.livesinthebalance.org/sites/default/files/CPSOnePager.pdf

zzzzz Tue 10-Dec-13 20:01:38

Dd3 has epilepsy, the only long term no drug "cure" for her is partial lobotomy, but there's the little matter of not knowing how her personality/intellect/self would survive and that they don't actually know which bit to snip out. The drug alternative causes among other delightful side effect in my beautiful 6 year old, depression, selective mute, pins and needles, an inability to sweat, anorexia, difficulty learning new skills, anxiety and pain. So excuse me if I don't agree that all sn can be cured.

Ds1 on the other hand has a language disorder of monumental proportions. What do you suggest I do? I know why don't I talk to him a bit more? hmm angry

And my child who is colour blind? Seriously how shall we cure that?

Wake up Palika your Op is unbeleivabley offensive and obtuse.

MrsDeVere Tue 10-Dec-13 20:12:50

Your OP begs the question...
why haven't you cured your child yet?

When you have, come back.

And don't lay down the law. You are not in charge of how we speak or what we say.

JadedAngel Tue 10-Dec-13 20:28:26

When you have a child with SN, you hope they will develop as well as they can but to dare to hope your child may one day be minus their SN can be an emotional leap too far because you have to, first and foremost, emotionally equip yourself to deal with the situation as it is now.

One of the hardest things about having a child with SN is coping with the reactions and perceptions of others. If others perceive that SN can be cured and isn't permanent, it negates the potential severity of the situation and brings your skills as a parent and carer into question, quite unjustifiably.

But what I object to most about your post (and this is a common MN issue) is the narrow minded view that SN = autism/aspergers/adhd. Really, there are so many of us dealing with SN way outside of this spectrum (genetic syndromes, metabolic syndromes, leukodystrophies, CDGs, types of cerebral palsy and brain damage to name a few).

And you know of course it's a very rare parent who doesn't want to help their child with SN be the best they can be, but to suggest they can be cured is just naive.

As a parent I am trying everything to enable my son to reach his full potential. The painstaking hours, days, months and weeks of therapy (both conventional and otherwise), dietary modifications, hours and hours of research, taking him to see various specialists etc etc but there is no known cure for his condition. Hell, they can't even diagnose what's causing his severe life threatening epilepsy, hypotonia and brain underdevelopment which means that at nearly 3 he can neither walk not talk. Nor can he swallow properly, chew, or understand how to play with toys.

But you know, I'll be sure to remember not to get angry next time some smart arse comes along and says, 'hey, SN can be cured you know, what are you waiting around for?' hmm

tallulah Tue 10-Dec-13 20:45:56

Link to research then?

5HundredUsernamesLater Tue 10-Dec-13 20:49:02

Well said Jadedangel.
You've just saved me the job of typing out my thoughts on this idiotic suggestion.
My child has Cerebral Palsy, and would love palika to find us a cure.
I also work in special education and would happily take redundancy if all the wonderful children in my care suddenly found a cure and didn't need me anymore. If only!

Honestly? Why do people get angry??

Probably because some people would love their child not struggle in ways they do.

Probably because some people would love to not have to fight to help their child.

Probably because they'd do anything to make things 'better'.

Probably because they accepted the situation a long time ago and ignorant comments like "it can be cured" are quite frankly insulting on so many levels.

Probably more aswell.

ScramblyEgg Tue 10-Dec-13 21:39:15

Come on OP, where's the research you mention?

(Can I ask that without getting deleted this time, I wonder?)

hazeyjane Tue 10-Dec-13 21:52:17

I was about to type most of what JadedAngel just has.

Your op is very naive and insulting.

JadedAngel Tue 10-Dec-13 21:55:18

hello hazey smile

<starfishindisguise>

Debs75 Tue 10-Dec-13 21:56:25

OP obviously doesn't care what we all think seen as she has buggered off without providing any back up to her wild claims.

But in answer to her Q. DS has ASD which is a life long disability. His asd is severe and impacts on every part of his life.
It would be wonderful if he could communicate better but despite loads of different interventions he still struggles with communication. If he could communicate he would be an autistic adult who could communicate
He has no understanding of danger whatsoever. This seriously needs to be addressed but even if it is he won't be cured of autism he will be an autistic adult who has an understanding of danger.
He is incontinent, if he wasn't he would still be...... an autistic adult who was continent

You are very naïve in how you asked this question and I think you wanted people to get angry at you as you are messing with their emotions.

Debs75 Tue 10-Dec-13 21:58:48

So at the risk of being deleted.

Fuck the fuck off and fuck off some more.

Let us mums of SN children cope the way we do and live with our children the way we do. Do not talk to us condescendingly because we can face up to reality and accept our children can not be 'cured' of what makes them what they are.

We love and accept all our children whether they be SN or NT

NotAnotherStuffedTurkey Tue 10-Dec-13 22:02:10

Thank you so much Palika
Neither I nor all the consultants my DS sees had any idea a cure was ours for the asking.
Can you pop up a link to this fabulous research we have all somehow overlooked and you'll make me a very happy lady. hmm

NotAnotherStuffedTurkey Tue 10-Dec-13 22:03:18

Alternatively what Debs75 say with bells on.

zzzzz Tue 10-Dec-13 22:07:58

Actually I agree with debs fuck off.

hazeyjane Tue 10-Dec-13 22:14:42

<adds another set of bells to that fuck off>

hazeyjane Tue 10-Dec-13 22:15:17

<ooh and waves at Jadedsmile!>

I think we are being too harsh. This OP has a DS who was DXed with dyspraxia. She feels she has 'cured' the physical symptoms but maybe hasn't recognised that lack of motivation, organisational issues and social deficits could still be underlying. Her posts, especially on the linked thread, seem lacking in empathy for her DS and for other posters points of views. Sound familiar?

Yes, she's an adult but I would hope that my DS's interactions with others on a SN forum would be met with more tolerance when he's older.

ouryve Tue 10-Dec-13 22:37:31

This is why I linked her to Ross Greene, EllenJane. It would be rather un-MN to say exactly what I thought of some of her other posts, but, safe to say, her approach is not working, much as she wants to believe it is and she tries to find something that isn't centred about her simply punishing him or expecting him to work out how to behave appropriately for himself. I, sadly, suspect that her confrontational approach to us here is typical of her daily interactions with her DS. If she wants their quality of life to improve, then she needs to change that.

MrsDeVere Tue 10-Dec-13 22:40:30

No.
My son has a great deal of empathy and interest in other people and their views/experiences.
Can we not get back on this 'people with ASD can't empathise' tip please.

If my DS was as rude as the OP I would explain to him he pretty much deserved any pasting he got.

coppertop Tue 10-Dec-13 22:59:34

I've just read the other thread.

You're saying that you cured your ds of ADHD, even though he was never actually diagnosed with it?

And that you cured his dyspraxia, even though he still seems to have the lack of organisational skills etc that are a part of dyspraxia?

I'm not angry. Just confused.

zzzzz Tue 10-Dec-13 23:04:23

Are we diagnosing OP with ASD based on her son having dyspraxia and her being un-empathetic? confused

My ds would never continue if people told him they were hurt.

ouryve Tue 10-Dec-13 23:05:09

MrsDV - one of my stock phrases with DS1, lately, is "people will get cross with you for this" grin

childrendriveumad Tue 10-Dec-13 23:12:55

not angry, bemused............

but shove off Palika if you're going to wander in and post inflammatory comments and then not even have the common courtesy to respond to people's comments in reply to your OP

My DS has little empathy, Mrs DV. Luckily it's softened with a great sense of humour! grin

I could have said that the OP's tone may have been due to English being her second language but that may have come across wrongly. My good friend is German, she is particularly blunt and forthright.

I don't want to stereotype everyone, though. wink

Yes, the OP hasn't come across very well, but there is a sense of desperation, there, isn't there?

childrendriveumad Tue 10-Dec-13 23:13:42

ouryve - that one gets used here a lot too smile

AllIWantForChristmaaaasIsEWE Tue 10-Dec-13 23:15:44

Do you have a link to the thing about 30% of people with Aspergers being cured please? Is this a study done in the UK? I don't understand why you would post something like that as fact without any evidence.

Anyway. When my dd was diagnosed with HFA i was completely clueless about it all. I actually asked the pediatrician "is this for life? Does autism ever go away?"

She replied that some people with ASD move higher and higher up the spectrum throughout their lives until they eventually fall right off it, meaning they no longer present enough of the characteristics associated with ASD to warrant a diagnosis. However, it could be that the person has just learnt to control themselves better, or hide their 'autistic traits'. Internally, they may still be facing the same battles, but are choosing to pretend otherwise.

The whole thing left me completely puzzled tbh. I still don't understand if someone can 'stop having autism' or simply learn to hide it.

For example, my dd had learn not to shout and scream at school. To the majority of the people there, she seems NT. But then when she comes homes, she releases all that pent up energy.

So what happens when she decided to stop releasing that energy at home too? What happens if she decided to keep it to herself, and pretend she's okay? What happens if she starts pretending to 'fit in' with the other children (apparently its common for girls with ASD to do this?) so as not to draw attention to the fact she hates socialising/interacting?

She could effectively teach herself to appear NT. She could keep all of her ASD-related thoughts and feelings to herself. But she'd still have HFA. But to other people, she'd appear like any other NT girl.

I'm rambling now. Confusing myself.

To sum up - I don't believe there's a cure. I do believe people can find coping strategies and teach themselves to be controlled and calm and socialise etc.

AmberLeaf Tue 10-Dec-13 23:20:02

IMO aiming for a cure is just an extreme form of denial

I pretty much agree with that.

Just read the other thread, as disturbing a read now as it was back in june.

zzzzz Tue 10-Dec-13 23:22:22

What does "higher up the spectrum" even mean? The high and low in HFA or LFA refer to IQ not severity of symptoms. The spectrum is the profile of deficits (ie more OCDish less Communication issue or whatever).

What on earth can this Dr have meant?

AllIWantForChristmaaaasIsEWE Tue 10-Dec-13 23:33:16

Have absolutely no idea zzzz. The whole day was and still is a blur to me. I wish I'd asked her to clarify at the time.

But that's what she she said. She said that i could always have my dd reassessed as a teen/young adult, as it may transpire that she no longer meets the diagnosis requirements for ASD.

This diagnosis day was after 18mo of intensive observations and reports. And then i was told i could always have her reassessed? What for?

Left me totally boggled.

zzzzz Tue 10-Dec-13 23:37:43

Perhaps she suffered from brain/mouth disconnect? How totally annoying.

Dare you to write to her and ask for clarification. grin

More seriously though I find it just awful how much MORE stress can be added to an already upsetting situation by people not explaining themselves. Poor you.

AllIWantForChristmaaaasIsEWE Tue 10-Dec-13 23:38:17

Which is my worry.

Say i took my dd as a teen to be 'reassessed'.

Say DD has learnt by this time excellent coping strategies, scripts that help her 'fit in' with other children. She knows she is different, inside she is wriggling with discomfort at having to engage and interact with her classmates, but she hides it until she is completely alone.

She could teach herself to hide her autistic traits. And this is something the pediatrician also said. That girls on the spectrum tend to try harder to fit in/pretend to be interested in other people so as not to draw attention to themselves etc.

So i could take my dd back there as a 16 yo to be reassessed and get told, "Oh, she no longer has autism. Cheerio!" all because my dd has learnt to hide her true self?

So she could still very much have HFA, but be told she hasn't?

It's all just so confusing.

zzzzz Tue 10-Dec-13 23:42:16

I think she would be unlikely to be able to hide it during a thorough assessment. I suspect that level of self control would lead to serious MH problems.

BeeMom Wed 11-Dec-13 00:00:34

zzzzz it sure does.

I spent early years caring for a boy whose parents decided they were going to make him "normal" (their words, not mine, it still makes me bristle). He spent about 20 hours a week in my home between the ages of 4-8, at which time his parents decided he needed to be "fixed".

He then spent 40 hours a week, outside of his regular school day, in intensive therapies, until he had been sufficiently trained to appear NT both in public and at home.

This had widespread and lasting effects.

By the time he was 16, he had severe OCD and other mental health issues, would not leave the house and would not allow his parents to leave except for work, would not allow anyone to visit, was severely malnourished due to food refusal and prone to violent outbursts and psychotic episodes.

In their quest to make him "normal", they had pushed him to excel in martial arts, too...

Unfortunately, he no longer was able to master the "discipline" and "control" portion of his martial arts training, and his violent outbursts were very dangerous.

Sadly, his story has ended now - at 18, he took his own life.

Strongecoffeeismydrug Wed 11-Dec-13 08:35:43

OP let me be the first to offer you my sonwink.
Probably a month will be long enough then you can send him back to me all curedgrin.
Ps don't worry about Xmas pressies he doesn't like them, and don't mention the new year as he wants to keep the old one, and sprouts well good look with thatwink.

ouryve Wed 11-Dec-13 13:26:51

I notice the OP never came back here. We didn't tell her what she wanted to hear.

And I'm guessing that one of the things she wanted us to read was that book, stopping ADHD. Well, sorry, Palika, you may have helped your DS become less hyperactive. That's because the book probably did address a lot of the sensory processing issues behind his hyperactivity (and dyspraxia). What it hasn't done is cure the inattentive part of what may or may not be ADHD (I'm no more qualified to diagnose than you are). People with inattentive type ADHD do appear to be lazy and disorganised and tuned out. And immature. In children with ADHD, the areas of the brain responsible for regulating sensory input and impulse control are underdeveloped - immature.

Bluebirdonmyshoulder Wed 11-Dec-13 15:51:35

The OP's other thread about her son makes for very depressing reading. sad

MrsDeVere Wed 11-Dec-13 16:07:10

allIwant
DS was reassessed yesterday.
I was fully expecting them to tell me 'what the hell are you on about? Who told you he was autistic you neurotic loon?!' (or similar).

Of course they didn't. He is still autistic and now he is 'complex'

I think we get so much stick as parents, being told 'not to worry' and 'they are fine' pre diagnosis that we will always doubt ourselves.

Of course my DS is flipping autistic! It seems daft now but I was concerned about him losing his dx and being chucked out of SNS confused

Instead they agree that he should be moved to a specialised school.

They also now a lot more about star wars and Dr Who than they did before they met him grin

Greensleeves Wed 11-Dec-13 16:14:25

strongcoffee your post really tickled me, your ds sounds v v similar to mine, especially "don't mention the new year as he wants to keep the old one" grin

Mrs DV do you think all parents feel that doubt about their dc's ASD dx? I do, but I thought it was just me being a prat. I frequently think if ds was assessed again now maybe they would say "no, actually he's fine but you're not parenting him properly, that's why he's XYZ". but then he is pretty textbook AS too in some ways confused and then I think "how would I actually feel if they did take away his dx and then I feel really confused

OddFodd Wed 11-Dec-13 17:03:59

I never feel like that - all I need to do is read one of his reports from school! When they first flagged problems though, I took him to Disneyland Paris a few days' later. He kept mouthing all the metal bars when we were waiting in the queues. I spent quite a lot of time thinking 'how could I not have noticed' grin

SilverApples Wed 11-Dec-13 17:36:17

You know the theory of the 5 stages of grief that a person moves through?
It's been around for a long time:

Denial

Anger

Bargaining

Depression

Acceptance

I think that the OP has moved through denial and anger of her son's behaviours and attitudes, and her resentment that he isn't matching her standards. I think she's now in the bargaining phase, where if she does this and that and wishes really hard, he'll be fixed.
If his additional needs are less severe, this may work as a self-deception.
Otherwise, when it all goes pear-shaped, she and he will hit the 4th stage.
Let's hope they all make it through intact.

MrsDeVere Wed 11-Dec-13 18:25:11

I think a lot of us do Greensleeves
DS wasn't dx till he was 7.
The children I work with are dx much younger.
Their parents tend towards the 'nothing wrong with him/her' even if the child is displaying really classic signs.
Of course there are others who crack on very early and seek a dx.

Interestingly the reaction is very similar from both types when the dx comes through. Expecting it or not, the shock and grief is often still there.

I went to a group for parents of children who were dx in primary and later.
We seemed a very unsure bunch. All of us had been told for so long that nothing much was up, we couldn't quite believe that our instincts had been right all along.

It knocks your confidence.

Odd when I look back on DS's habit of stroking the legs of ladies who wore tights.....how did I not know!

OddFodd Wed 11-Dec-13 18:53:49

MrsDV - Ah yes, ladies with tights on. Teachers during circle time are at great risk. He's only 6 so it's not too embarrassingly inappropriate just yet - we're working on it ...

SilverApples - those grief stages are bang on although I think it's not necessarily linear - I know that I've cycled through them a few times

ouryve Wed 11-Dec-13 20:12:54

No room for doubt here, Greensleeves! There was before DS1 was first diagnosed, though. No doubts at all, once it was delivered, though, like MrsDV's DS, he's now officially "complex"

uggerthebugger Wed 11-Dec-13 20:20:37

Why do people get angry at the suggestion that special needs can be cured?

Depends who's suggesting it, and why.

If it's a parent of an NT child suggesting it to make herself feel better about how my DS is presenting himself, then I get mildly annoyed with them.

If it's an evangelical Christian trying to convince me that Jesus will cure my child through the power of prayer or magic beans, then I can't stop laughing at them.

If it's a parent of a child with permanent, manageable SN suggesting that a cure's out there, simply to anchor some hope in her life, then I feel sad for them.

If it's a medical or educational professional trying to convince a vulnerable person that their intervention will cure the child, then I get angry with them. Honey badger with PMT angry. Because they are knocking away the foundations of a life that learns to meet, come to terms with, manage and - wherever possible - overcome the limitations that disability can bring.

But I reckon that when I do feel angry about the 'cure my child' stuff, it's when the people who do it are in positions of authority. History doesn't offer much comfort here - because what people in authority consider to be a "cure" varies hugely from period to period.

It's not that long ago that people in power legally "cured" many of the things we help our children with in a very different way. ECT, lobotomies, forced sterilisation, denial of modes of communication, internment, and even the ultimate "cure".

Greensleeves Wed 11-Dec-13 20:29:56

ds1 was 6 when he was diagnosed, and it was 6 years of me knowing something was up (I mentioned ASD when he was still a tiny baby, no eye contact etc) and other people scoffing at me, so I think that does add to the self-doubt now. That and the fact that we seem to alternate between teachers who get it and teachers who think he can't have a SEN because he's academically capable and I must be a shit mother with a spoilt child.

I think this snake oil stuff is much crueller to people whose kids have severe disabilities than it is to me though. I just feel pissed off and mildly insulted that someone thinks my ds needs "curing" and generally outraged that people are lying and spreading bullshit.

PolterGoose Wed 11-Dec-13 21:45:05

Fantastic post Ugger flowers

Greensleeves mine was dx at 6 too, my experience was just like your first paragraph.

Where's OP?

ouryve Wed 11-Dec-13 23:37:11

Of course, this is the sort of shit we're up against
http://www.psychologytoday.com/blog/suffer-the-children/201310/can-walking-school-cure-adhd

Apart from when DH has been off work and the weather is shite, or DS1 has had a meltdown and we've had to call for rescue, after an hour sat in the street, DS1 has walked to school and back every single sodding day for 7 years. And a reputable sounding website, which carries articles denying the existence of ADHD, quotes Oliver sodding James who has probably never even met a child, never mind one with SN.

autumnsmum Thu 12-Dec-13 08:38:38

I agree with greensleves about the snake oil .at dd2s school there are children with profound severe disabilities.there are two I can think of with a life limiting disability .i am always humbled by their parents who I am sure would give the world for a cure

MrsDeVere Thu 12-Dec-13 12:29:32

See, I would love DS to be 'cured' of his ASD. I am not one to say that 'I wouldn't have him any other way'.
Course I would! His and our lives would be so much easier.

But the other side is that I have no wish to try and cure him. Because I know that ASD and LDs are part of him that cannot be removed so to try would be to tell him 'you are broken'.

We can support our kids and help them to reach their potential. All children, regardless of disabilities, have their own potential.

So because one parent does a piece of work with their child and they 'improve' does not mean that they all will or that it is confined to children with SN.

When we see this improvement in NT its called development. When we see it in kids with ASD it touted as a 'cure'

Oblomov Thu 12-Dec-13 12:42:14

Ds1's Aspergers can be cured?
30% you say, curing Aspergers.

Well Op, please point me in the right direction.

lougle Thu 12-Dec-13 16:56:00

With DD1, to cure her SN you'd have to know what caused it. Her brain is subtley different in lots of areas, physically. They have no idea which bits cause which difficulties.

With DD2, who has no dx or even proper acknowledgement (yet), it is intrinsic to her. I say that with full confidence - it's how she is. Even if it doesn't make itself clear all the time, it is there. Today, for instance, when I pointed out that her birthday is a Tuesday next year and her eyes widened then narrowed as her brain caught up - how could it possibly be a Tuesday, because it was Monday last year. Her breathing became rapid and a look of sheer panic and wild disbelief overcame her.

Every time something is new and unexpected, she reacts the same. She's not even aware of it. I can't be preparing her for every little difference in life. It's not possible. She can only learn coping strategies for when something is unexpected, not before something is unexpected, so she will always have that reaction, even if she manages to overcome it.

hazeyjane Thu 12-Dec-13 17:07:39

And with ds if you could completely change is chromosomal makeup (because,mlets not forget, this is a Special Needs board, and children with special needs can be disabled in many ways) then you might be able to cure him I suppose, but then you'd have to find the teensy bit of chromosome first, and that seems to be a bit of a conundrum (understatement of the century).

lougle Thu 12-Dec-13 18:14:02

Also, if you 'cure' DD1 you may well take away the most precious parts of her. Her generosity, her absolute desire to make other people her friend, her cheerful disposition, her eagerness to please and to succeed - I'm certain that they come from her condition - she's like a Peter Pan in that way. Yes, she'd probably be 'like' that if her brain wasn't malformed, but the extent of it is, I believe, down to that.

lionheart Thu 12-Dec-13 18:18:42

ugger, that is an excellent post.

MurkyMinotaur Fri 27-Dec-13 14:56:48

OP, I wondered whether these insights could help...

As a person with Aspergers myself, I've had to learn to think in terms of what's healthy rather than normal. It can help you to differentiate between what is worth investing emotional energy in trying to achieve. An example could be...some people chew things to stay calm - it's not 'normal' but it might be healthy for them.

I think that as important as achievement can be, I'm happiest now I understand who I am, now other people understand who I am and when other people like me as I am.

I went to uni and began a professional career, then crashed, burned and now have a part time minimum wage job and DLA. I like being me. I'm happy. I wouldn't want to not have Asperger's, because then I wouldn't be me.

If (in fiction) there was a single tablet that would cure me of AS, I would flush it down the toilet, held at arms length with gloves on, then burn the gloves just to be safe. And bleach the toilet. I'm being a little dramatic on purpose, but in seriousness, in my case, it would be like removing a core element of my personality - like a partial death, to remove AS.

Adolescence was very tough and long, and (pre-diagnosis) my poor Mum wondered where she'd gone so wrong. She hadn't gone wrong at all. She helped me, fundamentally, by accepting me as me. Perhaps she went too far in the opposite direction from you, because she didn't even seek help for me at all. So perhaps there must be a balance between these extremes, which involves accepting your child fundamentally and being proactive in helping your child develop and change...but to make them healthy...rather than normal.

MurkyMinotaur Fri 27-Dec-13 15:15:33

Also, Ugger...I too thought your post was good.

It struck a chord when you said, '^If it's an evangelical Christian trying to convince me that Jesus will cure my child through the power of prayer or magic beans, then I can't stop laughing at them.^'

I'm a Christian with AS and I want to apologise for the thoughtless things Christians sometimes say. There are some wrong and hurtful views out there. It's not all that way. At church, I draw in a doodle book through every sermon, usually sitting on the floor. No one has ever suggested I should be healed (or should sit on a chair). Actually, since I like drawing, someone asked whether I'd like to make some worksheets for the kids' activities. One of the core values at my church is 'everyone involved' and I thought it was brilliant that this meant 'as yourself' not once you've become 'normal'. That's how it should be!

youarewinning Fri 27-Dec-13 16:04:48

Because there is no cure. There are strategies and coping mechanisms and people can learn to live with their special need. There s a fab lady who does talks on autism. She talks about how she copes and fights what she wants to to to fit the socially expected norms. That's why a lot of children with ASD hold it in at school to some extent.

There are ways to make peoples lives with all sorts of disability, special need easier. Cochlear implants for hearing impaired for example. Your still deaf if you have one but the cochlear/ hearing aid assists to to be part of the hearing world. It's still not the same as being hearing. People need to recognise this and then others wouldn't need to get angry at people for them thinking there is a cure.

StarlightMcKingsThree Fri 27-Dec-13 19:01:50

I love the idea of helping our kids to be healthy rather than 'normal'. I think that sits comfortably enough in my fight for Ds to gain the skills to navigate society and advocate for himself, but not to then make his choices for him whether or not to avail himself of those skills as an adult, or to chose which ones.

signandsingcarols Fri 27-Dec-13 19:39:00

I too like the healthy idea, and liked murky minotaurs posts, (was smiling as ds couple of christmas's ago spent the service (in his hi vi vest, and ear defenders) dancing with his shadow to the carols at the front of the church, and no one batted an eyelid, true inclusion, grin

interesting post urwinning, I agree, but am personally not sure about the cochlear implant example... I have a number of adult Deaf friends who feel they are promoted/used in ways which move too far towards the 'you must accomodate the hearing world' direction, (I know that is a huge and complex discussion with heated feelings and opinions on both sides)

zzzzz Fri 27-Dec-13 20:39:17

Murky aiming for "being healthy" is a good way of thinking about it. Thanks for that. smile

uggerthebugger Fri 27-Dec-13 22:45:04

Hi murky, no need to apologise - your church sounds great, very much like the inclusive, softly-spoken Church of England community that my DP grew up in. We've had a lot of gentle support from them over the years.

Where we've had problems with Christians and SN, it's always been with the evangelical groups, particularly new converts - it's usually easy to spot them though especially if you've ever seen anyone coming up on a couple of strong bangers in a club , and it's no problem to take evasive action.

Murky, can I ask you how old you were when you first understood who you were and felt happy with it? My DS1 is 13, he understands what his disability is, how it affects him, and he has always accepted it - up until a few months ago. He feels differently about it now, as if he's less of a person because of it.

We've done everything we can to make him feel positive and confident about his disability and especially the way he manages it - but right now, he's on a downer. We're hoping it's just because he was in a bad educational placement last year where he got the wrong messages from adults and children. It might be just because he's 13 and everything physical and hormonal is in flux right now. But it's hard to see him go through it, either way. If you feel comfortable talking about it, I'd love to hear your thoughts...

MurkyMinotaur Sat 28-Dec-13 11:33:30

StarlightMcKingsThree - I agree with you. Essentially, I suppose it's wise to teach children what 'normal' socially expected behaviour looks like, then as older teens and adults they can choose to blend in when they wish or choose to be themselves, according to be context.

I love the 'healthy' as opposed to 'normal' ethos. One thing though (at the risk of stating the obvious) is that it also incorporates what's healthy for the family as a whole or healthy for the person's relationships with others at school etc. If something is healthy for me but comes at the expense of others (e.g. noisey, distracting, expensive) then it might not be healthy overall. It all has to be considered on balance and according to the context.

Ugger - You're welcome to ask. I was in my early 20's when I understood and felt happy with who I am. But, I was only diagnosed in my early 20's. Since then (3 years ago) I've processed my whole life in the context of AS and have come to understand and be happy with it.

I think you've done your DS1 a massive favour by having had him diagnosed because he's heading into adolescence with a prior understanding of himself.

I used to do youth work and I noticed that often, older children (or pre-teens) were confident in themselves, level-headed and seemingly quite mature. It was almost a shame they had to enter their teens! It was as though they started all over again, as though you had to bring them up twice.

There seems to be lots of identity formation in adolescence and knowing your difficulties are caused by your disability and that you're not 'stupid' or inept in some way can only be a good thing. I had a hard time at this age because of not knowing about AS during those years and I had some catching up to do post-diagnosis. But now I'm happy.

You're welcome to chat more. I wish I had more of the answers, but I'm happy to share my experience whenever it's useful.

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