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I know I'm being unreasonable, but get really annoyed at parents who seem to WANT their children to have special needs.

56 replies

daisy5678 · 26/04/2008 19:17

I see it in my job loads and all over the internet too, and it's making me really angry. And then I get angry at myself for letting myself get angry!

Before I start and get other people angry too , I just want to put my annoyance into context. My son wasn't diagnosed with ADHD and ASD until after he'd started school, and I'm sure there were a few people who thought - oh yeah, great excuse for the child's nightmare behaviour. I think part of the public's perception (and certainly the Daily Mail's ) is that parents make up medical conditions to get SN 'perks' and benefits for their kids or to excuse poor behaviour.

So I guess that's why it makes me so angry - I always knew that there was an underlying cause for my son's extreme behaviour and I know that I'm lucky that dx'ing was always done with no pressure from me - the professionals could just see it - but I've had a nightmare with DLA this year and was told 'we just get so many who make it all up'. So I'm now cross at those people who are making something out of (almost) nothing and giving everybody else a bad reputation. It also makes it much harder for people like Bonkerz, who has a child with something that clearly needs dx'ing but is having such a hard time getting it recognised, perhaps because there are some chancers out there clogging up the waiting list.

I'm not talking about anyone on here, by the way, but on another forum I go on, there's one person in particular who has a slightly unfocused child and who read about ADHD and decided that she and her child had it. She's said that the child is a little fidgety and lacks focus at times.

She got her child assessed by what sounds like a very sympathetic paed who went off parental history and was apparently set to dx or at least consider the dx'ing the ADHD until the school sent their reports in which said that the child was absolutely fine and no more fidgety than a normal child that age. They catergorically stated that the child did not have ADHD symptoms, so the paed wouldn't dx.

The mother was outraged and was all for sending her child to school on fizzy drinks to 'prove them wrong' . The paed had explained that symptoms need to be present at home and school but the mother saw this as part of the school's grand plan to deny her child the dx.

When pressed to explain the reasons that she wanted her child to be dx'd, given that there were no problems with violence, tantrums, hyperactivity etc., she said she wanted the child to 'get the help needed' - but couldn't really describe what.

She applied for DLA and was furious to be turned down - blamed the school report - though admitted that the school was just reporting what they found to be true - there were no problems with the child at school.

She then decided that she wanted child to be statemented (for being almost a year behind with spellings ) because 'other kids with ADHD are statemented' and saw the refusal to dx as another conspiracy to deny the child the Statement, despite being told that dx wasn't needed for Statementing.

I have met so many parents who will insist that their child has a condition in the face of evidence from their teachers, paeds, psychs/ whoever. This has usually been parents of children who behave poorly and are trying to find a reason, and I have some sympathy with that, though less so when they won't accept that there is no underlying condition, just more discipline needed. I understand wanting to find a reason for why your child behaves the way they do. I just cannot fathom this above example.

It really devalues what parents of children with genuine conditions go through and devalues these conditions too - this woman has self-dx'd her ADHD and had told her child that they had ADHD before they even got the CAMHS appointment and told the child that they can't help it if they can't concentrate or get bored - just tell the teacher you have ADHD! Now that the paed has said it's definitely not ADHD or ADD, she had told the child that the paed is wrong!

If I've offended anyone, I'm sorry. This is not about anyone on here; it's about those who are screwing up the system for the rest of us by exaggerating something to get what they can...and it annoys me when I've had to push so hard to get everything and still fell like I'm banging my head against a brick wall half the time .

No need to reply...just wanted to vent my anger!

OP posts:
daisy5678 · 26/04/2008 21:33

And what's the prize???????????????

OP posts:
pantiesandsussies · 26/04/2008 21:46

givemesleep
this is for the other mother

daisy5678 · 26/04/2008 21:48

I just try not to respond to any of her messages, other than to say things like 'oh isn't it a relief that your child doesn't have an incurable lifelong condition - you must be really pleased' when she talked about not getting 'her' dx for her child.

Don't think she liked that response though .

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bonkerz · 26/04/2008 22:46

I know how oyu feel Givemesleep, for a long time i lived with people staring at me as if i was a terrible mother with a badly behaved son, i started to believe that was true and felt that way until the pead said he felt DS was more complex. TBH I am still in a place where with no FORMAL name for DSs problems i feel a bit of a fraud saying he is on the psectrum BUT i know he is.
I cant imagine anyone wanting to have a DS like mine (obviously when he is good then YES but on his worst day???) I would defy anyone saying we were 'lucky' when DS is assaulting teaching staff, screaming and self harming in public and having a tantrum in the middle of Pizza Hut purely because he found a bit of cheese on his pizza that had got a little bit scorched!!

daisy5678 · 26/04/2008 22:48

But Bonkerz, you KNOW that you are not a fraud because you KNOW that both you and the school are experiencing problems with your son that go beyond what is expected from a child his age. If he was just a bit fidgety then yeah, you'd be a fraud. But he's not just a bit fidgety and you would have a lot more luck getting him help and a formal dx if it weren't for the fraudsters who put the professionals on their guard.

How are thing, btw? Did the clinician person get back to you?

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bonkerz · 26/04/2008 22:53

no lead doc didnt get back to me, i rum out of steam by friday afternoon so am ashamed to say i didnt chase it up. I will get around to it Monday! LEA panel meets monday to decide what will be est for DS. Its a case of sitting and waiting and i should be able to find out by tues pm then got big decision meeting on Wed.
If decision from panel is no special school then we are stuck cos he cant go back to his MS and cant stay at PRU. If panel decide YES to special school then hopefully it will be the unit BUT if not then i dont know what will happen and we may have to remove DS till sept when we go to appeal. Its all too much right now especially as DS had a bad day today. Can you believe im actually looking forward to getting up at 4am and going off to a car boot because i get some alone time!

daisy5678 · 26/04/2008 22:57

Yep, I can compare that to being happy to go to Sainsbury's on a Saturday afternoon just to give ex a reason to go out and leave J with him!

Good luck with the panel - will be waiting to hear!

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bonkerz · 26/04/2008 23:01

cheers mate, fingers crossed but im not exactly sure what we WANT IYKWIM. although mounting evidence now just backs up our claim that DS needs full time MS with backup of Unit. PRU officially excluded DS last week and sent me the paperwork which shows DS cannot even function in a PRU unit that deals with extreme ADHD behaviours!

wannaBe · 26/04/2008 23:03

dontcha know? I made up my disability because I wanted to be allowed to take my dog to work .

Seriously though, it's a sad fact that these people do exist. There's a woman I know who claims her ds has a disability because he still wets himself at the age of 5. The reality is that he has never had an accident anywhere other than at home. His home life is less than stable though which imo would explain his behavior, but she won't have that, she would rather give him a label.

bullet123 · 26/04/2008 23:52

"One mother took great delight in saying one day, 'that's two more conditions to add to my tagline!' - she had written: 'speech and language difficulties, auditory processing difficultes, language difficulties, speech immaturities, speech disorder"

Erm, aren't several of those things just the same thing repeated .

ouryve · 27/04/2008 00:01

Heck, if anyone wants to give it a try, I have 2 who I will loan out for a small fee. All I ask is that I get them back at least as happy as I sent them, with no injuries. I really should go into business hiring them out to test out babyproofing. Between them they take less than 30 seconds to spot a weakness and unchecked would destroy all unsecured consumer electronics in the next 30 seconds.

I spend so much time wishing the ground should open up and swallow me for behaviour that is not the fault of either kid, but could be so easily misinterpreted that I really do wonder how anyone could wish it upon themselves for the sake of a few quid. The reality of their needs is also so bizarre in some ways that I doubt there's many could really convincingly fake.

daisy5678 · 27/04/2008 00:25

Bullet: that was my point! She just wanted a longer tagline than everyone else!

Another one had: 'son is diagnosed as ASD, autistic, High Functioning Autism, Aspergers and Social Communication Difficulties'

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sarah293 · 27/04/2008 09:36

This reply has been deleted

Message withdrawn

PeachyHas4BoysAndLovesIt · 27/04/2008 10:15

No no no Riven

try harder!

Imagine you've got our Paed who sees HFA and AS as a dx, then assuming he has iteral speech add in semantic prgamatic language disorder as a separate... then, as he has a history of stress related issues, remember that's there too.... anxiety disorders.....

see how it adds up?

(mind you if genuinely disabled kids do it just to help with getting statements etc have no problem, its what our school does- Sam has a different and longer one every time I go in!)

PeachyHas4BoysAndLovesIt · 27/04/2008 10:15

No no no Riven

try harder!

Imagine you've got our Paed who sees HFA and AS as a dx, then assuming he has iteral speech add in semantic prgamatic language disorder as a separate... then, as he has a history of stress related issues, remember that's there too.... anxiety disorders.....

see how it adds up?

(mind you if genuinely disabled kids do it just to help with getting statements etc have no problem, its what our school does- Sam has a different and longer one every time I go in!)

TotalChaos · 27/04/2008 10:54

pmsl peachy - SPD was also my first thought as well as an add on! or you could add on hypo and /or hypersensitivity.

Flame · 27/04/2008 11:12

I worry I am one of these parents

DD seems fine at school according to teachers (ok, they haven't tested the theory by changing things suddenly, but still), and yet a lot of things otherwise point to AS. I feel she is close enough to the NT end of the spectrum not to get a dx, but that she does need parenting differently.

I know at least one of my friends thinks I am making excuses for my crap parenting.

Half the time I wonder if I am too

daisy5678 · 27/04/2008 12:11

I'm sure you're not, Flame. I do believe that usually parents know that there's something 'different' about their child, esp. with ASD type things - but that's very different from deciding that a slightly fidgety child has ADHD. In that case, the mum is seeing the same things as school i.e. a slightly fidgety child, but wants them to overexaggerate things so that her child can get a dx, DLA and a Statement. In your case, you see different things from the school and I think that's quite common with ASD.

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Flame · 27/04/2008 12:24

Yup, I agree with the ADHD I feel for Psychomum at the moment - the teacher has just raised the possibility that her DS2 has ADD, and it is a penny dropping moment - we have just thought he was unfocussed due to being the youngest of 5 and there always being someone/thing different to flit too. Now it is the thinking... hmm... it could be something else.

DD is seeming more "different" as she gets older. I have just asked her to pile up the toys in the lounge that live in her bedroom... she doesn't want to do that "Can I make lines instead"

ALMummy · 27/04/2008 12:35

My own H told me that I wanted DS to have ASD or Aspergers because I wanted attention for myself. This after three different nurseries and primary schools had flagged up concerns. TBH I did everything I could to AVOID a diagnosis just kept burying my head in the sand. It didn't really help that I couldn't even discuss it with DS's Dad without being told the above.

jellyhead · 27/04/2008 13:10

This reply has been deleted

Message withdrawn at poster's request.

bullet123 · 27/04/2008 15:27

I am pmsl at the ultra long taglines .
I've been advised to write the "worst day" scenario for the DLA form, but I knew it meant to write the things that were happening on a regular basis.

jenk1 · 27/04/2008 20:05

hmm you could have been describing me in your first post, when i say describing i mean about the refusal to give up when the psych said no to ASD.
i wouldnt take no for an answer even though i had the school writing reports saying he definately did NOT have an ASD in their opinion.
i was also accused of "fabricating" symtoms because ds didnt display his anxiety in school
i probably came across the same as the woman you describe, i also put in for a statement (although this was because ds was out of school due to severe anxiety).

i kept on and on and on and on at CAMHS and the LEA and now 2.5 yrs down the line he has a dx of AS and he,s in a special school with a 2-2-1.

i didnt apply for dla though until a while after all the crap started.

ScruffyTheCampfireSprayer · 27/04/2008 20:18

I find your OP rather worrying tbh

what you might perceive as a 'fidgety child' might be rather different from her perspective...and there is always that niggling possibility that you might be WRONG

I am one of those parents in the 'is he, isn't he' camp at the moment, and being virtually accused of Munchausens by proxy by some woman who doesn't know me or my child would really help

daisy5678 · 27/04/2008 20:32

SHE, from her perspective, only describes her child as 'slightly fidgety'. She says that her child can't sit still for longer than half an hour (this is a 7 year old...I think that's actually quite normal).

I know that I might be wrong, which is why I was nervous about starting the thread, but the above is her ONLY reason for going down the ADHD/ statement route...not you, Jenk1, with your son who clearly had so many of the AS symptoms and was being held up by muppet paeds, and no you, Scruffy, who presumably has more than one reason for thinking your child might have an issue.

This woman has a child who is 'slightly fidgety' (her words) and can't sit still for longer than half an hour and THAT'S a problem worth DLA and Statementing and a dx? NO. She's said herself that her child doesn't really meet any of the criteria but says "it is about more than tick boxes...I know in my heart that my child has ADHD".

Really sorry if I've offended either of you, but this woman is making something out of nothing, not something out of something, and so I can't apologise for how I feel about her (though happy to apologise if I've made you feel bad).

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