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AAAAAAARGH.... ADHD [long rant, sorry]

(23 Posts)
WilfShelf Mon 15-Nov-10 15:23:10

Oh god, I am going ROUND and ROUND...

DS is now going to be under observation from the Behaviour Support team. The teachers are muttering (well, they're not, but I'm surmising...) ADHD [hyper, impulsive/explosive, can't sit still, violent sometimes...]

I need somewhere to spill all the many thoughts and questions I have about all of this. I keep going backwards and forwards. Kind people who know what the diagnosis process is like tell me to just knuckle down to help him get the support he needs, and without a diagnosis, he will just be left 'naughty' and not helped.

The ADHD books/websites: argh and double argh. DS2 - and I, interestingly - tick ALL the boxes for diagnosis. But of course we do: we are temperamental, creative, demanding people.

And it all seems both such a blessed RELIEF to find myself and my own 'issues' in a book that describes me to a T; a worry that DS might - if I don't act - end up somehow 'worse off' than I am (because I'm really not 'worse off' except in the kind of motivational, self-esteem, procrastination, organisation issues LOTS of people have).

But it is all such 'astrology': surely, everyone reads the criteria and they fit?

And I can't get over my own scepticism. Such nebulous mental health issues are not just issues of diagnosis: they are of 'context'. I don't want DS to be labelled; I want school to be different. It is surely a problem that he can't sit still, that he hits other kids, that he gets manic and can't take stuff in. But he's just one extreme of ALL the kids in his class. And the label, and/or the medication are only one solution to a social problem: with smaller classes, less national curriculum driven schools, fewer targets etc. then he could and probably would thrive.

I don't want to take resources away from those who need them. I don't think we need special learning support more than say, a kid with ASD or dyslexia or other SEN.

And I don't really fully think the science is adequate yet: I've read LOTS of papers now, and lots of self-help stuff. And I think there is definitely an 'IT' but what 'it' is, is very unclear.

I don't suppose very wealthy, very upper middle class, intellectual, boarding school type families have kids with ADHD: I imagine they end up sending them to eccentric private schools and then they go to Oxbridge where their weirdness and need for stimulation is met. They call it something else: individuality? I'm caricaturing of course.

I'm not saying 'I don't believe'. I kind of do, a bit too much. But even the acceptance of the label in order to get extra support seems wrong.

From everything I have read, I - for example - could improve some of my problems with work, home organisation, confidence, managing my time etc by taking something like Ritalin. Or by having some one-to-one help. Or by having my own 'wife' grin. Or by just being better at not putting things off.

Some people say, look, don't worry about believing or not, just get him the help he needs. But what if he doesnt? What if he just needs time? Or a different school? Or a different teacher?

Sorry to go on. And on.

anotherbrickinthewall Mon 15-Nov-10 15:33:53

problem is, you can only do your best with the information you have at the moment - you will only know if waiting and seeing rather than going down the medical route is the "right" thing to do several years down the line, if you do nothing in terms of referrals etc and your lad fits more happily into school. I wouldn't have thought the behaviour support people would be giving any sort of medical label, presumably they are specialised teachers?

anotherbrickinthewall Mon 15-Nov-10 15:34:52

btw I just had a look at the ADHD diagnostic criteria - and I wouldn't come anywhere near meeting them, they arent that vague iyswim. NB I do have a different mental health diagnosis, so not just posting that in a smug way iyswim.

Gipfeli Mon 15-Nov-10 16:08:29

I've been lurking on a few of your threads because you seem to be expressing a lot of the concerns I have about ds who is 6.5, has some speech problems that don't seem to fit exactly to anyone's expected pattern of speech impairment and a "diagnosis" of dyspraxia which seems to be more about getting funding for his occupational therapy (we live in Swizerland - the system is different) despite the fact that he doesn't really fit most of the classical signs of dyspraxia and in fact is exceptionally good at some of the things. He may have some sort of "vestibular processing disorder" and apparently his fine motor skills are pretty poor and his arms go up and down when he jumps but that seems to be it.

And now we have to go and talk to his teacher and someone who I presume equates to a SENCO in the UK about his behaviour. But I'm not sure what exactly about his behvaiour it is that we need to talk about and I'm going round in circles reading and thinking and talking about this to try and work out if this is in fact a "problem" to be solved or whether it's just who ds is. Apparently he's very stubborn and I'm struggling to see that in itself as necessarily a bad thing.

I read the various criteria and think, that although some of them match, that's not ds overall. And then I worry that I'm in denial and maybe I'm need to grade him more severely.

Added to this for me is a basic worry that expectations here are different from the UK and that what I value in ds may be seen as undesirable here. Or maybe not. I don't know.

I don't have anything gof any practical input to say but just wanted to say that I think I understand some of the things you're saying.

daisysue2 Mon 15-Nov-10 16:39:51

Hi Wilfshelf Just to put things into perspective my dd was asked to leave her very expensive boarding school and they refused to cope, it would mess too much with their results, or take resources away from other children. It's only the amazing local state school that seem to cope so well with her.

Believe me if the school are trying to get extra help they mean that it is needed, by them and they are struggling to cope without it. I think you will find that many people are fighting to get this kind of offer.

Don't get caught up too much in what is a pet topic in the news about too much money going into SEN where it isn't needed. Believe me it's needed.

sunnymum44 Mon 15-Nov-10 16:47:58

Mmmmmm, we're at the same stage with DS. Except it's us at home who have always thought there was something wrong and the paediatrician has told us she thinks he has moderate ADHD. I'm actually more worried about the school knowing so the opposite to you in a way but the same view that I don't want him "labelled".

School have brought up his boisterousness and silliness as issues but surprisingly he seems to be doing fine with learning to read etc. so my dilemma is do I go for a diagnosis?? They have never mentioned that they think there is anything wrong with him as far as I know. The school would have to fill in a questionnaire so would find out what we have been dscussing with the paed. My DS is at a private school and my worry is they won't want him....... and he won't get the support like they do in a state school where they can provide teaching assistants purely for the special needs children.

What I do know is that you're exhausted, frustrated with your DS and he probably rules your household and creates numerous issues/ problems for you which are utterly draining. For us it has been a relief to know that we haven't been going mad/ are bad parents etc etc and that there is a name for this. But I don't know if I want a diagnosis......... I really sympathise and empathise with you.

My only advice would be to see a paediatrician in a private appointment so that you can see what they are asking him/ observing rather than letting it happen at school where you may not be able to be involved.

ouryve Mon 15-Nov-10 16:53:42

Put it this way: if you do nothing, then nothing is likely to change for the better. If anything, your son's behaviours are more likely to deteriorate if he isn't given coping mechanisms because no child acts like yours (and mine, for the sake of clarity) does for no reason. He clearly needs help with school routine, whatever that help may be. Some kids simply do, even with small class sizes and low demands.

The way ritalin works on ADHD is to stimulate chemicals in the brain so that it's able to speed up and keep up with all the stimulus that it simply can't cope with. That, seemingly paradoxically, increases focus and helps the person taking it to be calmer because they're better able to process all the information from all of their senses. If someone without ADHD were to take ritalin, the effect would be much like having too much strong coffee, so it's not a wonderdrug that could make just anyone perform better.

Oh - and ADHD can affect people from all walks of life, even those who can afford to send their kids to private schools.

WilfShelf Mon 15-Nov-10 17:43:55

I know I am being a prize wanker grin.

The private school comment was not meant to be a dig. It is just I think different social groups will inevitably deal with whatever the 'it' of ADHD is a different way.

And I have serious worries about medicalisation of the continuum of extreme normality! I know Ritalin will work on people with ADHD. But the fact that it works does not mean that is evidence of a medical problem.

I still think my own parenting is part of the issue. Of course my impulsive parenting may well be because I have ADHD too.

Argh.

Willmum Mon 15-Nov-10 20:47:35

Just an aside, I have one child at private school and am probably what you would call middle class (if there is such a thing). I also have a son with suspected adhd, possible asd, a severe speech disorder and probable dcd.
He has had no different unpbringing to my daughter, he is just as he is and I honestly have no doubt that there are medical issues behind it.
I do nothing differenly with my son, yet he is very different to his sister. I really don't think people 'deal' with it differently, I think they just 'deal' with it however they can.
For some that means pushing for a diagnosis, for others running away from one. I guess we just all struggle to cope. I would listen to what school are saying though. Often they talk rubbish and there are lots of people (myself included) facing the other issue of schools saying there is no problem because their dc are not having meltdowns.
Also don't be lulled into thinking that because you recognise yourself in some of the adhd 'checklists' that your son is exactly the same. I am aware that I tick several asd/as boxes and have a brother with asd yet I was able to cope and function resonably well. My brother however is 25 now and is living in a resedential setting and will never be independant (not suggesting thats what you or you son are like) just trying to make the point that it's not the same for everyone.
Sorry if this sounds a bit preachy, I don't mean it to, If it does I apologise, I just thought I'd other a different perspective.

daisy5678 Mon 15-Nov-10 22:03:22

I think the Ritalin working for ADHD is evidence of a medical difference. Ritalin is basically speed. In typical brains, this would create hyperactivity etc. In ADHD brains, it calms them.

You said "I don't think we need special learning support more than say, a kid with ASD or dyslexia or other SEN." Well, my kid has ASD and requires full time support, 1:1. Is that cos I've labelled an extreme normal personality trait? No, it's because he wouldn't function without it.

You can't get diagnosed with ADHD or autism really unless the symptoms are interfering with everyday life. If your son is just fine, he shouldn't get diagnosed.

I don't think it's 'astrology' and I think it's a shame for your son if, if he does have issues that need extra support, you dismiss it all.

WilfShelf Mon 15-Nov-10 23:38:12

I'm sorry if my post seemed dismissive: reading it back, I can see [again] how it does. Especially to people who have had to struggle against prejudice and the NHS to get a sorely needed diagnosis.

I suppose I wanted somewhere to post my doubts, my scepticism, as well as my enthusiasm for the idea of something that explains so much in my son. I feel so very mixed and mixed up about it all.

I am not sure I can post such doubts anywhere else on MN, because of all the screaming harpies shouting 'oh don't be ridiculous, it doesn't exist'. I haven't said this; but I do feel I need to give the evidence a really good going over.

And please don't for a minute assume I am 'dismissing' it, or preventing my son getting what help he needs. I don't say what I say at all lightly. The last couple of weeks have been non-stop research and heartsearching. I am an academic and it is basically my job to be sceptical. Someone said 'don't be an academic, be a mother'. I'm struggling a bit with the division right now, because the right outcome seems to depend on splitting myself down the middle. I could just go with the process and take what everyone says about the difficulty of being misdiagnosed seriously: you all know this so much better than I.

But I'm wracked with doubt about whether it would be right for my son to go down that route. It is not out of neglect for him - precisely the opposite - that I am asking the questions. Everyone says 'to get him the help he needs'. But what if he needs a different kind of help?

I'm really sorry to go on. I'll withdraw from this thread now. I guess I'm pissing people off.

daisysue2 Mon 15-Nov-10 23:53:09

You probably will have a misdiagnosis. ADHD for many is just the first in a list of labels often eventually leading to something much further out on what is called the spectrum. But what is a diagnosis of ADHD in it's simple form. It's just a list of symptoms or behviours that the child has, it's not a genetic test that confirms they have a condition. An ADHD diagnosis is often a first step and is really saying a series of behviours are causing concern and they are not within the norm.

Once you have the information from the rating scale you don't have to tell anyone about it. It's up to you what you do with the information you are given.

I kind of liked the ADHD label, it seemed much friendlier and more fun than the eventual label of Autism she was given.

daisy5678 Tue 16-Nov-10 00:07:01

No, you don't need to go. Like you say, where else can you say it? I just think you should be careful not to label mental disabilities as somehow less important or in need of support than other disabilities. I think perhaps you didn't mean to - perhaps I'm oversensitive, but it did come across that way.

Davros Tue 16-Nov-10 08:56:58

Wilfshelf, DO NOT leave your own thread! You need this place as much as any of us to express your conflicts, doubts and concerns. But, of course, you can get responses that make you feel MORE conflicted, upset etc. I am very interested in all this and several recent threads about "is he, isn't he" etc have been helping me to understand a child in DD's class who I think has ADD (at least). Regardless of how helpful I find it all, this is the place to have your conversation with yourself as much as anyone else. I for one will be reading and sympathising and trying to be supportive as much as possible.

Willmum Tue 16-Nov-10 09:59:14

I agree with the above two posters, you should not leave your own thread and I don't think you've pissed anyone off. At the end of the day , we're all here trying to find the best supoport we can and us all having different ideas/ questions is what makes this such a great source of advice/help and you're absolutly right to question, I do constantly and your post has made me consider my thoughts on my sons problems. If you can't air your thoughts here, where else can you?

WilfShelf Tue 16-Nov-10 10:10:42

Thank you.

Hissy fit over [I hope]

Son had a brilliant day yesterday. No trouble at all at school. Went to my mum's over the weekend, no trouble there, although they do use a 'divide and rule' strategy, as do we, because DS2 is often a lynchpin of conflict. I've always put this down to him being the middle child and his brothers being so much older and younger than him. I still think this is the main issue tbh. I'm just not (yet) convinced that he needs more than some careful and sensitive management until he matures a bit.

He doesn't have any particular emotional withdrawals, he makes good eye contact, plays imaginatively (just this morning we were playing 'restaurants' with DS2 being the waiter and DS1 (3) being the chef and me being the customer. They loved it and played wonderfully together with me. He doesn't obsess about things, doesn't make noises, doesn't flap or fiddle or walk on tiptoes.

He is academically able - he's the eldest in his class and is an advanced reader and good mathematician. He's interested in a wide range of things - he loves reading his encyclopaedia, he loves art, he loves playing football and incidentally, is good at it: much better at this age than his older brother who lolloped like a red setter - DS2 has good balance, good fine motor control - his writing is small and neat and even and he concentrates on it. His speech is complex and rich, he (mostly) sleeps well, although he can sometimes struggle to get to sleep.

He does fly off the handle. He loses his rag but with intervention, he manages his fury quite well. We and the school were working quite hard on 'naming' the feeling and letting the adults be in charge. Before half term it was working really well, and he had weeks of excellent progress emotionally. Now it all seems to have been thrown back after a single stupid incident (of biting in line) and I basically think he doesn't have a 'disorder', he has some emotional issues that need careful management.

I say none of this to piss others off. Just to characterise him. I feel like I'm being put on a juggernaut he and I don't actually need to be on.

STARSOBRIGHT Tue 16-Nov-10 11:44:33

wilfshelf
these are the turmoils we all have when we start on the sen path! i fought for 2 yeras to get my then 5and half yr old son seen by camhs eventually at 7yrs old they took me seriously he was seen by ed psych who then immediately asked my permission to refer him to camhs for possible adhd diagnosis! i had read all the books done the tests and all came back blatantly obvious(to me) he had adhd,they like to wait generally til they are 7 yrs old before diagnosis and problems MUST be at home aswell as school.My son bahaved similarly to what u have explained other than as years went on he got further and further behind accademically as his focus/concentration deteriorated and frustration kicked in more and more! schools have to obv use there given funds to pay for assessments etc and wouldnt do so unless they thought there was a real need! which obv ur sons school does,it only helps ur child in the end i assure u thats what happened with us its been 5 yrs since my sons diagnosis i didnt want him medicated to start with i didnt "agree" with it but at 8 i agreed and we tried various drugs like ritolin but found methylphenidate concerta xl worked well for him along with a statement of sen he can now physically sit down ,listen and focus in class and is not aggresive at all ever!! more than anything he now loves his school life as he is no longer the "naughty boy" i will say he is a little quieter but very happy and notices the diff himself,i do not give him medication at weekends or hols as i love the hyperactive very busy son we have and believe i dont need to change my child at home but change the environment around him to suit which at home u can do school is very diff! do it for schooling and accademic reasons which hois consultant is happy with

STARSOBRIGHT Tue 16-Nov-10 11:47:34

and yes i agree most of us can fit into the criteria of the tests diagnosing us as having adhd but it must be most of the time as in daily/frequently! hope this helped thats my waffle over too lol

anotherbrickinthewall Tue 16-Nov-10 12:06:46

Wilf - my experience I must admit is with the ASD assessment process but not that ADHD one - but from all I have heard and experienced, if there is any sort of doubt about diagnosis, the medics will happily do a bit of waiting and seeing, and certainly can't force medication on you. the people I know who have had prescribed medication for their kids, it's always been after a long discussion process, not something they have been rushed into. Am sure if you wanted to explore non-medication routes to support difficult behaviour, you would find a lot of support on here.

mariagoretti Tue 16-Nov-10 12:34:06

Hi wilfshelf. I've looked very closely at the medical evidence... and the existence of the condition. There's more evidence for ADHD diagnosis and treatment than for most other conditions affecting behaviour and functioning. But medical labels are arbitrary. 100 years ago, our models of most diseases were radically different. When (if) we reach old age, diabetes, heart failure, asthma etc. will be quaint old-fashioned terms. Or the meanings will be radically different.

I sympathise with your feeling that your son would thrive in a different education system. Trouble is, only a diagnosis gives you the right to demand that schools do make changes. You've probably heard of the Battle of Britain fighter pilots using methylphenidate to stay alert. My hypothesis is that many of the brave, quick-thinking, RAF aces also had what we'd now consider ADHD. I'd love to track down the veterans and ask!

STARSOBRIGHT Tue 16-Nov-10 12:37:43

daisysue2 unfortunately adhd is and can be genetic so can be tested as well as scans showing malformation in that front lobe of the brain, obviously the symptoms are usually apparent and severe enough to not warrant full testing as it proves nothing more than the diagnosis camhs will give anyway. but yes sometimes in the young the symptoms between autism and adhd can appear to be similar explaining ur route via adhd diagnosis first,whereas we got that diagnosis and will it appears stay with the label of adhd,i just wish medical professionals would take adhd seriously as a majority in my experience dont is it similar with autism or is there more professionals in aggreeance? just curious thnaks

ouryve Tue 16-Nov-10 12:39:52

Wilfself - definitely stay around!

For further clarity, DS1 has a diagnosis of autism and at the same time he got that diagnosis, there was a query about whether or not there was co-morbid ADHD, but he was only 3 at the time. It was only when he was almost 6 that we said enough was enough and sought a firm diagnosis along those lines because it was clear that behavioural interventions were not able to even begin to help him.

If your son is evaluated, drug therapy doesn't have to be the first resort if he is diagnosed. You would almost certainly be offered support with behavioural strategies. If CAMHS felt there was something else going on to cause his behaviours, such as sensory overload, they might put you in the direction of an OT who can help out. "The Out of Sync Child" would probably be worthwhile reading for you, anyhow because it's crammed full of simple things you can try to help him stay calm and focussed and help you get a better idea, yourself, of where his difficulties might be coming from. It helped us a lot while we waited 3 years to finally be seen by an OT who was interested in DS1's sensory issues.

STARSOBRIGHT Tue 16-Nov-10 12:44:04

meds are def not something u will find ur pushed into as anotherbrickinthewall rightly said it was coming up 2 yrs b4 i made the decision with no pressure atall and tried various types b4 we found one that worked well for my son and us as a family, ur not just given meds and thats it the children have some kind of behaviour therapy alongside it and if ur lucky enough to have fantastic support groups such as adhd solutions in ur are as we do in east midlands u will as a family be greatly supported! also as was said if u research u will see many stars passed and present are thought to have had adhd sports stars scientists alsorts this helped my son accept it as he got older

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