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ADHD diagnosis help

(9 Posts)
MuteWitness Wed 21-Dec-16 20:42:03

Looking for some advice from anyone with an ADHD child on getting a diagnosis. DS is 10 next month and for a few years we've suspected ADHD. Main symptoms are hyperactivity: running and jumping around constantly to the point where he can't stop himself, compulsively fiddling until he breaks things, extreme talkativeness on subjects that interest him (football, WWE, video games, God help us!) whilst walking around in circles as he talks, inappropriate excessive talking to people he doesn't know in shops etc. Inattentiveness: cannot listen to/follow instructions, terribly disorganised, cannot complete homework, bedroom is horrendous, daydreams, forgetful, loses everything, can't do basics like shoe tying, forgets to use cutlery, clothes on back to front, inside out etc, can't concentrate in school to the point where he doesn't complete work and is kept in most break and lunchtimes to finish.

He's a very intelligent boy (he's been reading since he was three), confident, not naughty, polite, good friends, teachers really like him (though he's exasperating!), but he's not progressing in school as he should because he simply can't concentrate and fit into the system. We're worried about his SATS next year, and how he will cope in secondary school). His teacher (yr 5) is great and really wants to help him, she tries to keep him organised and on track with work, but she has to keep him in if work is not finished because that's school policy and can't make allowances in tests etc. So basically, he can get help from the school's special needs team, extra help in lessons etc, but only when we have a diagosis that they can work with. We've had two GP appts so far, one with us just as parents, and the second with DS. Dr was brilliant and made extensive notes and just from observing DS and asking him questions has referred him. But a few weeks later we got a letter telling us DS does not fully meet the criteria for referral (no explaination as to why) and asking us to instead go on a parenting course. The next day we got a phone call to book us on a course, the woman was very vague and slippery tbh (she wouldn't say why we can't see a specialist), she seemed to imply that if we complete the course, we'll get referred on... like a little endurance test!

Then we get another call a few days on, the original course for ADHD is not available and all we can do is go on another course, one for managing childrens' behaviour, positive parenting, rewards, etc... it doesn't seem at all relevant to our needs, DS isn't naughty, he's generally lovely, he just can't focus... and it's two hours a week, for twelve weeks! All I want is a diagnosis so my son can be helped appropriately at school, and this all seems really difficult and opaque tbh ... it feels like they want us to give up.

So can anyone help/advise who's been through the system before with an ADHD child? Do I have to do this course? Who can I contact to explain why he wasn't referred on right away?

lougle Wed 21-Dec-16 20:47:53

In my area, CAMHS will not assess unless the parents have been on a specialist parenting course, and require the name, date and location of the course on the referral forms (so they can check).

Many difficulties surrounding inattention and hyperactivity will be resolved by effective parenting/management/behavioural strategies and only a very small minority of children will require medication. So it makes sense to equip parents with those tools early on in the process, regardless of whether their child is just slightly overactive and impulsive or whether they actually have a diagnosable condition.

semideponent Wed 21-Dec-16 20:57:56

Has the school or his teacher written a report for the GP or completed a questionnaire? I think there is a particular, targeted questionnaire that helps to push the referral on… That said, we have ended up going private rather than using CAMHS - my DS is older than yours and we would have been waiting far too long where we live - so I am not sure quite how it works on the NHS. DS has an appointment in Jan and his diagnosis will (most likely) come through then.

I know all too well how difficult and frustrating it is. Hang in there, OP!

Theonlyoneiknow Wed 21-Dec-16 21:04:28

Where abouts are you OP? Help seems to vary depending on where you are. Ino Scotland you don't need am officially diagnosis before the school can officially help / extra PSA time etc. Your DS sounds very similar to mine. The school nurse has referred us to CAHMS so we are just waiting for appt. What was the course they suggested? Sorry I can't be more help but you're not alone flowers

Starlight2345 Wed 21-Dec-16 21:11:31

My DS is currently been under CAHMS for a completely separate reason.. I spoke to his nurse about my concerns about ADHD..She said it isn't something she would dismiss..Sent questionnaire's to school and one for me to complete..

School and myself responses were very similar ( apparently) We get to see consultant in January. She has mentioned a parenting course but has said she is aware a lot of the strategies she has already witnessed me using.

From what I read and heard the diagnosis process is slow.. It is really a label I don't want for my DS if it is not ADHD. My son seems to have similar issues in the fact it isn't pushed because he never gets in trouble at school but I think if he can focus he will do better...

My aim for next week while I have time off work is too spend some time looking at strategies that can help as I would rather go down that route first regardless of diagnosis or not.

Some of the problems are funding. They have to prioritise the children with the biggest problems..If he is not getting excluded and in trouble at school they won't put him top of the list..Frustrating for a parent who knows something is not right.

unlucky83 Wed 21-Dec-16 22:03:16

I think you should just do the course - you will lose nothing by doing it, may learn something useful and then you can be referred on.
He is easy to manage now but you don't know how he will be when he is a teen and the course might be helpful...
And you do have time - and if anything it is easier to get a diagnosis the older they are (up to being adults -when it gets harder!)
My DD1 was diagnosed at 14 -although I suspected she had it for years. She was doing ok ish at school - but like your DS struggled to concentrate, never finished any school work - we used to get it home... and she is bright - also reading before starting school.
But at secondary they have to be more organised and be more responsible for their learning. And that becomes incredibly stressful for them. I took her to get diagnosed because she seemed like she might be on the verge of school refusing -which is common. And it was actually really straight forward as I had years of school reports etc, She wasn't badly behaved at school, although she could be a nightmare at home sometimes - she can be oppositional.
Getting diagnosed has made a huge difference to her life - she is on medication now - just on school days. She could have left school (we are in Scotland) but she is staying on...she chose to. But the biggest difference has been to her self esteem - she knows there is a reason that she finds some things more difficult than her peers - and knows she had done incredibly well to still be in the top sets etc before her diagnosis.
I was offered a place on a course 'parenting teens with ADHD' after diagnosis and I went...I did feel like a fraud as the other parents were having much greater problems -police involvement etc - when all I wanted was for her to do her homework and carry on going to school! However I did still learn a lot - even though a lot of it was ways of managing her behaviour which I had already worked out over the years....mainly because I understood her really well - she is a lot like me.
I've just been diagnosed - in my late 40s. I was good at school (not so good at home) but then at around 13-14 started school refusing and then completely went off the rails..went and then dropped out of two colleges...
I was a complete nightmare for my parents -running away from home drinking, smoking etc. My relationship with my parents completely broke down - to the point they threw me out at 17 - I really was completely out of control. My parents did handle me really badly - but they were completely out of their depth - a parenting course may have been helpful for them. Without a doubt a diagnosis would probably have stopped a lot of heartache. ( I did go back to education in my late 20s and got a degree and a post grad -when I was ready and wanted to do it.)

MuteWitness Thu 22-Dec-16 00:04:57

Thanks everyone, all really helpful/reassuring replies. I'm just trying to see this course being an annoying hurdle to tackle so we can move on, but anxious to not waste time. GP told us we'd need some notes from his teacher and she's more than willing to provide those. Also have his school reports from previous years that back up the pattern. We were reluctant when he was younger to label him, and we waited to see if the behaviours would calm down. When he was a toddler I was completely exhausted by his chaotic energy and enthusiasm, but I thought that was what all children were like, until I had my DD, who is his absolute opposite, she's so domesticated and sensible!

DP (dad of DS) has ADHD, not diagnosed until adulthood. He is a lovely, intelligent man who has missed so much in life because he just couldn't get his shit together when it mattered, he got no qualifications, he found it hard to hold down jobs, his self-esteem suffered and he's had to cope with years of depression, plus difficulties in our relationship because he is appalling with money and so disorganised and messy at home. He's been on Concerta for a few years now, and that's made a massive difference to his life. So we really want things to be better for DS. I am reluctant to medicate him, but that will be a choice for him in the future I guess.

We are in Cornwall, theonlyone. NHS services are generally awful here, really overstretched. The course we're booked onto is for children aged 6-11, called 'Incredible Years Parenting Programme', it involves sessions on 'difficult behaviour, promoting self-esteem, developing routines, play, positive parenting, praise and rewards'... tbh, I just feel like we've got those things covered, we can manage his needs well at home, it's just that school requires things of him he simply can't slot in with. His behaviour is challenging, but he's not (yet!) oppositional or wilfully destructive... And he's on the upper edge of the age group, so maybe a bit irrelevant in that sense also, aimed at younger kids. I'm just feeling like it's going to be a bit of a burden going there for two hours each week, not to mention a waste of a place on the course for someone who might actually benefit... but I'm open to trying it, and especially if that's the only way to move forward.

Unlucky83, your post is really helpful, the different environment of secondary school is what really worries me. How accommodating was your daughter's school? DS literally loses something everyday, water bottle, jumper, books, coat, PE kit....And he will be going to an Ofsted outstanding academy school, with a reputation for being really hard-line on uniform (he'd be the most chaotic dresser on the planet, if it wasn't for my intervention!), where they wear blazers and ties and special socks and the whole ridiculous thing. We're sending him there because that's where his friends are going, and the only other school is the other side of the town, this one is literally round the corner. So I can see all sorts of trouble! I think that thing of your DD gaining self-esteem from her diagnosis, being able to feel proud of her achievements in light of her own personal difficulties, is what we really want for DS. Even just us talking through with him what ADHD is and that it may explain his difficulties seemed to make him feel a lot less frustrated and confused tbh. He wants to be a politician or a stand-up comedian, both of those he'd be ace at haha!

unlucky83 Thu 22-Dec-16 10:15:48

DD lost countless school jumpers, coats, home economics tubs, bus passes, ties, etc etc.
Although they were supposed to no-one really wore school blazers -they weren't forced. Then a new head started at the end of her first year and enforced it - they don't really take them off and wearing one has actually been a godsend for her. She leaves all her stuff in her pockets -they are bulging but she no longer loses or forgets to take her bus pass, locker key , money, phone etc. (For her locker key and now house key I also got a cat pet tag engraved saying if found please call and my mobile number -but she hasn't lost it since) I also started labelling her coats and jumpers etc with my mobile number but no-one ever called. Also she went through the not wearing a coat stage -so at least she stopped losing those (after 2 in first 3 months). Basically I worked out she had cost me £200+ in lost things in the first months...but actually they all go through a stage of losing things then so the school are used to it and quite understanding!
Her school (closest) is 10+ miles away - hard for me to check lost property. And she forgot to look - at one point I was giving her incentives to look or rewards for not losing things. eg she used to lose her phone and she wanted a new one. I said I would be mad to spend money on one when she only got her current one back because it wasn't worth anything - she could have a new one when she hadn't lost it for 3 months - she lost it a week before it was up sad -so she had to wait another 3 months. That might seem harsh and unfair - she does have an excuse...but to get through life she has to learn not to lose everything. I have developed a habit of looking back as I leave anywhere - it is automatic now - I only don't do it if in a great rush or flustered. It has saved me from many left purses, coats, phones and bags - I also always wear something with pockets - for my keys, phone, purse.
Work wise - she was terrible at doing homework etc. The school would send letters home about it. She had a planner but never filled it in - so I didn't know what she should be doing - she said it was too bulky to get out of her bag and no one else did. I actually went in to see her guidance teacher - and mentioned that I thought she might have ADHD but he obviously doesn't think it exists. And she was holding her own academically - even not doing homework and spending large parts of lessons apparently staring out of the window....
Like I said what made me get her diagnosed was the fact she started not wanting to go and I know (from my experience) there is nothing really you can do if they determinedly start school refusing. So I mentioned ADHD at a parents' evening to her teachers - some I think thought I might be making excuses for her lack of focus/effort but said I definitely should get her assessed. One thought about it for a minute and then said yes, yes of course - how on earth did all we miss that for so long?
After diagnosis I had a meeting with her new guidance teacher and we arranged a support plan. I bought her a little notepad that fit in her pocket for writing down homework etc - she still didn't fill it in. But we also arranged that her teachers would email me if there was any important homework outstanding so I could support her at home. And they have been pretty good at doing that -she was 'forgotten' when she had a new to the school guidance teacher who then went off sick for months and then left. I got letters home again.
But it is also a real case of choosing your battles - if she is doing ok and not doing homework it isn't ideal but bearable. However she really needs to do her exam coursework or she will fail. She knows that and her teachers are pretty good at letting me know if she is behind with that so I can support her at home.
(And she did manage to get her Nat5s (kind of Scottish equivalent GCSEs) - didn't do as well as she could have - did no revision and she has to resit one. But got 3 As in subjects she is interested in - good enough for her to do Highers (kind of AS) which means as long as she passes these (and she is interested in them so she should be able to) she will be able to go to university -if she wants to.
Sorry huge post - but the last thing I wanted to say -which I think is really important -and might not be such a problem if your DS isn't oppositional.
I have made it so it is all about her and her life. She is choosing to go to school etc so she gets exams which give her life choices. It has never been because she 'has' to or I am making her ...
With things like coursework and revision I will help her and support her as much as I can. I know and understand she finds it difficult but at the end of the day I can't do it for her and I can't force her to do it. If she doesn't do it I won't suffer - I'll still have what I have - whereas she might suffer - could end up with no choices and stuck in a job she hates. Also I know from experience - you can go back to education when you are older but it is a lot harder. Also I was lucky in that I did turn up for my O level exams and managed to scrape a few, which made it easier for me to get back into education. (I also 'failed' got Xs -incomplete for any that required coursework cos I hadn't done any...and I actually sat some of those exams not realising I had already failed...)
Good luck - and don't panic about it taking time to get a diagnosis. Do the course and view it as a step in the right direction. You do have time.
Like I said DD was just 14 and it only took 6 months from me going to the GP to diagnosis. And the brighter they are the better able they are to come up with strategies and cope in the meantime. And you understand him.

Shurelyshomemistake Thu 22-Dec-16 19:38:16

Actually the school cannot refuse to help while you wait for a diagnosis. Check out the SEND Code of Practice, 0-25 years, it is very clear on this. Many many schools and local authorities will tell you this is the case but no, not really. It's just a way of rationing scarce resources.

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