ADHD

[Caribo]

Think DS13 needs an assessment. Wondering what support he can expect from school. His issues are mainly low level disruption (talking too much), being very forgetful, always needing to fidget with something and not really knowing when to speak and when to listen in conversation (interrupts a lot). He is kind and thoughtful though, with a wicked sense of humour, but he plays the clown a lot, which I'm worried is masking something.

Looks like I need to ask his gp for a referral for an assessment in the first instance, but hoping for any thoughts as to what sort of support we can/should expect from school (state).

Unfortunately in reality no support (I say that as a teacher) My current cohort of year 7s has 67% SEN and literally no support staff to help them Funding for support staff is literally nothing now and it's a crying shame as there's so many children with low level support needed that could be helped with the extra help of a TA.

Thanks @Fullofpudding I had a horrible feeling that would be the case particularly as he's probably not that severe and is generally pretty well in control of his emotions. But I know some teachers are more tolerant/have more patience than others. In one of his lessons last year, he did really well. He said that was because the teacher made it really interesting (even though he wasn't that fussed about the subject!). I think that was because they chose to use a lot of different learning methods and kept his attention/interest going. He just ended up with a stack of detentions in others. I don't know what to do for him.

Not holding out much hope for help in the community either tbh - I assume support would come through the woefully underfunded and overstretched CAMHS?

Unfortunately very little.
I have two dc with asd and the support has dwindled to a once every half term email asking me if they are any problems/issues, I report back (including any adjustments I feel may help) and nothing is done and we go round in circles.
Schools have had to cut budgets and sen support seems to have been cut much more than other areas. The staff we have are lovely but don't have the numbers needed or resources.
Also check who needs to make the referral in our area its school which doesn't help if they're not supportive.

My daughter has ADHD. I have been very fortunate as her school have been great. They put support in even before diagnosis (I suspected ADHD at Primary, she got diagnosis in Yr 8…) which was v helpful. She has the inattentive type and masks a lot at school.

Support from school includes:
one page profile detailing her difficulties and what strategies work for her
being allowed to have small unobtrusive fidget things in lessons
extra time in exams (this has been a game changer)
time out pass so she can leave the room if it is overwhelming (she’s allowed to go to non teaching head of year office)
early pass so she can leave lessons 3 mins early and avoid the crush in the corridors
weekly check in with named member of staff to offload any worries / deal with any issues

Some of the teachers are great, have clearly read her profile and support her brilliantly. Some have clearly never read her profile at all… we had a ‘fun’ parents eve last year where one teacher started the 5 min slot by telling me she would do better if she was less distracted. No shit Sherlock! But on the whole she’s thrived from the support and the staff who ‘get’ her.

My advice would be to get to know SENCO, push for whatever support you think will help, and don’t be afraid to challenge (politely!) when staff don’t follow the plan set. I’m an ex teacher but no real prior experience of SEND. It’s been a learning curve for me too.

That's really helpful, thank you both. I think the route here for assessment is via gp. I'm wondering how long that might take too. I guess it's a postcode lottery! I'm fast adopting an "expect the worst and be pleasantly surprised" mindset, if he gets anything at all. It's just paining me that he'll just keep ending up with detentions for his behaviour, rather than anything preventative. I'm not even sure what they can do though - I'm assuming an assessment would identify strategies that would help? A profile and being allowed a fidget toy would be really good, as would check ins and reminders for detentions.

DD (14) has ADHD.

No extra support in place, but school are very tolerant of her erratic executive function and complete obliviousness to hierarchies. We picked a fairly liberal school to start with as DD and strict rules was never going to be a good match.

The main benefit has been the effect of medicating her which has resolved a lot of the issues that we had.

In terms of times for assessment, it's a postcode lottery. Where we live, the GP said it was 2-3 years for initial appointment and while happy to refer said if DD was his child he would go private especially as he had very little doubt that she wouldn't get the diagnosis. We opted for that and it was around a 2 month wait - which we needed to get all the forms and questionnaires and reports sorted anyway.

Assessment doesn't really identify strategies at all - it's literally spent looking at the child's profile and whether it fits a diagnosis or not. We were keen to try medication so once we had the Dx, that was what was discussed. Not sure what they would have suggested if we hadn't wanted that. Medication was the consultant's recommendation for DD and some psychotherapist sessions to help deal with her anxiety.

There are some books with strategy ideas that could be helpful.

Best that we have found is using tech as much as possible - calendars and apps, and I have to take over a lot of her life admin. Basically work on the premise that your child is functioning 2-3 years below their chronological age in terms of what they are able to manage on the organisational front.

If you have the cash I’d go private or you could be waiting years. Cahms 😂 what’s that 😂 sorry not helpful - I doubt you will get much out of them. Or maybe you live in a different area to me and they might be great🤞

Would you want to medicate? That’s really what’s helps (after getting) a diagnosis however sometimes the side effects are just not worth living day to day - but each child is different and for some medicine is life changing - so who knows what will work will your child if they do have adhd.

Good luck!

The whole referral process was a nightmare here and the waiting list was huge, up to a year to get referral accepted then another 26-52 weeks for assessment. During the time we were waiting for the nhs referral both my parents died and I was able to use my small inheritance to pay to go private. Getting the diagnosis was v helpful and DD is on medication now which, touch wood, is making a huge difference and which she’s tolerating very well. The cost of private prescriptions is high (£100 a month approx for prescription and meds) - I don’t have private health insurance - and we’re in the queue again to get her transferred over to nhs for what they call shared care. I’ve no idea how long that will take but it’s not moving quickly!

DD found that having a diagnosis and knowing what was behind her difficulties really helped her mentally. She’s been much more willing to engage in strategies like writing lists, using an app to help her remember etc than she was pre diagnosis when she was very adamant that she was the only person who felt like she did and nothing would help. There’s a book called ‘how not to murder your ADHD kid’. I hate the title but the book is very good and worth reading.

Ps, if you do go private do lots of research before choosing. There seem to be quite a few charlatans out there

Also recommend reading 'The Parents Guide to ADHD Medication' if you would consider meds - and read it in advance of any appointments as then you won't need to ask half the questions you would otherwise. It's a really easy read and very comprehensive.

We're about to move to shared care on the prescription front - GP seemed to think it was just filling in one form so that sounds ominous reading PP. Ours are currently about £120 a time but last a couple of months.

Jeez, really grateful for the replies, but it's not a great picture out there is it! Poor kids. No way we can afford private and tbh, I think I'd prefer to try strategies first and medication as last resort. This is due to a history of heart conditions in the family and I know there are some risks in that department.

I agree it's not the best title, but will look up "how not to murder your adhd kid" - might have to pass it to the teachers as well!

So disheartening, when as I say, one teacher seemed to really hit the nail in the head for him, in terms of how they structured the lessons. I thought it was really interesting that he could tell the difference too. I might contact them for advice (they are in a senior role) because it sounds like a lot of kids might benefit if the teaching is better geared in this way.

Oh, if they are interested then the hyperfocus kicks in and they learn loads. Unfortunately it's the reverse with everything else.

DD would do brilliantly if she had been allowed to take only 2 subjects since Reception... happily we only have five terms to go before she can do exactly that, but in the meantime there's those pesky compulsory subjects for GCSE.

There are options other than stimulants in terms of medication, so worth looking at those given the family medical history.

We've been very fortunate in that DD appears to be one of the lucky ones who responded extremely well to the very first meds we tried. It has been utterly life-changing for us all. I've been buying a lot of ADHD strategy books as we might now get somewhere with them, so will flag if I find any good ones!

Sent info to gp feb 23 and now have forms for school and home to complete. Not sure when any appt might be.
But the questionnaire is crazy as asking about maths and reading!

Like pp i do treat dd as youbger and organise her. So i pack her bag and pe kit. And make her do homework.

my 13 year old is struggling at school to the point where she's only doing 2 hours a day,
she's showing many signs for adhd and I've noticed it for while. She hardly ever sleeps and gets very hyper and showing other signs. I've been having none stop meetings with the school and just won't refer her. They feel it's pointless because the waiting list is too long? They do have things in place with senco which is fine. But my point is, if a child needs an assessment, how can they refuse? They said " we will put things in place,like she has adhd " I don't see how that's good enough, when she might need medication or other support . I've been to the doctors. They won't refer her either. They said it's the schools job but wrote a letter to the adhd department. I haven't got a clue what to do? I looked into private and can't afford it.
I feel terrible, that the system is failing her and worry when she leaves school. I worry how this will affect her. I feel like she's going to be misunderstood if she's not diagnosed when she's an adult.

Mine was " low level disruption" too, or barely any disruption to the teachers. His hyperactiveness and inattentiveness only dragged himself down for years. By the time when he turned Y5, the gap between him and his peers was evident (socially). But the teachers either didn't see or didn't think it's worth raising the flag. After COVID, I cried over the phone with GP saying we couldn't cope anymore. The GP was very sympathetic and agreed drafting a referral -- but just need something from school to support it. Waited for a couple of months and chased, school SENCO rang back saying she's certain DC didn't have ADHD.

So, all in all, we bit the bullet and went private and started medication. It's still far from a normal child, but it provides quite some steadiness in his life and he feels more in control too. We still have a lot additional work to do, but bearing no hope with NHS. So we will still have to self fund like speech therapy and if any more than that.

OP, I know it's really almost impossible to go private. But every year passing by, your DC would fall behind further and further. Especially in their teen years, the hit on self esteem can be irreversible.

I don't know what the solution is. Maybe in your area the waiting list is shorter than 2-3 years unlike elsewhere. So perhaps ask locally to have a gauge first?

DD has just been diagnosed in Y13. Here the gp has to refer them and with a bit of persuasion he did. Initially he said she couldn't have ADHD because she does well academically, and even if she did have it she should think of it as a superpower. Not particularly helpful for a kid who has managed to pull it out of the bag so far but is falling apart more and more each year, constantly exhausted etc.

We were lucky to be able to go private (assessment cost £750) and the gp said they would do shared care once the dose is settled, although I am a bit worried about that because the consultant was surprised and said our surgery's policy was always to say no. Anyway she has just started on medication and we hope it will help. Currently £80 per month but will need to go up again I think.

Almost identical to us. Great school but not the bootcamp style. Went private and meds within two months

Twins who have ADHD at different schools. It really depends on the school but as a min ADHD kids usually get rest breaks in exams, option to sit somewhere less distracting in exams and classrooms.