Adhd

[Worriedandonedge]

Following a meeting with DD2s class teacher and school sendco- they have agreed with me that DD2 shows ADHD/ADD tendencies.

They confirmed they'll put a CAHMS request in (how do I go about checking on this) and will provide me with some contacts of private professionals that other parents have used should I want to take that route.

I could really do with some guidance on the system please for those in the know...

1. how do I know if DD is severe enough to need assessment

2. is school request to CAHMS same as a go request or should I be going to the gp too?

3. what will she gain from being diagnosed (or is it just a label?) primary school are helping with interventions now already as agree impacts her learning

4. are EHPCs something I need to learn more about or only depending on an outcome of an assessment - and if so will they consider private or only nhs assessment

Basically I just don't know where to go and whether she requires it... and what steps to take when.

Please share your experiences with your adhd children and what the outcomes have been and if that's been helpful for them?

I'm in north London if anyone commenting has specific local recommendations.

Thanks!

There is a computer based test for ADHD - I don't know the name of it but DD did it last autumn along with the ADOS (for autism) and a speech and language assessment. We used Starjumpz in Crowborough. We have now arranged some play therapy through the Owl Centre in Oxford - they seem to act as a clearing centre so you don't actually have to live in the area (as far as I know).

Anyway, my point is that specialist private centres exist. I suggest your first port of call should be to read/view everything on the ADHD website.

But when my DH and I watched the ADHD test being done, it was very obvious that our DD's brain worked differently to the normal - something we were already suspecting before lockdown and the terrible experience of lockdown "learning" confirmed.

Anyway, in summary, you'll have no problem finding appropriate assessment services in North London but you'll have to pay unless you want to wait years and your best sources of info will be specialist charities and other parents.

Unless you're very lucky, your GP will know nothing.

Gah, meant to say 'from the norm' - something like 1 in 20 children have these issues so they're normal! Also I meant the ADHD Society website.

@Phineyj thank you for this!
I'll look into the websites you mention.
Is it really just an online test? I thought I'd need a child psychiatrist or psychologist or education psychologist to diagnose?
Did you look into getting a plan for your child after diagnosis?
Have the school helped more due to a formal diagnosis?
Has medication ever been mentioned or have you tried it?
Thanks

@Phineyj also out of curiosity- what sort of questions / things were in the quiz / test you watched?

It's a computer based test but it has to be done supervised by a paediatrician (and possibly also a speech and language therapist). The child has to click a button or not click a button in response to certain prompts. The expected result is a nice smooth curve. DD's looked like a Jackson Pollock!

Medication - we had massive sleep issues so melatonin was prescribed which has really helped. I'm not keen on stimulant meds as they tend to suppress appetite and we already struggle to get her to eat. I'd consider that for secondary (she's 8 and working at expected levels although there's about a year gap I'd estimate between her ability and what she can do).

School have been helpful but it's private so that has helped through smaller classes, more TAs, more sport etc. We didn't know she had any kind of SEN when we chose it for its wraparound care -- which ironically we've had to stop using as she's like a shaken Coke bottle by 3.30pm!

I'm a teacher and the vastly more experienced SENCO at my own school was a huge help.

We haven't pursued an ECHP as it doesn't actually entitle you to anything in practice, sadly.

The diagnosis has helped us understand DD's behaviour and to stop feeling like the world's worst parents, at least some of the time. It has also speeded up finding suitable therapy people.

You could ring Starjumpz for a chat. They're lovely and maybe they know North London places by reputation.

@Phineyj thanks for all this!

I'm pretty certain somethings up.

Thankfully whilst not a private school our school are taking a huge effort to help kids who need more support or have fallen behind following
lockdown.

She's having small group sessions for maths and English about 3 times a week and she talks very positively about these sessions.

I could see DD2 really didn't focus on her classes in lockdown 2 and this is what gave me the push to have the conversation and now the more I read about adhd I realise that other issues like her ability to flip and be full of rage and hard to calm aren't just her being naughty and prob all tied in.

She is also 8 (just) year 3.

Unfortunate I also struggled in lockdown two so wasn't the best mom to support dd2 through it, as my brother was in ICU following a suicide attempt and I was the one chasing the Hospitals and sorting things and my mind just wasn't in the right place so I just couldn't focus on my kids beyond getting their sheets printed and getting them logged on to their live lessons. Also dd3 in reception who couldn't do anything much independently... and DH can't do his job from home so never been home through each lockdown.

Time to do some more reading and look for the right extra support and diagnosis for her

We haven't pursued an ECHP as it doesn't actually entitle you to anything in practice, sadly.

^^This isn't correct. A vague and woolly EHCP isn't worth the paper it is written on. But, one that is detailed, specific and quantified (which it should be) is, and if the provision isn't provided it can be enforced via Judicial Review.

EHCPs can provide a myriad of therapies and provision not otherwise provided, not to mention the funding of placements other than state mainstreams.

@10brokengreenbottles ah interesting thanks for the added input.

Do you think there is a "level" at which a child needs to be in terms of severity in order to get an EHCP and the school to get funding?

And can you do this route with a private diagnosis or only with an nhs one (which I gather can take years especially in current climate)

What type of therapies can be funded by an ehcp and more generally what type of therapies are recommend for a child with adhd? (should I choose to look into that privately too).

Thanks!

You can apply for an ECHP yourself - you don't have to wait for the school.

10bottles is right in theory of course but sadly it is evident to me from the Facebook group I am on for parents of PDA kids that the ECHP doesn't make a great deal of difference unless you are applying for a special school where students have to have one. This is only my experience of course. Maybe there are a few bits of the country left where the process actually works.

The bottom line is there is very little money for any of this so whatever you decide to do OP be prepared for paperwork...and more paperwork! And then some more paperwork!

Your DD's school sound great BTW. I had concerns about ours because it's rather competitive and I wondered if they might kick DD to the curb. But I misjudged them - they've tried really hard.

for you, OP - your 2020 sounds so stressful. My Dad was in ICU last year too and on the same day he got blue lighted in I got a call from Social Services due to something DD had disclosed at holiday club. Onwards and upwards!

I have found 'Smart but Scattered' useful for working on executive functioning skills (like packing a school bag), 'What to do when your temper flares' for CBT based activities for anger, '10 Days to a Less Defiant Child' and 'The Explosive Child' useful for parenting (these are all on Amazon - all American though so sometimes you have to mentally translate).

The threshold for an EHCNA is a) has or may have SEN, and b) may need SEN provision to be made via an EHCP. Any other test is unlawful - not 2 years behind, spent £6k, 2 assess/plan/do/review cycles... Schools and LAs often discourage parents, either intentionally or due to being misinformed. If you apply and are refused, appeal, the majority of appeals are upheld.

Funding isn't a parent's concern. Instead the focus should be on ensuring section F is specific and quantified so if can be enforced if provision isn't provided. If the school need more funding they should approach the LA.

You don't need a diagnosis to get an EHCP, they are needs based, so a private diagnosis shouldn't be a problem. LAs that say they don't accept private diagnosis are acting unlawfully. Assessments such as EP, SALT and OT are part of the needs assessment anyway. LAs are required to consider any independent reports. In practice, many LAs 'consider' but undertake their own assessments anyway. If you do go private it helps if the HCPs also work for the NHS.

EHCPs can include therapies such as SALT, OT (including sensory OT), physio, play/art/music/equine/Lego/rebound/hydro... therapy, CBT. I know DC with ADHD who have SALT, OT and play therapy via EHCPs. Sorry I can't be more specific about the therapies that are helpful for ADHD, my DC don't have ADHD, but 2 do have EHCPs.

Phineyj this is why it is essential the EHCP is specific and quantified, even if it means going to tribunal. Then the parents in the fb group could ensure the provision is provided via JR. Many are vague, woolly and unenforceable, and parents don't realise until provision isn't provided and they can't enforce it. Sadly children whose parents can hold the LA to account and navigate the system get better support.

DS3 (ASD in MS) has physio, OT, SALT, full time 1:1 and smaller things like touch typing and ELSA. He wouldn't get the level of support he does without an EHCP. And DS1 (complex MH problems with an EOTAS package) receives 10 hours 1:1 home tuition and 10 hours of other provision/therapies including physio, SALT, OT, ELSA, hydrotherapy and Lego/art/play/rebound therapy.

@10brokengreenbottles sorry - new to all this!
You sound like you have a lot of experience - so thank you for taking time to respond!
Can you take me through what some of the acronyms are you have used for therapies? I only know OT and CBT,

What is EP and SALT? Thanks!

Educational psychologist, Speech and language therapist.

EOTAS education other than at school (tutors etc). ELSA is language support. ASD autistic spectrum disorder (PDA, that I used in my post, is Pathological Demand Avoidance, a particular kind of autism). MS mainstream. LA local authority. JR judicial review. Phew, this is worse than Mumsnet!

Apologies for using so many acronyms. Thanks Phineyj.

HCPs = health care professionals.

I missed DS3 in mainstream also has Lego therapy.

What does Lego therapy do out of curiosity?
My school had one of my other kids in a Lego morning group for a couple terms a while ago...

ELSA is emotional literacy support.

Thank you both for all
The translations!!!! So much new terminology...
I'm going to read about PDA this could be something linked to DD2 too...

It's all strange to me - Looking back at my childhood and siblings I'm thinking we may have some adhd tendencies too that we just learnt to live with but (without wanted to sound arrogant) I think we all were naturally quite intelligent and could get through our work whereas I think DD2 learning doesn't come naturally so I'm seeing it having an impact and that's what concerns me - if she's falling behind already at age 8 then how will she cope as she gets older

For my DS' part of Lego therapy is working through a traumatic bereavement. It also helps with social skills, social interaction and social communication.

X posted again. Even if it isn't PDA some of the strategies can be helpful.

I have found socially and emotionally the gap between NT peers and DS1&3 just gets bigger as they get older.

Interesting! I think may have been for dd1 social and team work help...
Another acronym??? NT??? 🤷🏻‍♀️

Ah! So that's what ELSA means. I knew it couldn't be to do with Frozen .

I think that's a good thing to take away, OP - you don't need a diagnosis to try strategies that might help.

Also I think the school system was a bit less centralised and formal in the past which may have helped different personalities. My DH would most likely have had a similar diagnosis to our DD but he made it all the way to Cambridge thanks to supportive parents and teachers.

Sorry, again, NT is neurotypical.