What kind of support does your child with ADHD receive?

[YouFilthyAnimal]

My son was diagnosed last year and put on to meds almost immediately
And that’s it
That’s all we’ve had
We have spoken to one person at CAMHS who diagnosed him within minutes of meeting him and prescribed meds a few weeks later and now at our regular appointments all she does is check his height, weight, blood pressure, ask if he’s had any side effects of the tablets and send us on our way
He hasn’t seen an OT, behavioural therapist, SALT, literally anyone else
I don’t get any advice from her whatsoever, no ‘homework’ no ‘let’s try this for the next few weeks to see if we can help him do this’
Nothing
Ar our last appointment she wanted to increase his meds and I asked when we were going to explore other routes but she said she can’t until he’s reached ‘maximum ADHD control’ off his medication, but surely if I know better ways to help him and he also has some kind of therapy alongside the medication he will reach that quicker?!
She just won’t send him to anyone else
And I don’t want to just keep increasing and increasing the medication (which will surely have to be increased as he grows anyway so we’ll never reach ‘maximum control’) until he’s a zombie all whilst never even giving the poor kid a chance at therapy?!

Sorry that turned into quite a rant, just wondering what therapies and other help other children are getting?

No advice, but my son has just been diagnosed with autism, and suspected AHDH, but they won’t diagnose that until he’s 6.
Are there any local ADHD support groups near you? There may be parents there who have recommendations.

Have you noticed improvement with the meds and how long has be. Been on them?

Surely school have put in place measures?

@Whatislove82 Yes we have seen massive improvements in most areas, tbh though I feel like as his ADHD symptoms have quietened, it’s bringing up lots of other issues I hadn’t noticed before, I think, and have always thought, he may need an autism assessment too but I just keep being told to ‘wait and see’
He’s been on them since April

I’m not really talking about school?

The meds have resulted in other issues?

how long has he been on them?

No but the school should Have an SEN department that will be able to help you

Lol, nothing. It's a bit of a joke TBH.

We were offered coaching but it was completely useless, they just told us totally normal strategies that we were like er - that doesn't work, that's kind of the problem? And the therapist seemed completely baffled that this was a thing.

Not even on meds. OK we got recommended a workbook.

I like Russell Barkley's resources, I do recommend his book Taking Charge of ADHD. It has a great plan and framework in it and you can use this to push for support. He is very strongly for medication and he does suggest that you get the medication sorted/adjusted before you try to make any other changes, because this is how the other changes can be effective. Basically it's like if you were trying to teach a child to read, but they needed glasses. You have to ensure you have the right strength glasses, and get used to the glasses, before any of the learning to read strategies will be of any use. You can't just throw strategies at them before they can see the letters clearly because they won't be able to use them.

Yes I have regular meetings with the SENCO at school, he’s doing really well academically so they don’t have many concerns

What I was hoping to get from this post was for people to say ‘we see CAMHS every 3 months, an OT every 6 weeks, he has play therapy every month…’ things like that so I could go into CAMHS next time and say we need more support, why are we not getting this
The people I speak to in real life seem to have a whole team of people helping their child, I just have one woman who really doesn’t offer me any help at all

Depends on the severity OP and impact on them

They can’t offer that level of support to everyone , they just can’t. So have to prioritise

ADHD medication should not be making anybody a zombie.

It seems strange that they are wanting to increase it when you've been on them 9 months? I thought that usually, they increase and increase and increase until you get to a point where either the increase hasn't resulted in any improvement OR the side effects have begun to outweigh the improvements and then you go back to the previous dose and stick with that.

Or is that what you're still doing and it's just taken that long? (I do think it's useful to have a decent amount of time to try each increase so that would make sense.)

Oh it’s so frustrating isn’t it!
We we’re sent a little bullet point document about sleep that said things like ‘make sure the room is dark and quiet, have a bedtime routine’ seriously?! You think I’d be here if I didn’t know and try the absolute basics? He doesn’t sleep for longer than 45 minutes at a time and you think it’s because he doesn’t have a bedtime routine 🤯

Thankyou I will look up that book, I do get the premise of getting the meds right first, but he’s 7, he will grow, so meds will constantly need adjusting, so surely giving me some advice and tips and tricks to do aswell can’t hurt?!

No he’s been in one dose from the start, we had an appointment on Wednesday in which she said she wanted to increase them as new things have developed

In our experience (autism), a diagnosis gets you no help or support. Nothing. To be honest I'm not angry or surprised...there is not enough funding for support given the numbers being diagnosed.
You are far better off educating yourself hard & fast and implementing what you can at home then ask school to follow through.
Join some FB groups - there's literally thousands of parents like us sharing strategies (& stories of no support).

Why do you feel he needs OT or play therapy? What issues are you concerned about? ADHD is a condition that varies wildly between individuals and seems to have a few different causes as well. I work in secondary SEN and I have adhd myself, we have students on EHCP who have struggled for years even with lots of support to get symptoms manageable and we have kids who do okay with minimal intervention. The kids that have most difficulties have adhd plus other difficulties.

Yes I felt like this with the coaching!

But I did mention this to a friend and she said that it's actually quite unusual to be the parent who is on mumsnet looking up behaviour strategies, to be reading dozens of parenting books, most parents won't be doing this to this level and some don't even know about the most basic stuff, so it can sometimes be helpful to start at the beginning and say look, let's try these basic things first. So it can help to kind of do it as a tick box excercise and say nope, it's not that.

I don't know that much about medication admittedly but I don't think the dose gets adjusted hugely as they grow - the initial titration is usually the most important thing.

If you haven't come across Russell Barkley before, he also has an excellent talk on youtube called 30 essential things for parents to know. It's very long but I really found it incredibly helpful (I have ADHD myself).

I think if there are specific issues that you are concerned about, it would probably be helpful to bring them up at the next appointment and ask if there is anything you could/should be doing to support this.

If it's just a general sense of feeling lost and not knowing how best to support him, then I think learning about ADHD and going with the medication process is a great start. You say there has already been a large improvement, which is great.

We were emailed a pamphlet from the paediatrician about a year ago shortly after his diagnosis and prescription was accepted by NHS (Long story short, but we sought a private diagnosis after being told he'd be university age before he'd be seen by clinicians--after first getting referred in Year 7. He's 15 now..)

DS has weight/height/bp checks twice yearly, but that's about it.

@wonderstuff he has huge sensory issues, he is massively sensory seeking to the point he will chew his own skin until he bleeds and then we are constantly fighting infections on his fingers, he is forever spinning, climbing etc, has had countless accidents and injuries through this including a broken nose, it’s also a safety risk when we are out and about as he just bolts with no warning (and is fast) and I also have 3 other children so I can’t always chase him - I think I’m right in thinking an OT will help and advise with sensory issues?
I also think he needs some kind of behavioural therapy to help with the anger, he can be very very angry - I know that’s part and parcel of adhd but I think we need someone to teach him, and me some strategies for when he’s in a rage

@BertieBotts i do ask her - I generally get told to do whatever I think is best 🤯 I don’t know what’s best because I’m not an expert!!
Tbh I think a little bit of what you said about me going in there pretty clued up has bitten me on the bum because now she thinks I’m fine and I know what I’m doing … and I don’t! I can read all the books and websites in the world but adhd is so specific to each child I was really hoping for some support catered just to him

It’s terrifying how underfunded the system is, it’s no wonder there is such a mental health crisis in teens atm, maybe if they jumped in and offered support while they’re younger we wouldn’t have to wait for a crisis!

I would see whether school are able to do anything more, you are more likely to get some good ELSA support for emotional regulation than CAMHS I would think.

Where we are parents can self-refer to a lot of children’s services including OT, again school may be able to advise on this or may be able to support themselves, I have done sensory work with kids before, looking at ways to support harm reduction with other stimulation.

The SENCO supports more than academic ability. What are they doing to support the other areas of DS’s needs?

If DS needs ongoing SALT, OT, play therapy have you applied for an EHCNA?

In some areas you can self refer to SALT and OT, if you can’t have you specifically asked for a referral not just from CAMHS but GP or if school can refer in your area the SENCO? Not all ICBs commission sensory OT, but it’s still worth a referral, and if DS has an EHCNA an assessment can be included in there and ongoing therapy in an EHCP if you secure one.

Regarding the chewing get him a chew necklace - even Amazon sell them
I really think you should join some FB groups. I've had to mute the ones I'm on as they are so active in terms of advice.

Sensory Chew Necklace Chewelry for Kids or Adults with Autism ADHD Who Need to Stim Chew Bite or Fidget Chewy Aids Help Concentration Biting 3 Pack BGT amzn.eu/d/dMJDXRk

We have lots of these

We can’t self refer in my area, I will see if school can, I think school have done the same as me and basically thought CAMHS would take care of all of that now

I know the SENCO can support in areas beyond academia the problem is that they don’t have the problems at school that I do at home, and I go in for my meetings and they say ‘no concerns’
The only extra support they have in place for him in school is that he has wriggle breaks, can take in his chew toys and fidgets and he has extra supervision at break and lunchtimes
He has an EHCP yes

I think I may have come across like I know nothing about ADHD here, trust me that is not the case, I’ve known DS was ND since he was about 9 months old and I have fought and fought to get this far, I have done my homework, my Mum worked with adults with learning disabilities for her entire career and has offered guidance where she can, I promise we are not clueless and we are trying we really are
i just expected some support from you know, actual experts, I guess not