Parents of ADHD children - assemble!

[Saycheeseburgers]

A thread to share solidarity. Mine are 8 (diagnosed) and 5 (no diagnosis, I think possibly ASD rather than ADHD).

My biggest triggers from my 8 year old are his wind up behaviours. He tries to annoy DH and I, and he mercilessly teases his younger brother for a reaction. He also reacts very badly to being told off at all, which unfortunately is often.

He is very funny, both an appropriate and inappropriate times!

He drives us up the wall with his lack of listening even though we know the reason behind it.

He’s not taking any medicine but we are hoping to try some this year.

@weebarra thank you

My dd 11yo awaiting asd/adhd diagnosis for a year.
Anxiety/depression/wants to die
rigid - wont go to school clubs as lunchtime to eat lunch
wont make friends
Bullied by other kids
like pp is capable of so much more than schieving she got sats of say 10%-25th from top. But for maths its all unforced errors! or running out of time. Ability is more like top 5%. Y6 she was doing only 1 question in maths per 20min.
ideally she needds a 1-2-1 to make her pay attention and actually do the work
special interests many but if its not interestong to her she is very hard to get her to do it. Very particular in that she likes art but didnt like set homework so 3h to do 20 min of work!
i was sure of adhd before 3. Never sit down at toddler groups. Or in reception.p
lots of issues in reception.
School useless. In that they knew there was something but blame all kid behaviour on parents.
Issues at all clubs and activities .

she is impulsive so its more like adhd than add.
my 8yo i havent referred - yet. But used to abscond until achool age. Very over sensitive about hurting herself. Sensory issues. But no issues at school. Worse than dd1 almost at home. She does hold it on at school and explode when comes out.
She has friends - but doesnt seem to connect at deeper level so no weekend meet ups etc. We did go to a farm with her friend and parent but dd did behave a bit like af home

There really isn't an easy option and I do feel sad for DS, though he doesn't seem to notice the lack of parties luckily. Maybe I'm overthinking that.

To those whose kids are good at school and act out at home, we have noticed this in the last week. DS used to be pretty much the same in both places, but as it seems his behaviour has drastically improved at school, so he seems to be losing it at home in the evenings more than he used to. We have a cat who every so often has a mad half hour, where he just careers about, chases things, and sometimes chews us a bit. Then he's calm again. DS is like that - he will suddenly lose it, hit us and his sister, run about and throw things, with no or just a mild trigger. I am wondering if he is bottling things up at school so much more than he did last year, that he just has to have a release. It's hard to deal with though.

On the age you noticed your child might have ADHD, with us it was definitely on our radar from Reception, but I think really the signs were there beforehand, it was just nursery was easier for him to cope with as it was less restrictive. But his main carer there definitely had ways of dealing with him, sticker charts, and various rewards for a good day etc, so he was definitely more challenging than some of the other children.

Also, DS had hearing issues when he was a toddler, and when we took him for tests they would often be unable to complete them because he would lose concentration so easily. We just figured all toddlers have short concentration spans, and they do of course, but the fact he couldn't manage the toddler tests suggests maybe more was actually going on. It's all hindsight though.

This is interesting @DazedandConfused1234 . I wonder if my DS is similar, although he doesn’t have the big outbursts of energy (saying that he doesn’t have time, we work him like a dog, he has sports clubs most nights except Wednesday). He is definitely better in school gradually. What sort of things do you think your DS has improved with? My DS still wanders/fiddles a bit but I think it’s much less. He used to be quite defiant with the teacher in Y1 and start of Y2 but I don’t think that’s an issue now from the chats we have with his teachers. He still doesn’t like being told off (and I mean in a minor way, like asking him to stop messing with something or to sit down!) and has a face on him or puts his head on the desk. But I take that over answering back and being rude to the teachers!

Those whom medication helped, how do you know you have the right dose? DS is on 18mg slow release methylphenidate (we’ve had a couple of brands due to shortages) and is obviously more focussed, but I don’t feel we know what is optimum because we’ve been used to his inattentive baseline. Noticeable that you can have a conversation staying one one subject for more than two sentences and that he is getting good behaviour marks rather than bad ones at school but is more better?
School have never raised it as an issue because he’s not throwing chairs just low level disorganised and unfocused - so he gets a lot of negative behaviour marks but not enough to trigger any SLT involvement. It wasn’t until we asked SENCO to do a round Robin of all the teachers for ADHD markers that they accepted there was an issue. We think he’s underachieving academically but as he’s bright he bumps along more or less meeting expectations and not raising eyebrows.

DD 16.
Always knew that she had traits but only got a diagnosis once it started affecting mental health.
It's still under assessed in girls, especially bright well-behaved ones. Things that we've found out are very very common but not spotted as suggestive of an issue:
Toileting problems long after potty training & difficulties getting dressed and undressed (say through most of primary school), not doing any schoolwork but doing homework really well (so 1 teacher to 30 kids versus 1 parent to 1 kid!) , stimming, short-term obsessions with things, huge overreactions, poor sleep.
Then there are the way they're treated by schools. If you've ever felt 'but s/he's really bright and really compliant, so why do the teachers NEVER pick him/her for the team/play etc...I thought it was just my experience but now I've met lots of other girls like mine, there's a real theme.
And then they end up in their teens with absolutely no confidence, unable to understand what they've done' wrong'.
BUT mine is fabulous, fun, academic, sporty, the lot. And so funny and creative to boot. It's a rollercoaster!

My ds started on 5mg methylphenidate which didn't do anything. He cannot sit still, fidgets, has to be moving is VERY impulsive etc.. he's now on 10mg (twice a day) and so school are mainly seeing the positives of more focus and attention, sits and listens more, has been able to go on the playground now for better behaviour, its not perfect but the difference is amazing really in his ability to access school now.. his first two years at primary were terrible with alot of school refusal and no real support in place, he hated it, now I get tears when holidays come up because its now his routine (he's current teachers have been great and understand him and his needs more than the previous ones)

We do also give him the medication at the weekends and again, the difference in him/his behaviour is very noticeable. One downside is the poor sleep although, he's a poor sleeper anyway, he's also on melatonin which helps but he's an early riser. We are waiting for his autism assessment actually and possibly changing the medication to another (I can't think of the name) but he's paed consultant reckons it's easier for children with autism.. he's had motor and vocal tics since he was 4 years old, which seem to be happening more regularly since the medication, rather than coming and going. My sons very routine driven and doesnt handle change well, most things need to be on his terms and his obsessions and hyper focus dominate our household 😅

Just checking in. Nice to see this thread.

DS12 has ADHD. Also verbal dyspraxia and DCD.

He’s brilliant and we are so proud of him. He’s had some hard times, but I feel that we understand him so much better now (and give him a break) which helps us all.

Life For DS sometimes seems like an endless game of Whack-a-Mole. We sort out one sticky issue or get help with something, then something else pops up.

This year Year Seven transition has been huge. Mostly good but he’s shy and anxious, and hugely disorganised. However, we are so happy he’s slotted in socially (he didn’t know a soul) and has a few (quirky) friends. There’s been no bullying or unkindness. That’s such a relief for me.

That’s lovely @LaChienneDesFromages . He sounds brilliant.

I’m so proud of my DS, he copes so well - literally today his teacher says “he copes very well”.

But they shouldn’t just have to cope should they?!

I completely agree. And that’s something DH and I have reflected on a lot. The difference between ‘coping’ i.e. going through the motions, not making a fuss, doing what’s expected of you, working on the stuff he finds hard. And ‘thriving’ I.e feeling truly valued and belonging somewhere, doing the stuff he loves (however weird) and being listened to when something (that we consider pretty normal) is not okay.

We’ve not always been good at making the distinction but I think we are all getting better at it.

And in case I sound too smug, last week DS was too burnt out by a play date to go to the favourite restaurant I’d booked for DH and DD birthday meal. He simply refused, then eventually got in the car but was arsey. So in the end we turned around and came home. We were all crying, I lost my shit, DH and DD had to have jacket potatoes as their special birthday meal and it was really, really crap!

I think he must be managing his temper better with other children, as we have had no calls from school this term so far. His concentration in class has apparently improved, though he still gets distracted sometimes which is no surprise.

He has been a lot better in after school club too - really helpful and well behaved apparently.

At home, he's up and down, but less obvious improvement. He still loses his temper on the football pitch sometimes, but to be fair, he seems to be controlling himself better.

He is like your DS though. Hates been told off for anything.

Fingers crossed he keeps things going well at school, at least.

My son has just turned 5, is autistic with SPD (diagnosed at 2) and is truly delightful. I've been questioning ADHD for a couple of years now. I think it went from "is this just a lively child" to "there's something more here" between about 3 and 4. He is exhausting!

He's in a mainstream school who are well known locally for their SEND support, has full time 1:1, all sorts of sensiry supports but his concentration is almost non existent. His biggest difficulty is his communication/social interaction and he can't process or follow complex or multi step instructions. It's so difficult to unpick what's caused by what but all professionals involved in his care have highlighted ADHD.

In our area its a minimum 2.5yr wait for an ADHD assessment, but despite him ticking literally every diagnostic box and having all the evidence needed to support this from multiple professionals, they won't accept a referral until he's 6 because they "assess from 6 years old". I've tried arguing every which way that with the wait, if he goes on the waiting list now he's going to be almost 8 by the time he's assessed, they cannot give me a reasonable answer as to why they won't accept a referral now. A diagnosis and successful medication could potentially have a huge impact on his ability to access an actual education.

Has anyone gone private for a diagnosis and not had any issues with that being accepted by NHS/LA etc.?

DS has been so angry recently, it’s so hard. Any little thing sets him off, and he’s been so so mean to his brother, on loop.

Checking in too. DS12 diagnosed last summer after a very difficult start to secondary in year7. No real issues in primary but the transition to secondary was a nightmare. Fairly rigid and academic state school that in hindsight I might not have chosen but it’s considered the ‘best’ in the local area and I was naively swayed by that. Endless sanctions, detentions, constant pulling up by teachers for a mix of silly disruptive behaviour in class, mainly chatting and not listening and low level stuff like forgetting a blazer, pencil case etc. Things got more and more difficult as my son had had enough, and felt totally demotivated at school and started rebelling a bit, not wanting to go to school, was becoming rude and surly with teachers. Was very difficult. He had a tough time, had made friends but was really internalising all the negative messaging. It was a 2 yr waiting list for a diagnosis so we ended up going private as I was worried the school was trying to push him out, sure enough he was diagnosed with inattentive ADHD Since diagnosis, the school have had to put more support measures into place which have made a big difference eg a weekly key worker, movement breaks, extra time in class if needed. Things are far easier, he’s matured a bit and the medication also makes a big difference- he takes 30mg methylphenidate (equysym) which helps him to focus in class. The sleep is difficult though ie he struggles to wind down and he’s gone from being a ravenously hungry kid to only really eating a big meal at night with minimal interest at breakfast and lunch. Sometimes I wonder if the meds are worth it - he’s taking it purely to get through school but maybe the education system needs reshaping for ND kids rather than them being dosed up in order to ‘fit’.

@Fannymadams my DS’ primary is a bit like that. Not an academy or anything, it’s a normal state school, but highly rated, high achieving, and IMO old fashioned in the way they treat the DC. It’s also very big (90 children each year) and I know there’s plenty of DC who present with much higher support needs than my DS, so he’s in that middle cohort who don’t really get anything.

I'm pretty sure DS1 has adhd. But me, his dad and his sister are all ND so I don't know how much of it is just expectations that he probably is and in my head. I think my worry is that people will think I'm just jumping on the bandwagon.
He is the loveliest, kindest, cleverest boy at times. But you just don't know whether you will get that version, or the version that will wind up his siblings because he's anxious or bored, or say something hurtful to his friends because he has no patience for them when they don't see his point of view or dont want to do what he is doing. He is like a duracel bunny, always up trees, or jumping on the bed, making animal noises and running around. He is physical to the point of bullying with siblings and friends. He has to be out and doing and with people all the time. He didn't sleep through until he was 5 and even then was up for the day at 4am. He will argue for the sake of arguing and refuses to do what he needs to do. It's exhauting. For both of us. And my 3 year old is going to be exactly the same.

Just marking place. DS1 age 15 is diagnosed though honestly not experiencing much trouble with his ADHD currently, except for endless procrastination.

I was diagnosed myself as an adult. Which is why I asked for him to be assessed.

Then I have 5yo DS2 who like you OP is probably more ASD but query either currently. No assessment yet. Just started speech therapy and been given some "homework" of games to play to help with attention and concentration.

And 2yo DS3. He's just a two year old (love this age, but they are agents of chaos!)

My DS is just exhausting me at the moment. It’s rudeness, silliness or aggression. He pushed his younger sibling down to the ground today, by the throat. Disgusting behaviour and I have no idea how to “punish” it.

How much do you know about sensory processing and dysregulation in general?

I don't think pushing a sibling down by their throat is OK of course - but I have found learning about these things extremely helpful in terms of bringing the overall environmental stress level down and enabling DC to be more regulated which does lead to less of this kind of thing.

IME there is not much effect in punishing it and I am very cautious about the unwanted effects of punishment ie resentment/reinforcing an image of "I'm bad" etc. While also wanting to be clear about what is/isn't acceptable. Gah it's a minefield!

What did you end up doing in the end?

Both mine are asd and adhd although youngest more apparent. We are trying the final medication because none of the others helped.
I'm a my wits ends. Since being diagnosed as peri menopausal and hrt not working, I'm now wondering whether I'm also adhd ( inattentive). My mood of flat, I can't be arsed to do anything and I'm so low. I won't but tempted to try some of my sons old meds to see if they make a diff. Thanks to my gp fucking up paperwork, I thought I was on a waiting list for diagnosis via RTC 11 months ago. Turned out they didn't send it all so now I'm back to square 1. The whole thing is shit and exhausting.

I find the dysregulation and sensory processing an absolute minefield, to be honest. I’ve tried to understand it but I can’t. In the moment, DS was furious at something his sibling did (very minor, not to him obviously) and that was his response. I find it so hard to know when he’s dysregulated, if he is, what to do about it.

He was just punished. No screens. Lots of talkings to as well.

Hand hold to all as we've had a very rough week with DD14. I have days where I'm desperately sad her life isn't less fraught. Everything is hard. Exams at school and getting her to do revision a battle. So bright but not doing well in tests. Getting overwhelmed and refusing other stuff.
School don't see it all but tonight she refused to go to a club she loves and spent 30 min on the floor and then 30 mins locked in bathroom 😭

Checking in again. We’ve been up and down, it’s been ok for a while as we are making an effort to try and accept DS’ feelings but it’s hard going when he’s still being so verbally rude sometimes.

Is this an ADHD thing, or just a 10 year old boy thing? When DS is clearly feeling a bit socially anxious, around particular classmates/parents, he almost goes to the extreme to get a reaction - just now we saw a friend who he was very close with in the past but they’ve grown apart, and she and her mum are quite prim and proper. And straight away he wants to talk about a song where they say a swear word - I think it’s his weird way of trying to seem cool, or get a reaction, but it’s just so inappropriate. It’s probably not with all classmates so wondering if this is a girl he has a bit of a tween crush on and he just wants to impress by coming across as a bad boy!

As we are almost a year on I thought I’d revive/ check in on this thread.

How Are all my ADHD parent brethren’s, old and new?

Mine is almost 9, still unmedicated (thank you NHS for leaving us to rot 19 months on since diagnosis) and currently is even more difficult to manage. At home he is very often obnoxious, hyperactive and in people’s faces, and trying his very best to wind up his parents or his brother. He also gets very very angry, has started being nasty verbally (I hate you, you’re the worst, nobody likes you) and this morning pushed my DP, so I’m dreading that physically violence is going to start happening too.

I get very little out of school, but whilst I don’t think he’s great, he’s not horrendous. When he’s not doing all the above at home, he can be very nice company, he likes playing chess, cuddling up with a story, reading, Lego, watching nature documentaries.