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.

This is all so familiar! DS also plays football and is hugely fight or flight. The other day we left training after 5 mins because another kid was rude to him during a tackle and he just couldn't take it. A year or two ago he'd have hit them. Oddly enough he has Big Match Mentality though and tends to be able to brush stuff off much more easily when they are playing against another team?!?!

Sounds just like DS 😁. He does brush off a surprising amount in a match, but every so often you can see him getting wound up. The coaches occasionally have pulled him off the field for a few minutes to cool off when it looks like things may be heading south, which has been great.

Honestly you mustn’t feel bad, I know our guilt as parents is never ending. But it’s only now that it’s really a “thing” to be recognised. DH and I have joked between us when I’m in a good mood, otherwise I lose my shit at him for years about his own traits, we called him Mr “Do it later”, lateness etc, had a good chuckle at his school reports where he was never disruptive but constantly daydreaming, in his own world…only around the time of lockdown, and just afterwards, when we started considering that DS probably had ADHD (I had always felt something wasn’t right since I had started being pulled aside at nursery when he was 3 for his disruptive behaviour and lack of listening) but had assumed ASD as I really didn’t know anything about ADHD. And then, ONLY when we realised, actually DS probably has ADHD, did we put the pieces together that DH does too. I suspect the traits are also on my side of the family although no one has suffered as adults particularly so I don’t think it’ll ever surface.

I have a few friends who are 100% on the autistic spectrum or have ADHD, not diagnosed but now that I know so much about it from DH and DS, it’s fairly clear. But it’s so easily missed.

@Duckingfun I’m so sorry life is so tricky for you at the moment. Hopefully this thread will be a place where people feel they can offload without judgement.

DS is going to be 9 this year and I still have to physically take Lego and toys off him so that he does the most basic things I’ve asked - shoes on, coat on, for school. And he will try and grab something else in the meantime. I find his distraction very very taxing, but his defiance makes it so much worse, I find it very triggering.

Familiar! DS plays football (he’s not very good, but he enjoys it and bless him, has come on a lot - a year ago he was standing around in his own world, and he actually scored a goal in a Big Match last week!) and at training, he can get very uppity about certain tackles etc. He’s never been hugely explosive in that sense, physically anyway, his aggression is verbal and we get a lot of shut up/idiot/stupid, but he will get really affronted. I’m grateful he doesn’t explode physically at least, he has a friend who I’m certain has ADHD and he sounds like your DS’, much more likely to react physically.

How are your DC’s friendship wise? My DS has always had a small number of close friends, he prefers that to big groups. There is no question that the boys in his small group are neurodiverse themselves! And he’s made a couple of outside school friends at his clubs, again I know one for sure is waiting to be assessed for ADHD. Very interesting that he’s drawn to those children. There’s some lovely, placid, no drama boys in his class, and he’s just not interested in them, and probably vice versa.

Hi all 👋 my 7 year old was diagnosed with combined type ADHD last year (it was very expected) his consultant described it as severe.. I always knew there was more going on and fought hard to be heard and get us some support. It took us years to get here although i know they dont assess for ADHD at a younger age i just knew. He's currently on medication which has hugely improved his access to school, although the medication has made his tics more obvious and the anxieties... we also very much suspect his autistic too and are on the waiting list for assessment.

I also have a younger daughter, who isn't as "obvious" but I do suspect adhd with her too.. I'm in touch with her senco for some support at school but we don't have a referral for her yet. Kinda watching and waiting to see how she gets on.

I'm also likely to have adhd and waiting for my own referral (I do believe dad is too but he's not massively interested in diagnosis for himself)

My sons very full on 🥴 but we are in a much better place than we have ever been which I'm thanking the medication for.... I can't believe how I coped before! (I didnt) lol.

DS(10) has ASD and was diagnosed with ADHD in October. We are currently trialling Medikinet and doing the whole titration thing. He's on a very low dose at the moment and effects are subtle. I think we need to crank it up a bit.

DS has some temper and impulsive behaviour but inattentiveness is the biggest issue. He scored 9/9 on attentiveness in his diagnostic test 😬 For a long time we thought this was part of his autistic profile but now realising he's got a lot more going on....he finds focusing on anything EXHAUSTING!

My DS does have friends at school, mainly the ones that like football. Although the trouble he was in at school last term largely involved some of them. There was a spate of parents complaining to the school because DS had been rude or physical, and it was hard to get to the bottom of his behaviour because he just gets sullen and angry when questioned.

It did get to the point where it started to feel like a bit of a campaign against him though, which was difficult.

He is rarely invited to parties or playdates. While I have ADHD-like traits too and our house is not often tidy enough for me to feel comfortable inviting people over (something I am working on at the moment), I do think it's odd that he has hardly ever had a first invite, even if he didn't get invited back until we reciprocated.

Sadly, I suspect he has a bad name now among the parents, even though they're friendly enough.

So happy to see this thread.

My DS16 was diagnosed when he was 6. Things got easier around 12-14/15

The last six months have been hell. The last few weeks have been worse than hell, I genuinely dislike being around my own child.

1 hour battle/argument this morning just to get him in the shower 😭

Interested to know if any DC only exhibit adhd behaviour at home and not at school? I was late diagnosed and it totally explained my life- inattentive type. Suspect dd 8 is the same but aside from being very chatty and called 'crazy girl' by some.classmates, she is very well behaved at school and school say no signs of of it.

My DS can be very intolerant of children he deems 'weird' (not to their faces, we are doing a lot of work on this) and doesnt see those traits in himself. As a result he only wants to be friends with the cool kids. They seem to tolerate him and they get along OK but I've noticed recently that playdates aren't reciprocated and as parties get smaller he isn't on the list any more. It's quite heartbreaking when he comes home and says X and Y have had a sleepover and why doesn't he get invited etc. It might be easier if he did fall in with the other ND kids who might accept him more as he is. There's no easy option for them is there?

DS is the opposite - he can be a pain in the arse at home but is generally happy go lucky and gets on. School is like a pressure cooker for him. I think girls and boys with ADHD can present soooo differently though, I've definitely heard this is a thing for girls.

My DS definitely doesn’t mask, which I think is why he was flagged so early. I think school’s interpretation of “fine/no signs” is subjective too. I was chatting to a fellow ADHD parent recently and her DD’s teacher says the DD is “fine”, even though the mum then listed a load of behaviours very similar to my DS - getting up from their seats and wandering around etc - so clearly the DD was exhibiting the behaviours at school. You have to be quite persistent, no one at DS’ school has ever come out and said they agree he has ADHD or whatever, it’s all been lead by us. His teachers have never denied the behaviours though, such as wandering off, not following instructions.

@burntoutnurse I'm so sorry to read this. I worry about feeling like that about DS one day.

I didn’t have any real concerns about my DS until he was in a pre school setting too, age 3 onwards. He was a delightful baby and 2 year old. Age 3 he definitely developed an attitude and defiance, but at home I didn’t think it was outside the level of normal. He’d been at a private day nursery one day a week up until then too, and they’d never struggled with his behaviour, I had lovely feedback about him as a toddler as he’s always had very good speech and is a friendly, curious little guy.

DS has inattentive type of ADHD, has been on Concerta for a while, it didn't even scratch the surface. For those of you who's seen positive change with medication - what was it?
He's super bright boy, but no concentration at all and started struggling really badly and falling behind after moving to secondary

@nearlylovemyusername when was last review? It's based on height & weight too. We were 18mg now 27mg

My ds17 has an asd diagnosis but is likely adhd too, we just didn't seek that because didn't consider it, but everything I have learned suggests he has both. Because of that we never considered medication when he was younger and now there is no point, which I often beat myself up about. He found school very challenging, though had friends - however all his social conduct had to be "learned" and sometimes the hard way. He found it very difficult to concentrate, though just scraped his GCSEs. Now he is working, out of bed at dawn every morning, not materialistic but very motivated by earning money because I think he can clearly see the immediate gain of working in a way I don't think he did with school work. He is happy, and on a pathway. But I think parents without ND kids have simply no idea of how challenging and exhausting it is, even though when the highs come they really are highs.

@deeprealisation it was four months ago, he was on 27mg but we can't increase dose anymore because of other conditions and risks. I wonder if anyone has any experience with this type and what helped?

@Rumplestiltz it’s never too late to try medicine, my DH started this year age 40! Although it sounds like your DS is doing well. I hope this will be the case for my DS, that he’ll be motivated to work because of the money. I also hope he finds an area of interest because he’s so creative, he builds amazing Lego models, draws comic books, comes up with little inventions.

DS1 is just 16 and was diagnosed combined ADHD when he was 11, I think. He also has dyspraxia, dyslexia, anxiety and has a physical genetic condition. I suspect, like his younger brother, he also has ASD.
We're in Scotland. He's in S5 and taking Highers.
He's on a high dose of Xaggatin after trying atomoxitine and Concerta.
I'm incredibly proud of him but things can be difficult. He's planning to leave school at the end of this year and do catering at college.
He's very bright but the school system really isn't designed for people with multiple neurodiversities.
He has always masked incredibly well, that whole 'he's fine in school' thing. If it hadn't been for his genetic condition meaning he was on the NHS radar, I'd have had to fight a lot harder.

@weebarra what were the differences in medications effect? in what way Xaggatin is better than Concerta?

So the atomoxitine (I know I've spelt that wrong!) isn't a stimulant and takes about 6 weeks to get into the system. It works by increasing dopamine levels in the brain. It was offered to us first due to DSs physical issues as stimulants can raise blood pressure. It worked for a while then stopped.
Concerta is a traditional stimulant and how it was explained to me is that it pushes them to the other side of the stimulant curve. He moved to xaggatin due to supply issues. He's on 72mg. He says it quietens his brain and allows him to focus. Before he takes it he's a total bouncy ball!

DD9 is awaiting ADHD and possible ASD diagnosis

She has terrible anxiety as well

All meltdowns are directed at me

She has huge insecurity around me because I have trauma that causes me to disassociate during meltdowns

I love her but I don't like her sometimes and I'm scared I'll lose her so at times I feel like giving up and it shows

It's really fucking hard atm

My first counselling session is Friday. I hope it helps.

Also school are not supportive
DH isn't great

And the more I research the more I wonder if I have asd.

Ds is 6 and diagnosed classic ADHD.

hes got toileting issues, a speech disorder and a stammer.

its exhausting, he’s medicated but not currently on the correct dosage

I am very interested to read this. DS is 15 and struggling so much at school with focus and concentration.
At primary he was assessed quite a few times but not given any specific diagnosis, just a lot of ‘difficulties’ - so we didn’t pursue the medication route. However now it’s GCSE time it’s really becoming apparent how difficult he finds it to concentrate and I think he is just going to scrape through. I am feeling guilty for not pushing for the ADHD diagnosis.
Also we are having to teach him social skills too.
I really worry what he’s going to do next.