Extremely bright, extremely difficult child.

[12345NumberBlocks]

I want to know what your extremely bright, ADHD or AuDHD child was like? Particularly round the age some behaviours stop being ‘normal’, so age 5, 6, 7 I suppose.

Really want to hear examples as opposed to a whole big story from us, but my 5 year old is both very bright and very, very difficult. His maths skills are off the chart, reading is effortless, his verbal skills and reasoning are adult like. He has a near perfect memory.

He is also explosive, impulsive, hyperactive, selfish, obsessed with winning and in need of constant, constant attention. We are quite broken by his behaviour at home. We’ve done some parenting courses which, while useful for us, haven’t done anything to change his behaviour.

School get a toned version from him on both fronts. They are aware he is bright but not the full extent. They get some silliness, difficulty with sharing and some emotionality but not to the extent we do. They were a bit 🤷🏻‍♀️ when we mentioned neurodiversity.

Does anyone recognise this? Thanks.

We had a squeeze tube thing he’d wriggle into, a swing seat in the house, wobble cushions. Hanging upside down can be good, so a rope ladder/swing thing.

Have a look at the pda society website and low demand parenting. Also dodge the parenting courses unless they're specifically for adhd/pda children.

This sounds like my 10yo. My biggest problem is the obvious frustration from school that he's incredibly bright and could be top of his class for every subject except possibly art, which he's still good at, but he just can't knuckle down. We are over 2 years now on the waiting list for assessment and school agree that he's likely got ADHD so they manage him as such but it doesn't stop them being frustrated and parents evenings are always grim. I find it harder now that he's older because he's more likely to be judged harshly as his peers begin to grow up and calm down. He's tall too so strangers assume he's a really badly behaved 13 year old. On the other hand he is more socially aware and easily embarrassed and that can help contain him. I do think they all turn out fine. There was little or no help for ND kids when I was young and everyoneade their way in the world one way or another. You have my sympathy though.

This sounds familiar but unfortunately like @wastingtimeonhere issues have hit us in the teenage years and our child has crashed rather spectacularly out of school. I wish I could advise what we could have done differently but I don't know!

It’s really hard to tell. We still haven’t worked out if hyperactive/destructive means ‘I need more’ or ‘I need less’. The extreme sensitivity and emotionality definitely means ‘I need less’, but it’s like something in his brain just won’t let him do that. We moved house last year and behaviour was particularly horrendous for a while - I was known to just pick him up and sway with him in a dark room. He’d physically fight it for a good five minutes before calming down.

Routine is another really weird one. He definitely needs routine and school have commented more than once that he’s a child who does best with strict predictability. But equally he also seems to get bored of routine and pushes it. We hold strong but it’s a really tricky balance.

Would an OT be able to help with things like swings and weighted blankets etc?

To be honest, the main thing that causes emotional dysregulation is school. He would happily not go and 3:30pm until bedtime is just horrendous.

After school is really tricky and unpredictable. Today he was in hyper mode and just wanted to run and (hyper) shout and be really physical. Some days it’s straight into extreme negativity, crying and (angry) shouting. On those days intense 1:1 adult interaction at home over Lego will sometimes help. Those days he will refuse to do anything alone - I’ll even have to go with him to the toilet. It’s difficult though as he has a 2 year old brother who needs some attention to, which really winds him up.

Unfortunately board games and chess are quite off limits at the moment. Losing makes him go absolutely berserk. It’s the only time we get violence really.

have you seen a psychiatrist for a formal assessment? they really provide great insight. but the techniques are pretty much similar to those mentioned on the thread.

No. I’m really not sure I’ll convince school. They have children there who clearly have great need and my son is under their radar. Can I just bypass them and go to the GP? Or go privately - do these assessments even hold weight? We did the parenting courses as I just assumed we’d be blamed as he’s a lot more manageable in school than at home.

We had choice charts- a grid with activities to choose from on like hot chocolate with marshmallows, foot massage, swing, trampoline, audio book. They could come in from school and choose a thing off the chart. They’d start to learn if they need soothing and calming, or wearing out.

We used to play a game where we ‘made a pizza’. The child lays down and you pat them down into a nice smooth circle, spread on some tomato sauce, slap on some toppings, sprinkle on the cheese etc.
It’s a low demand low intensity touching, bonding, soothing kind of thing. He might like it. You can play with the tot as well, he can help.

The needing routine but hating it is probably the Audhd - as an adult it's still very hard. The best thing I've been learning is to not have to follow the norms just because others say they are how things should be done. For example I find if I want to do skincare at night I have to do it hours before I'm even thinking about bed or I can't do it.

I know that's a silly example but it's just to demonstrate how hard it can be even as an adult. Transitions can be tough, like if you think of getting ready for school as 3 steps he probably sees if as 20. If you can minimise the steps to do something that might help. Bedtime can be big in this, try changing up what you think you should do. Try seeing if he need 15 mins of running around playing to switch his brain off, or could getting into pajamas after dinner so that's one less thing at bedtime? Maybe rather than a sudden announcement of it's bedtime and go, set timers to say in 15 mins we're going to go get ready for bed and have a visual timer (if he can't tell time, you can get hourglasses for kids which work great).

OT should definitely be able to help with sensory things like weighted blankets etc..

The meltdowns after school are sadly very common. Being in school all his energy is being used to wrap him tightly and then when he leaves it's like an explosion of emotions. It's different with each child - for some coming home and going to a dark room and chilling is the way today deal, others they need higher stimulation.

Sorry if I'm just listing things at you but it's so hard as not one size fits all. I imagine you're so exhausted trying to figure it out and if I can give any advice it's that ND kids are so sensitive and aware of the emotions around us. If at all possible make sure you're getting some emotional regulation so that you can look after yourself in the tough times. It's so much worse if you're overwhelmed when they are ❤️❤️

DD1 is very bright and autistic. We don't think ADHD but it is in the family. 5-8 years old she was very difficult at home, meltdowns, freaking out over small things, school holidays were awful for us. It changed the whole atmosphere at home and was awful for her sibling. It has got better since age 8, she seems to have more awareness of her behaviour and tries to regulate it. Meltdowns are now by exception not daily occurrences.

@12345NumberBlocks

You sound like you are trying so hard.

( I used to have to sit poolside because my child was so anxious about swimming despite them wanting to do it!).

I want to encourage you to look after yourself. It's so easy to be so caught up with looking after a difficult/ different child that it's easy to forget yourself. I really regret doing this and it caused more problems in the end.

@12345NumberBlocks

Did his behavior get worse after his sibling was born?

Those non-negotiables you have implemented, walking to school etc sound really really great.

my daughter/son in law went private and it was all done properly (qualified professionals and tests) now onto shared care for the medication aspect.
i've found that the meds have made a huge difference, he's in private with more pe than state and they already had made some proposals like 1-1 time for subjects he avoids (writing), wobble cushion and due to maturity (3rd week of august birthday) had him repeat year 3 despite being very capable in most areas (which helped his confidence and behavior even though confidence was not something anyone had picked up on, but the immaturity was very noticeable). they mentioned that in later years they should seek permission to have a laptop/scribe for writing and extra time for exams. which i don't think is that controversial that schools wouldn't do that without the medical input.
but what was valuable was learning why writing was do difficult and how the mismatch between certain brain functions affects him (great at decoding but can't spell).
some school requests were hard to implement (they wanted him exercised for 45 minutes before school...) but the school rush with the other family members made it impossible and biking to school on a major road was too dangerous.

i think the full report was worth the time and money. certainly helpful to the family vs the notion of shit parenting. having a non chaotic home was impossible with the little tornado.

Thank you. I feel broken and terrified to be honest but I’m trying to stay calm for him and my other child.

Swimming is a trauma here as well. Which is ironic as he likes swimming but I think going straight from school to swimming and all that involves (dressing, being cold, hair washing etc) is too much. I also have to stay poolside despite being nearly 2 years in. He’s still in a class with 3 year olds as well bless him as he’s really struggling to pick it up. I just feel basic water safety is so important, so I’m loathed to pack it in.

He is so weird with his brother. On one hand, he utterly adores him. The baby got Bronchiolitis and needed to go to ITU in hospital when he was little and my son, who was 3 at the time was so stressed. He regularly declares he only loves his brother and nobody else. But equally he can’t cope with his brother. When the baby is toddling around or running it really winds DC1 up and he gets very impulsive and tries to shove him over or take his legs out. He is far too heavy handed with him and I’d never ever leave them unsupervised.

Sounds like much more extreme version of our 5 year old, I would say push school, ask to see the senco and ask for the educational psychologist to see him for assessment and reasonable adjustments.
The school may just see what happens there but what happens at home will become much more relevant if he can't attend school in future, so it's in schools interest to take home stuff seriously as well.
Our local authority put on various courses for school refusal etc and anyone can self refer to them and they are free, and they are super helpful even if your child doesn't fit into the actual category
Good luck!

@12345NumberBlocks I feel like I've met a similar version of your child as a 10 year old. His parents didn't get a diagnosis and I think he suffered as a result but I can see why they didn't, it's tricky when they're so bright as well.

I I think a diagnosis/assessment would really help all of you. Knowing himself, advocating for himself in the future are great skills for him to build.

Take care of yourself x

I don't know whether this is appropriate but could you film some moments or behaviours to show school to try and get them to engage? They should be listening to you really.

That sounds really, really hard.

Would one of those exercise bikes appeal to him (tho maybe they only come in adult-size..)?

Or is there a safe loop route he could cycle outside? Cycling might be good because it's very energetic but also v repetitive and quite calming, I'd have thought.

Have you ever considered home education..? I'm sure it sounds crazy to suggest you dealing with him for even more hours in the day, but if school (and all it involves) is what he most struggles to regulate himself around, your life ironically might be easier if you didn't have to force him through all that every day.

Even if just till your younger one is ready to start school; I feel like 5-8 is the hardest time as they really can be unable to regulate their emotions, they're not doing it on purpose (I also recommend The Explosive Child, and have one of those myself...)

I hope your situation eases up a bit soon. You're a great mum, and doing your best for your child.

My son is similar albeit less extreme I think. I can relate to the frequent tearing round the house omg - it's hard to understand how stressful this is if you haven't experienced it!!

We put a swing in the garden which has really helped. We used to suggest/tell him to use it when he got manic and now he tends to take himself off there himself to calm down.

At the moment, home education is a line we can’t cross. For a start, I earn more than my husband. He’s an amazing dad, so kind and patient and actually he’s with the kids more than me, due to working less hours and being fully remote. But he has categorically said tonight he just couldn’t do it, he would be utterly miserable. We also couldn’t afford our current lifestyle if I was to quit work, to the extent we would have to sell the house which would be a huge upheaval.

Im aware from my reading around PDA tonight our hands may be forced one day, but I am supremely keen to avoid that, which is why I’m going to get the ball rolling with school and the GP tomorrow.

I could actually have written some of your post. Unfortunately we are now home edding (or were as in severe burnout currently).

It is extremely hard to avoid this as some research (there isn't much) has shown that around 70% of children with PDA are out of school ultimately. I had hoped with early diagnosis and low demand/lots of support we would remain in education but no setting we could find was really equipped to deal with the complexity of our situation.

@12345NumberBlocks

I recognise the sibling stuff. The first professional we had involved was because I was worried my older child was going to seriously hurt my younger child. Mine have a five year gap.

Watching with interest, and sharing a bit of our story in case helpful to the OP.

DS is slightly younger that your son OP, but sounds very similar. DS has an ASD diagnosis as of October.
Hugely bright - speaks like an adult really, is 4. Incredible recall, maths, great cross conceptual thinking etc. When comfortable his social skills are pretty age typical, although he can be very bossy with friends and struggle with sharing.
Also has PDA type presentations that have driven me to have years of therapy and ultimately a month of what I can only describe as respite care, he was excluded from school aged four and before one of his teachers at nursery became his advocate he was asked to
leave there too - aged just 2.

Since having his diagnosis confirmed we have made changes to our parenting on the recommendation of the diagnosing consultant who said that PDA can be dialled up or down by the parenting style that parents use. We still have a lot to learn but are aiming to combine low demand parenting with clear co sistent and calmly held boundaries. It’s about reducing anxiety in the child as much as possible.
We have also made some hard and fast rules (for us no TV in the week was one that made a great positive difference) and thereby increased routine.
We have seen huge positive changes in our child since we changed our style and I don’t even know how dramatic a change it was for us- largely around the language we use, and the way in which we cue the boundaries.

Before these changes everything was a battle,we hadn’t washed his hair in about 3 months because of the meltdowns, bedtime was sometimes taking an hour, meltdowns could be violent. Very high anxiety, clinginess, needed to be in charge… etc. It was really hard. It had been off and on like this for years - then coupled with the high intelligence this resulted in no one believing me when I said ASD, and being gas-lit by several key people.

I’m sharing all this because what you describe sounds like my autistic highly intelligent son, and while you say the school wouldn’t agree that’s likely to be due to their lack of knowledge. Lack of knowledge in some schools is shocking - I had the head of our previous school tell me DS had a global developmental delay - he had that week taught himself about solar eclipses and black holes….
You do not need the school to push for the diagnosis. You can push for it via the NHS (if you can wait) or privately (if you can afford it) there are websites (such as the AET) that can support you in understanding what evidence you need to support your view that the diagnosis is necessary and others (possibly IPSEA) can provide letter templates etc to support with various applications.
The PDA society website has also been very helpful.

The “divergent conversations” podcast has also been helpful - in particular the mini series on “twice exceptional” or 2E kids. Once I started reading about 2E kids my son made more sense and my parenting became more appropriate and things have started to ease on all fronts

feel free to PM me