If you have a lovely older child/teen with asd/adhd

[pandarific]

What parenting approaches do you think helped you raise them to be lovely? By lovely I mean: sweet, polite, pleasant to be around.

I am struggling a bit with my 5 yo DS who is very capable however is being defiant, showing aggression and doing a lot of demanding things without asking nicely ‘get me this’ ‘I want that’ as well as teasing his little sister - fairly age typical bad behaviour I know but it can be extreme and trying to contain bad behaviour when out etc is exhausting.

he is in a great school which is very asd friendly and we have the forms for a referral. ND is in the family and I am too most likely. teacher is fond of him, he is popular etc so I’m not too worried about the school element.

I just want to know I’m doing the right thing in general when parenting him, which is: validating his upset, allowing him space to calm down, coming down like a ton of bricks on any violence, making him repeat requests for things politely, etc etc.

I’ve ordered a course from Dr Becky for deeply feeling kids with a will of iron which looks good, I’m working on not losing my cool when he’s eg refusing to do something he needs to do (put on school clothes) and just holding the boundary - ie hits in the park he gets removed from the park until he can show he can behave well.

Any insight on what you did to help your child grow up well would be really appreciated, feeling fragile right now as I’m unwell and had a difficult weekend.

Hi OP, I'm sorry, I seem to have missed that you were updating the thread and asking for more help.

I think it's probalby useful to go back to @BertieBotts various comments and suggestions as she really does lay so many things out so much better.

The most relevant thing to me I think is that I think you may need to lower your expectations a bit. If he can't cope with family events, then he needs a break or you need to prepare him differently in advance and be prepared to let him disappear or whatever.

I think your sister is impacting your thinking - it's not weird for 5 year olds not to have much empathy. For a start, if you think about narcissism - it's often referred to as being a condition that happens because the brain doesn't mature correctly, often due to childhood trauma. So yes, children are almost ALL narcissists, the trick is to help their brains continue to mature so that they grow out of it.

Your DS reminds me a LOT of the DD of a friend. The reality is that she has ASD and ADHD and her behaviour is still challenging (she's 11 now). Things are slowly improving. But yes, her parents (mum mostly) have had to FIGHT every step of the way and they're now all hoping her new school - a special school - will make a difference. You say you're on the referral path but it is worth getting on some Facebook groups for ND children in your area to see if you can get any tips on how to move things along at all.

One thing that jumps out at me is your DH. You say you're the breadwinner but you're also the one doing all the parenting and worrying about this? this can be hugely problematic. In my friend's case, her DH is a little bit useless and doesn't understand the issues really BUT he fully accepts that she is focusing on this so she is a SAHM at the moment AND when he's asked, he takes on whatever is necessary because she can't manage it all.

in my case, with fairly minor ND in DS, I am like you - the breadwinner AND the one doing all the worrying and planning. I eventually wrote DH a letter to tell him how I was literally breaking and I needed him to step up. it did help and while things haven't transformed completely, huge changes were made. eg, he hadn't engaged at ALL with the various professionals and reports we were getting. That absolutely drove me mad as how could he work with me to adapt behaviours if he didn't even know what the recommendations were?

Oh, and regarding screen time....

I don't have the answer here. I think you have to take a long hard look and be completely honest with yourself - is the screen time helpful or harmful to him? For example, for DS, actually, a fair bit of screen time is helpful. I was just rereading some notes I made about him when he was 2 and was reminded that actually, the whole wind-down-with-bath-book-story-cuddles before bed thing was a completely DISASTER for us. he did BETTEr if he was allowed to move around and/or have a screen. DD on the other hand, needs at least 30 minutes of no screen time before sleep.

For us, we had a generally unlimited screen time policy but with one massive proviso - screen time was not allowed to come before other things. So, if chores and homework were done, and we'd been to our activity for the day, then sure, go play on the iPad. But he tried a few times to resist going to swimming or whatever in favour of screen time and that was a hard no.

Also, to that end, I learnt early that I needed to get DS out the house relatively early. Before he "settled" in as it were. So if I did that, he'd be out and about, busy, having a good time etc. Then, when he came home, he'd burnt off some energy which was good for everyone AND if he then wanted screen time, I took the view that it was completely fine.

Unfortunately, my SIL and BIL have NOT absorbed this lesson and they are having similar struggles to you (but without the introspection or making the effort you are to fix things). SIL is always bleating about one nephew's screen time but can't seem to understand that if she doesn't get hi out and about, he's going to default and then not want to do anything. I have started proactively inviting them over on Saturday afternoons because he gets up early and goes to his football match on Saturdays. He a LOT less manic on Saturday afternoons.....

Thank you @NotLactoseFree for your posts!

Luckily DH is wonderful. He has severe dyslexia and was through the school system with lots of struggles and is really helpful about SEN things and at calming me down. I worry about it on here primarily because I need somewhere to get my thoughts out.

I actually went back to work full time rather than 4 days when DS was 3 and DD 1 because a) we needed the money and b) I absolutely could not cope with them both at once, so SAHM is definitely not for me, sadly.

I think you’re right about the FB group, diagnosis is 18 months apparently and I want to go private but I’m not sure of the implications on access to therapies and so on - we got to the top of a waiting list for a local place which does OT and SEN support and ABA and all sorts but it was £ just for an initial appointment and then 90 on a weekly basis going forward. I think though we may have to find the money.

I don’t think DS will require special school as he is in a great inclusive mainstream at the moment and they are able to manage him well. Who knows, but he’s academic so hoping he’ll be able to go with mainstream with a few adaptations.

I think 5 is quite early to be predicting anything re school.

My thinking evolved a lot between 5 and 10. Secondary is v different to primary.

We've had no issues arising from our ASD/ADHD diagnosis being private, by the way. We did manage to get an NHS paediatrician to rubber stamp it a few years later when we finally got to the top of the waiting list.

Just make sure anyone private is following NICE guidance.

And be kind to yourself. This stuff is hard. People who haven't been there often don't get it. Family members included. I've had to ditch expectations of any real support from mine.

I think you’re right about the FB group, diagnosis is 18 months apparently and I want to go private but I’m not sure of the implications on access to therapies and so on - we got to the top of a waiting list for a local place which does OT and SEN support and ABA and all sorts but it was £ just for an initial appointment and then 90 on a weekly basis going forward. I think though we may have to find the money.

Having gone private and knowing others who have, you're right that there can be some delays in accessing support and therapies this way, but it's certainly not completely the case. it's also a fact that many therapies are provided on a fairly low-key or limited basis even if you do have an NHS-led diagnosis so many families will still be accessing things like additional OT or other support privately.

In our case, we are still paying for everything related to DS' ADHD but that' because we can't get the meds quite right. Hopefully in the next few months we'll be swapping to shared care with our GP - who has already confirmed we can do this, but only once the meds are stabilised. We'll still need to pay for 6 monthly reviews by the specialist.

My friend pays for the vast bulk of her assessments etc for her dd for similar reasons - the delays have been so long etc. but they have had some asesmessments and support as a result and/or separately.

My 2 DS's had ADHD and I was very firm with them both. My elder son also had motor and verbal tics and absolutely no filter. I made sure they both had lots of physical exercise every day even if it was wet. I took them out swimming where they'd swim up and down for an hour, I bought a trampoline because the consultant told me 20 minutes of bouncing in fresh air before school would help them to focus on school. I held off on medication for elderly son as I was so worried about side effects and he was also on medication for his tics. In the end I relented when he was 11 and he went on to Ritalin. He had to take it after food because it suppressed his appetite. He tried the long lasting types but it didn't suit him. He did improve a lot on the medication. His teachers told me they had always known he was bright but he couldn't apply himself. On Ritalin he could concentrate and went from 4th Maths set to top set over about a year and a half. Each time his set had a test he scored well whereas before medication he did badly. At his most challenging I wanted to kill myself because I felt so bad I was not coping and felt like I was failing them. Then when his younger brother who was 8 years younger was diagnosed at 6 I cried my eyes out. I had suspected he also had ADHD but had hoped desperately he didn't have it. My younger son did well at school because he was medicated from 6 years old. Both DS's improved a lot after puberty. Their consultant told me this might happen but tbh I thought he was just stringing me along. My younger DS did A levels and got good grades. Neither DS wanted to go to Uni. My elder DS is still very impulsive and not too good with handling his money but he has a job as a Class 1 lorry driver. He likes it because he's in a different place each day so he doesn't get bored. He's buying his own house and he has a lovely long term gf. He says he doesn't want any DC because he's worried he might pass ADHD on to a DC. His gf is ok with this as she already has an older DC. I'm hoping they get married in a couple of years. My elder son sometimes spends too much and then borrows money to get through the month but he always pays it back and he's much better than he used to be. My younger son did not have such extreme ADHD. He's never been as wildly impulsive as his older brother. He's also buying his own home. He's actually a good saver. He works in a warehouse for not a lot more than minimum wage. He says he can't handle too.much responsibility. He's much better at budgeting though. Both boys are caring, polite, respectful and considerate. I'm proud of them both. One incident sticks in my mind. I was with their consultant complaining about how my elder child had cut his bedsheets with the blade from a pencil sharpener of all things and my younger son had been chewing his wooden bedframe. Their consultant went quiet then told me that a young boy he saw earlier that day cuts himself not bed sheets. I think that's the point I accepted my DS's as they were and stopped despairing of their behaviour. I was told as both showed signs of addictive personalities I should be very firm on gaming time as it is easy to fall into addiction behaviour. I followed that advice. When both DS's were at their worst I couldn't see an end but there is light at the end of the tunnel. Lots of physical activities to wear them out.

I'd say our approach has been, if it's not urgent and there's a chance the state will pay for it, then great.

If it is and they won't, or it's not the right kind of thing (like the NHS don't do sensory OT, for example), then private it is.

ND/SEN issues are very very stressful on marriages and sometimes you need help now. Plus there are wait times for private services these days.

Of course we are very lucky to have had the money. SENDIST did refer to what we'd spent in a tribunal judgement. They felt it was evidence of unmet need.

Also everyday starts afresh. Don't carry over from the day before. Start the day positively. I used to say go and bounce for 20 minutes then it would be nice if we could go over your spellings for a couple of minutes.

DS was hell on wheels until around age of 8. Couple of exclusions from school, I despaired. He was diagnosed with ADHD but really started to settle down, had an amazing teacher, school were patient and supportive. He is 15 now and in the last couple of years we have reached the point that other parents are jealous. Not stellar academically, but lovely reports like kind, polite, enthusiastic.

There is definitely an element of personality. But keep doing what you're doing, be patient but have boundaries and make sure they know they are loved and forgiven for the bad days.

Without sounding negative but a formal
diagnosis won’t change his behaviour, I would parent using asd/adhd techniques regardless of a formal diagnosis or not. Schools should also work with need not diagnosis so I wouldn’t stress about having to wait 18 months.

Of course a diagnosis doesn't change behaviour but it gives you some reasons and that's helpful if you tend to blame yourself.

Schools are a law unto themselves. Sometimes they do very well. Often it can be extremely useful to have something formal to show them. It was a turning point for us.

The school where I teach is quite good at responding to needs not diagnosis, but when resources are limited, they are focused on EHCP because that's a legal document, annual reviews are required, etc etc.

I’m not in the UK btw for those mentioning about NHS.

I want him to have access to everything on offer tbh and at least if he’s diagnosed we don’t have to find almost 400 quid a month on top of childcare for DD and wrap around for him. That’s why I’m considering private diagnosis.

images.app.goo.gl/1sYCYawiX6jcac8b9

This is quite handy OP if you haven't already seen it.

Spending time understanding and sharing their 'special interest' of the moment, be it dinosaurs, rocks or currently fish/fishing/aquariums. To be fair, it's actually made all our lives more interesting and got us doing things I would never have thought to do before.

Talk a lot about the impact of behaviour on other's feelings and helped him understand how feelings can affect others behaviour towards him - eg sister is feeling sad because you hit her on the head with a pillow and now she doesn't want to play. What could you do to make it right?

www.pdasociety.org.uk/resources/helpful-approaches-for-special-occasions/ this is handy too.

Shamelessly place marking as I have an autistic 5 year old too. Very sweet and loving but the advice on here is great! I’ve took some screenshots.

Whats worked for me: never take anything personally. I think we parent worse when we think we’re messing up. Sometimes we do mess up, but that’s ok. The main thing is to check my responses and see if I’m reacting to a sense of my own failure, or second guessing myself.

Discussing and labelling behaviours. Listening as much as possible, but also not trying to get them to talk when they don’t want to. Discuss how horrible feelings are normal, they don’t make you bad, what they feel like physically.

Trying to make sure as much of their life is filled with things they are good at and enjoy, make sure they spend as much time as possible in environments which promote their self esteem.

Being really aware of calming strategies and promoting those as much as possible. Dd went through an awful time in year 9 at school. The best thing I did was spend a lot of time each weekend curled up on sofa with her watching favourite TV series on a loop. When I couldn’t do that, I’d bring her tea and biscuits to make sure she knew it was ok to do it.

I think other posters have covered a lot of what I would say but I will add that reward charts, v especially anything where totals could go down as well as up caused a massive amount of v stress and upset for my kids especially DS1, my most volatile child who couldn't cope with failing to meet his target ( don't get me started on the spelling scheme at school which he never seemed to move up levels on l, spelling homework was hellish!).

I strongly disagree with people that say a diagnosis doesn't help. If you don't have one, that does not mean you can't do all kinds of things to support him. And you should. But a diagnosis brings a lot of benefits. A short list just in my own experience - 'm sure there are loads more.

• easier to access support, particularly in school. DS' high school was broadly supportive from the start, but after we got a proper diagnosis, we were able to ramp this up. For example, for issues around detention/behaviour where their expectations are just not practical for a child with ADHD. As he gets older, there will be some things that he might be able to access that are EASIER to do so with a diagnosis (not guaranteed in his case) eg extra time in exams, and the option to use a keyboard.
• Once you are getting support, it can be better tailored. DS has SPD as well as ADHD. We've known about the SPD for years. But some of the support we were given was specifically for SPD and actually, in retrospect, we would have had different interventions if we'd already had the ADHD diagnosis.
• Similarly - less judgement from other parents. This is a slippery slope so you do have to be carefu - everyone has met that parent who happily watches their child beat on another child while serenely saying, "don't hit darling" and then to the parents, "he has ASD and lots of big emotions." so that is bad. But on the other hand, being able to say that his terrible sleep is an ongoing issue that the DR assures us is part of his ADHD and we have to implement different strategies, has taken a lot of the pressure off me.
• Specialists can and do make useful recommendations. I have learnt a lot about how to parent DS and how to adjust things at home from those reports and discussions. Some of the things are things I knew, or have learnt already, but often they're new.
• I have also been massively reassured. When I was tearing my hair out at one point, the dr very calmly said to me, "I see you wear glasses. Do you blame yourself because you cannot see without them? Do you think it's your fault that you can't see without them? Do you think if you just tried harder you'd suddenly be able to see without them? That's how you need to see DS' ADHD." My god, that was helpful.

I had a similar moment at the ASD assessment. They said we had done well as parents! We had been feeling like the worst parents in the world for several years at that point.

He sounds quite similar to my younger DS who is 5.5.

If you don't know his stress signs then it seems like he is being set off by nothing at all or really tiny little things but I am learning to look and see that he is so tense a lot of the time.

Can't remember what I wrote to you before. Hold on.

I have had two friends who have children who are diagnosed with ASD.Those children are now late teens and one is mid twenties. One friend had two children a boy and a girl, her boy needed a lot of help, he had been non verbal for quite a while but I didn’t meet him till he was about 8 and was talking by then. She was very firm but fair with them from a very young age and had strong boundaries. Lots of explaining why things had to be a certain way. She did tell them off. She also kept chickens and always supervised but got them to help to feed and care for these chickens. She made them help with other stuff. They are lovely kids.

The other boy was never given boundaries, he was never reprimanded or told off and he rang rings around his Mum. she did everything for him. He did nothing for himself. When out once someone called the police because of the way he was verbally attacking her. The way he spoke to people was dreadful, he spoke down to people with an air of superiority.

I think with all parenting advice it’s always the same all children are different so their reactions can differ. But any child that has everything done for them no rules and boundaries ASD or not it’s not a good idea.

OK, a lot to take in, so I will try to throw some thoughts together probably in a bit of a chaotic order (sorry, that's my ADHD).

Screen time - it's such a roulette here - if you can get a handle on his body signs to try and work out if he's calm or stressed, then you might be able to work out what effect the screen time is having on him. Some ND children self-regulate or self-stim with screens but sometimes they are dopamine seeking and they will be sat watching it in this wound up state. Being still and quiet does not necessarily mean that internally, he is calm. Try sitting with him to watch - does he feel tense in his body, is he pushing against you and wriggling, how's his breathing, does he cuddle into you? Do you notice different effects with different kinds of TV - fast paced vs slow, familiar vs new, scenes of conflict/fighting/rescuing/danger can be stressful (even though they are drawn to it) - is there so much visually going on on-screen, are the colours bright and saturated or more muted/realistic? Better or worse with iPad than TV? There is an instagram account called amazing.autistic.abby who had some iPad app suggestions which they like for their autistic daughter. Mostly paid - all the subscriptions totalled up to a ridiculous amount TBH - but might be worth a look if looking to change screen time effect.

I did find with DS1 that absolutely any negotiation or wiggle room in screen time would backfire as he would spend the entire day OBSESSING over whether it was screen time or not yet. Having blanket rules about it's allowed/not allowed at certain times makes this easier because there is just no discussion.

You mentioned your own ND - ADHD or ASD or something else? Medicated? Perimenopause? I do think you're probably having a very proportional response to stress so I don't think there is necessarily anything "wrong" but I am wondering if there's anything which you could get in place for you which might help.

Can't remember if I posted it before but there is this amazing book called When Your Kids Push Your Buttons - it really really helped me.

This may help though I'm a bit reluctant to post as it's paid but you know what - in case you're at that point - I haven't done this particular course but I have done the free primer for it and would definitely consider paying for the full one if we were having to wait so long. https://theotbutterfly.com/bootcamp/

For emotional regulation you basically have three angles to address this from.

Teaching him self-regulation skills - you need to find ways to work these in at positive/fun times, rather than expecting him to learn them in the moment, though. There is this incredible program for schools, called Conscious Discipline. You can adopt a lot of this for your home actually - look at their website/youtube or look for podcasts where the founder Becky A Bailey is talking. I think this is brilliant because what they do is basically teach a load of self-regulation concepts to children in the form of things like action games and songs. They make it fun so that when children access these things in moments of stress it doesn't just feel like this WTF stupid thing you are making him do that he doesn't want to. I also like the way all their tools are designed so that teachers can use them as prompts to remind THEM what to do/say to the children - this works for me too as a parent.

This talk is also great, as is everything on this website/her Facebook page is useful if you are on there, you might not agree with every single post, but there is so much helpful stuff. https://www.occuplaytional.com/2024/02/12/feeling-all-the-feelings-webinar-hosted-by-neurodiversity-ireland/

The second angle is working on your own coregulation skills, which means learning how to self-regulate your own emotions in times of stress - which is REALLY HARD. Particularly when you're struggling with these fears for DS and your family. If you can access therapy at all, preferably trauma-informed, this will probably be useful for you because he is going to be picking up on your body language too and it's just a lot to try and not go into this state because you'll be reacting to him and he'll be reacting to you and it is going to go around and around in a feedback loop. This is probably the hardest part. Reframing can help, but probably isn't going to override deep-seated fears and memories and learned protective responses. You can do some learned physical tricks to present a regulated front in the moment for DS - get low and slow, get close, speak quietly, slowly, calmly, soften your eyes/face, slow your breathing very deliberately and obviously, drop any expectations of him doing whatever it is that you asked, focus on preventing harm and getting him back to a calmer space.

The third and arguably most important will be reducing his stressors overall within the environment. That is tricky because you might not really know what exactly they are. But in general you can try reducing demands, reducing sensory input (e.g. background noise, bright or changing light), creating separate play spaces for him and his sister, keep meals close together and "safe" foods you know he's likely to eat, experimenting with adding in some sensory stimulus to see what helps - this might be a good starting point? https://www.occuplaytional.com/2023/12/04/a-proprioception-primer/

Something which was quite helpful for me was a suggestion by the OT Butterfly in the free version of the course I linked above which is to keep a diary over a few days. I used a sort of "Zones of regulation" shorthand and just whatsapped myself, using the coloured heart emojis at the beginning of the text to denote what "zone" I felt he was in which I denoted as follows:
💚 regulated/appropriate energy for the situation
🧡 dysregulated - being "naughty" or silly or disruptive
❤️ meltdown/explosion
💛 what I started to see as "subtle" dysregulation signs, ie he's not actually doing anything wrong or that I could put my finger on exactly, but it's giving me that warning sense because I can tell he's ramping up.
💙 this is for sleepy in zones of regulation but I didn't find I used it very much.

After the heart, I would then just write a few words about what I noticed (e.g. stiff muscles) and/or what we were doing, or what the situation was (e.g. playing trains together; or - hit brother because brother took his lego piece).

Because it's whatsapp, it has a time stamp and it's easy to access as my phone is to hand. So I could look back over the log I'd created and see:
There are actually green hearts. I had this sense that he was NEVER calm but that was not exactly true.
What kind of activities tended to give him more green hearts
What kind of experiences tended to lead to more yellow or orange
That there are times of day which typically have more green or more yellow/orange.

Self-Reg by Stuart Shanker is also very good though I didn't really understand it just from reading the book - I had to listen to a lot more of his talks, podcast interviews etc. Basically for emotional regulation I've just done stuff like run a search for any terms like this on a podcast app and listened to anything I could get hold of and pieced it all together bit by bit. I think the most useful thing I got from this is the idea that stress is, biologically, anything which makes the brain burn glucose, which means that you can have a sort of mental image of a brain which has a fuel resource from which several different processes all run off.

When you're running one process very very hard, for example a child who has sensory issues might be running their sensory processing very hard, it reduces capacity in all the others so social, cognitive, empathy, problem solving etc. And vice versa. If they are working very hard at social because social situations are stressful for them, it may reduce their capacity to process sensory input.

Reduced capacity means both that they are less able to do it, so for example a child who seems fine at reading in one situation when they are totally calm and supported, but in another situation where there is stress on their other systems, it is overloading their overall capacity and they can't access the energy they need to concentrate on reading. The teacher/parent might get frustrated because they know that the child CAN do this and not understand that in this scenario they can't (because they need more brain fuel which is currently being diverted to different processes).

But it can ALSO mean that they are getting pushed closer to that pressure-cooker scenario where they blow up. Where for example a sensory input like clothing is something they can cope with in one scenario, but another time when they have stress build up from other things the act of putting a coat on feels so intolerable to them that it pushes them right into meltdown.

The accounts I follow online which talk the most about self-regulation are occupational therapists. Maybe there's a possibility to access private OT?

Hope you are doing OK, OP. I wanted to say that learning how to parent kids who are out of the norm takes a lot of time and effort. You won't solve all the problems at once. Some only time can solve.

Well @BertieBotts I am copy and pasting that to read over carefully in sections because I'm about to refer us for some private OT here to see if I can get a handle on some of the sensory issues. I've been delaying to see what's going to happen with my tribunal for EHCP but I think I'm going to go for it. V useful to hear from someone further down the road.

In my dream there is some kind of drop in place parents can get this kind of advice.

In reality thank God for the Internet!

It won't apply to you but I think the biggest impact has been being a single parent and DD being an only child, means she's only ever had one set of rules, one set of expectations and no siblings to compete for attention or who are spontaneous and upset her routine. She is also extremely compliant and won't ever break a rule which makes her easy to work with.

In terms of what I did when she was younger - observe the pinch points, notice the triggers, building in rest time, preempt sensory overload and being prepared with noise cancelling headphones etc.

If going shopping means they run in to the clothes rails and hide you lay out your expectations at their level before you enter the shop everytime and get them to tell you the rules.

If they forget things then a visual reminder.
Factor in extra time for transitions like getting shoes on.

If on a day out factor in physical time at park but also rest time back in the car or in the shade somewhere for 30 mins.