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.

My dd is 28. She's just lovely and I can't take credit for that.

I've got 2 adult boys with ADHD. When they were both DC it was very hard. One thing that helped me was I went in to see their consultant. I was absolutely drained after a very difficult week. My elder DS used to cut things, often different textures. Bedsheets had to be replaced once a fortnight on average and sometimes sheets were destroyed without never having been washed. I started telling the consultant as Nd expected he'd sympathise. Instead he just looked at me. I asked why are you just looking at me? He said a DC he saw earlier in the morning used to cut himself. It brought everything into perspective for me. I was also told to make DS's do lots of exercise. I was always very strict with them. I didn't let them get away with using ADHD as an excuse for poor behaviour. After puberty both DS's calmed a lot and now both are really lovely adults, kind, caring, considerate and generous of their time for others. They both have jobs and are buying their own homes. They both use a spreadsheet for budgeting as could be a little impulsive.

You can only do your best. Everyone gets things wrong sometimes.
Clear boundaries but few rules. Pick battles.
Think in terms of what's understood rather than ages.
Watch 'em all the time when they are little - prevention rather than cure.
Foster sibling relationships - they are crucial in the teenage years.

I often think that my kids' teachers would struggle to believe how my kids have turned out - particularly the one who gave them the most grief. He is so self-aware now, but he was in his own little world when in primary school. Secondary school had its own problems.

Just hang in there!

My eldest was so different to my youngest. Both are autistic. My youngest would not be cuddled.

With my eldest I'd get up each morning and make his drink and mine then sit on the sofa in the kitchen and cuddle. Talk about the day ahead, talk about his worries, talk about whatever he needed to talk about. Or often just a morning cuddle.

This set him up for the day, almost like filling up his tank. Our SEN support said it was one of the most important things to give.

I always told him:
4 hugs a day for survival
8 hugs a day for maintenance
12 hugs a day for growth.

He struggled terribly at school but did well academically.

Can we talk screen time? DS (5) is just OBSESSED. He loves tv and a lot of meltdowns have always been because it goes off. Our childminder has older kids and now he’s obsessed with Minecraft and a snake game on his dad’s iPad.

he says to me ‘I don’t want to play, playing is BORING’ and etc - I know some children can handle iPad etc but I honestly don’t think he can. He’s always been glued to anything like that as soon as it appears, from 1.5 on. DH thinks it’s fine, and it’s fine that he plays with childminders kids on theirs some of the time while he is there after school, but I’m not happy about it.

We had a rule about no tv in the morning but he’s started going downstairs at 6:30 or 7 am on a school day and watching tv or getting the iPad, and we’ve been so exhausted (working, renovating, small kids) I’ve just let it happen, but I want to stop it again as I don’t think it’s any good for him at all and we’re just getting meltdowns about it and ‘poor me I’m never allowed iPad’ attitude - at 5!!!

Also fed up as I spent a ton of money on two different kinds of kids flavoured DHA for the nemechek protocol (gummies and liquid) and he won’t take either as they smell gross. Sigh. Off to try to find another kind then… also I keep forgetting to give him all three things every day and DH doesn’t see the point and isn’t helping to remind me so not even doing it consistently.

I would like the meltdowns to stop. I’ve tried to suggest to him that when he has a cry he could do so quietly, but it always has to be explosive wailing and shouting. We get less now, but I’d like to lose them altogether or to be able to point him toward a less disruptive way he can discharge stress.

Really useful to read. Thank you.

Anyone have any thoughts on my post on the screen time?

I have a 15 yr old ASD child and he is so polite and well mannered - unlike alot of autistic children he adores school and thrives around people. He is head of the student council at school and runs (with adult help due to safeguarding laws) a youth club for SEN children. However polite and lovely he is - he is neither to his dad or GP's because they constantly shouted at him and hated my parenting techniques when he was younger - which was letting him be himself - they saw it as giving in to his meltdowns. He refuses to have much to do with dad and GP's which can be very difficult but he can remember his words "how much they hated him when he was little". He is very rude to them but sees it as revenge for how they treated him when he little.

I was an advocate for him and stuck to my way because I felt it was the best approach and unless you ask his dad or GP's - I have so many comments about what a lovely young man he has become.

Going back to what a PP said about personality I do think alot of that is true - He is an extrovert, he is very loud and very passionate about his niche interests and has no desire to "fit in" he loves "being himself" and I sometimes think it is loud personality rather than the ASD that his dad and GP's find hard.

It has caused a lot of issues over the years because I was never able to leave him with DH or GP's because they just couldn't manage him and they blamed me. They still find him irritating and rude but all sides are having to learn to tolerate each other.

Lots of “because” and explanation.

Don’t touch that because you could get burnt and your hand will hurt. You mustn’t say that because it makes the person feel this. If I let you do so and so I wouldn’t be doing my job as a parent properly because that would teach you this. If you keep doing that people will avoid you because they don’t like it and you’ll have no one to play with.

I see a lot of parents angrily shouting orders and saying “because I said so!” and it just results in a distressed or defiant child. Talking in a normal tone about cause and effect and why we do what we do has been really effective for me.

Hi OP, loved reading this thread as a glimpse to my future. The support and reccies have opened my eyes to additonal resources out there and gave comfort that the future is different but not bleak.

My thoughts:
You and DH need to be on the same page in terms of what you allow. You have to solve that first.

Here, its no screen time in the morning until he is ready for school. No debates, we took the meltdowns but we didnt give in and the meltdowns ceased after a while. Now it's not asked for. Evenings, weekends, holidays are a different matter.

For the TV we put the timer on so would turn off automatically (have a few years until that is discovered) and said the TV is now tired, try again tomorrow. Same for ipad/tablet/phone, all on timers. Turn the TV off at the switch at night and if it turns on by remote, put that away. iPad/device high up so your 5yo can't get to them early mornings.

Bored, boring chat back from mine too. Yes it is but there's craft, playdoh, books so knock yourself out showing me why they are boring. Tell him something obviously wrong so he would focus on that and hope the moment passes.

Would ask the childminder to not allow your son to use/watch the older child's as content will not be suitable very soon. Or change child minder if not rooted to that person.

My thoughts, hope some of them help x

If you look at Naomi Fisher and her low demand approach, then you’ll see the approach that we use with our DD (and was also the approach recommended by CAMHS when we used to see them). She does relatively cheap online courses/webinars, I can’t recommend her enough!

For a book - I’d recommend Scattered Minds by Gabor Mate. This was recommended by a paediatric neurologist, around the time that things were very difficult for DD, and it was my bible for a while & taught me how important self-regulation is for me, so that I can stay calm when DD isn’t. The whole “low arousal environment” approach ties in with Naomi Fisher’s work quite well.

My 11 year old DD is lovely. I am told this a lot by others, I see it myself and she is a really kind and wonderful child.

She is also dysregulated at times though & then her behaviour towards me, DH, and her siblings isn’t quite so lovely at all.. but that unpleasant side isn’t who she is, it’s just a sign of anxiety.

I understand this, so it informs my response, and she always apologises to everyone once she calms down; and often thanks me for supporting her.

She never hits out anymore but she can get very shouty.

It’s ongoing work to support and stay calm and empathic - and I am primarily responsible for co-regulating her as I am her safe person and it can be really exhausting to carry that at times!

From the outside it might look like an approach that is too “soft” and it doesn’t ever involve punishments, but it doesn’t need to as we work together on the same team, there is no need for shame and what some people call “discipline”.

I agree with the poster above re: find the triggers. For us, it meant taking DD out of mainstream though and finding for other education - but that isn’t the case for every child.

Feeling kind of worried today. I thought we were turning a corner about a month ago, DS was going whole days without a meltdown, was really improving, and then he got a virus and tbr behaviour tanked.

I’m just so worried. I don’t want him to get worse - or stay the same level of meltdowns - as he gets older and bigger. Today he hit DH in the face when he turned off the tv. I just can’t have it. I’m scared he’s going to grow up to be an awful angry person, and we got a letter saying it would be 18 months for the diagnosis, and we’re not qualified for any therapy for him or anything until he is.

I mentioned upthread my childhood/adolescence was ruined by my awful narc of a sister and I am so triggered by DS’ bad behaviour, even though when calm he is sweet and kind. When the red mist is down he can be so aggressive.

I don’t want to end up with the kind of life I escaped by going NC, and that I watch my mother have with my sister. I’m scared.

Also I am under so much pressure. I work full time, I’m bringing in the money while we renovate, I’m interviewing for a higher paid job so we can finish the house. I have the vague idea I need to be writing to representatives or campaigning to get him help sooner or applying to charities or something but I’m up to my eyeballs and ND myself so I’m shattered.

Back on the Nemechek protocol and hoping like hell it helps.

would any therapy at all I could get him, alternative or otherwise, help with emotional regulation skills? That’s hands down the biggest delay.

Not read full thread, but wanted to say one thing we did was alter the environment around the child.. with the aim of trying to keep ds on an even keel as much as possible. So this meant no shopping trips or opticians appointments after school (couldn’t cope, would get very overwhelmed and have a meltdown, be rolling on the floor etc), shorter play dates, or play dates finishing before a meal (as mealtimes were trigger times for challenging behaviours), and changing how we do holidays (we limited the amount of travelling we do (max 2.5 hours), and always booked places that were a bit more remote, so that we could occasionally dip into more populated, busy areas, but were mainly based somewhere rural (as city-based holidays would result in meltdowns). We also tried to limit the amount of electronics dc did (we found that moods could be extremely volatile after a long session of gaming). Ds getting into exercise as a teen has really helped. I cut back drastically on work, so have always tried to make myself available to talk things through when there are problems that have occurred, and I make myself available as a revision buddy / mentor (which really helps with focus and anxiety). I think it has also helped that ds has a close sibling, so has got a lot of social interaction this way (even when it has sometimes been lacking at school). I am not saying that everything is perfect, but I think sometimes you have to take the rough with the smooth!

Hi OP, please try not to panic. DS probably isn't quite better yet and is over rescting to small stressors.

We found NVR helpful (non violent resistance). For us not her.

DD did smash a couple of tellies and used to attack us too but is loads better now at 11 and understands her feelings a bit too.

The book The Explosive Child (Greene) is good and so is 10 Days to a Less Defiant Child (Bernstein). They both have practical strategies in.

My 18 year old has adhd. Unfortunately for her she turned her frustrations on herself and not others which led to a decline in her mental health. He's a genuinely lovely girl and her main issue is inattentiveness.

Can I ask, did your child have warning that the tv was going to be turned off? Was he given reminders or visual aids (e.g. sand timer) of how long he had left of tv time? Was he given a clear limit at the start?
e.g. 20 minutes or one programme. I find these things important for both my ND children. Even then, it can still be upsetting that the time has ended, but I tend to empathise and remind them of when they can next do that thing

Each child is unique and how any need is reflected is different. My Child has in my view no ADHD needs and I have no idea how they arrived at that diagnosis.

What works for one child doesn't work for another but I would say consistency from everyone is key along with the right environment. What one child needs to regulate is different and sometimes those targets need to be tiny but consistent. They have to go out into the world where they may find people are not so tolerant or understanding as others. Sometimes it is trial and error and constantly reassessing what works and why.

Wow, how lovely. Your 12 year old sounds like my 8 year old, he’s lovely unless it’s time to do something he doesn’t want to do, or time to stop doing something he’s enjoying.

He can rant and rave at me too after a bad day in school. No meltdowns or anything but just angry, difficult, rude. I struggle to not reprimand him there and then.

OP with regards to your worry about when he’s 18, I’ve been there.

But, I’m going to give you a (kind and gentle) shake. He’s 5. Can he swim competently? Imagine if he was in the sea, alone, at the level of swimming he is now, at 18. Would you expect him to still be the same, 5 year old level? Or would you expect him to have become a competent swimmer by that age, safe to be in the sea alone?

The same applies for behaviour. We catastrophise (I do it too) and think our child’s behaviour now is reflective of how they’ll be when they’re older.

Educating myself.
Learning that behaviour is a means of communication just like speech is. "Bad" behaviour is their frustration at not being able to communicate their needs, so help them find another way to do this.

We were having a small birthday party for my 3 year old daughter with just her, me, DH and his gran and he just had an almighty meltdown and upset what should have been a really happy occasion.

DH took him to another room to stop his screaming, crying and roaring demands ruining it completely and he then went completely psycho, screaming, growling, hitting etc.

I had to make him come to choose a present for her, then he had to have one for himself too, and today he was given two small presents by his granny too but that didn’t head off him going ballistic because something (of hers) he was playing with didn’t work the way he wanted it to. I’m worried about his empathy, he just doesn’t seem to give much of a shit about other people - is this within normal range for a 5yo? I don’t even know how to increase empathy apart from constantly ask him to put himself in others shoes.

I’m worried his constant meltdowns are going to affect my DD and traumatise her - she’s only three and such a sweet, sunny little thing. She just goes quiet and stares, and gives into what he wants a lot of the time - this is terrible modelling for her.

uuuuuuuughhhhh

She seems happy enough - it’s probably me that can’t cope. :(

It's within normal range for a 5 year old with an ASC(!) Empathy takes a longer time to develop and he may need a lot of help. And it goes in very small steps.

You can use Social Stories to teach little bits of empathy.

Also getting him to recognise how he feels himself, is a first step towards understanding other people's feelings. What I mean is, we expect him to be happy, as you say a party should be a happy time, maybe we use the word "happy" and everyone else is smiling and cheerful but he doesn't feel happy, so he can't connect "happy" and everyone smiling with how he feels inside. It's important to name his own feelings in the moment, to tell him "happy" when he is feeling happy.

And a birthday party - even a small one - might be too much for a child with an ASC. Sensory overload, disruption to regular routine, social requirements, unusual situation. Over excitement even. And is he OK with choosing? (My DC found choosing stressful, for himself or anyone else)

This is such a tough path to follow.

Yes, I think this is normal for some kids. They don't get the social assumptions around the activity and/or can't regulate or behave "appropriately". It comes with time and maturity. It helps a lot to let go of expectations of what e.g. a birthday "should" be like.

DD really struggled occasionally with events that were about her and very often with events that weren't, right up to a couple of years ago. Things like Mother's Day and Valentine's Day were a real flash point (she doesn't have siblings).

She's 11 now and more or less in the normal range with this kind of stuff. She even picks out thoughtful presents when prompted. Although she doesn't like spending her own money on them but hey, who does?!

DH is also a bit crap with formal celebrations and often just sticks gifts (even thoughtfully chosen ones) in a drawer and forgets about them...