Don't even know what to call this but it will be long.

[usedtobeaperson]

My 11 year old ds is a stunning young lad, he is loving and caring, funny and sees the world in a completely unique way.

Sadly I don't see the world in the same way he does which causes him frustration and anxiety.

We have been through many, many diagnostic routes (not in the UK) and he consensus seems to be that the issue is me rather than him. I would like to consider myself of at least average intelligence yet I seem to have consistently failed parenting course after parenting course.

I would like to build a better relationship with my ds as he really deserves this and I am so, so tired of trying all the time to parent more effectively and not making any headway.

We have just had our weekly swimming lesson which he managed about 10 minutes of before having a massive meltdown in the pool. An easy answer would be not to go swimming but if we gave up everything that resulted in a meltdown then we would go nowhere including school, do nothing other than screen time and put absolutely no demands or limits on ds. I don't want to live like that and I don't think it is fair to teach ds that this is how we should live. I also don't believe that other people live in this manner in order to achieve the behaviour they want.

Most of the parenting courses talk about building relationships and taking time out to really spend time with my kids. We read to ds every night and have family games night once a week. One weekend day is family day and we all go out and spend time together. We have special time with each of the children one on one a couple of times a week. Perhaps I am not doing enough interactions that are led by him but try as I might I can't play minecraft and it only ends in him yelling at me if I try.

We have very clear boundaries around behaviour and we don't tolerate shouting or hurting. Both of these have immediate consequences.

I'm not even sure what I am after but I am tired, just so, so tired of having to manage the meltdowns everywhere, everyday and failing.

Youaren'tkiddingme - a website would be great, it can be hard to know which sites are credible and which ones aren't.

Lougle - the issues I have difficulty with managing are

difficulty with following instructions unless they are totally in tune with his own track of thought - unable to understand homework, school assignments, behaviour expectations for social situations such as funerals, other peoples ideas, rules etc - he is quite verbally able but not always able to have insight. One insight that he has expressed is "I hate being told what to do'

I have tried some suggestions I found in a book about children who avoided demands. Some of these work some of the time for ds but not consistently.

meltdowns are a big one - I never know what is the best way to manage them and it always make me feel like I am fighting to survive for all of us particularly if we are in public (I try my hardest to be calm and stay completely centered during meltdowns but inside I am thinking 'are we going to get out of this' 'how can I keep him/me/dd safe during this'. So far he has always calmed down eventually and we have managed to get out of the situation in one piece. Once at the pool it was getting very close to closing time and he was still in absolute pieces and running around and around the pool shrieking and pinching himself and shouting at me to make it stop. I really didn't know what to do to get him out of there and home safe and had the pressure of the complex closing. No meltdown seems to respond to the same thing so once I feel like I have an idea of how to handle something it won't work the next time.

I guess these are the big ones at the moment. I feel like I walk myself into no win situations all the time and I am constantly trying to analyse everything in terms of how he will react and most of the time I get it wrong and I am exhausted!

I would very highly recommend the Explosive Child as pps have done. I'm sorry if it feels like forcing yet another technique on you but I think it might lift the weight of guilt from both you and DS. His starting point is that all kids want to do well, and that kids who struggle as your DS struggle haven't developed specific skills. Diagnosis or not is really irrelevant. He then has a method of problem solving with the child which helps to develop those skills. It has been very useful in helping our 9 YO DS who is v like yours.

If you are in the States you might even be able to go and hear the author speak - he's very good and does one day parent courses. He is very forthright about how daft it is to blame the entirety of a child's issues on parenting when you are looking at parents with other, perfectly normally behaved children. So that might encourage you!

Have you heard of pathological demand avoidance? Try googling and see ifvit fits your Ds. I've worked with a boy who had this and usual behaviour techniques just don't work.

Try this as an experiment. Next time he gets in a total meltdown (maybe at home where it is easier to do) rather than engaging with him directly, pick up a book or magazine about something he is interested in (even if it is "how to do minecraft"), sit down somewhere where he is able to come and sit next to you and calmly start reading aloud.

educatingarti - I think one of the books I read was on this. I will try that technique as anything to try during a meltdown is worth a go. I should have an opportunity at some point tomorrow so I will let you know.

Have a look at emotional scaling.
In the special needs board theres a great thread on sensory processing with some very knowledgeable posters.

I'm so angry on yours and ds behalf that someone can blame parenting on your child running around a pool pinching themselves. It's clearly a child in distress who doesn't know what to do. Do you have a child mental health service where you are? Somewhere or someone who can help with his anxiety?

Would you like me to link this thread in our SN board pub?! Some more posters may have some suggestions for you. Also why not pop over and see us there? We are a friendly bunch - promise!

educatingarti I just did a questionaire online after googling that demand avoidance you mentioned and found PDA Society (I don't know if this is really indicative) and he scored 52 so only just outside the norm. I think it will be like everything else that he won't meet the criteria on a true assessment. Thank you though as I will try some of the techniques.

My post made it sound as if DS diagnosed at 8 - OT came into school once a week when he was 8, saying he had weak back muscles and poor fine motor skills, other diagnosis came at 13, when he was still struggling to write anything . Retained reflex spotted at 14 .
My DS can come across as impulsive, immature, fussy etc .
It was a huge relief to be told about retained reflexes - and to be given a reason for his inability to write or remember things ( dysgraphia, dyspraxia)but I spent years knowing something wasn't quite right and feeling I was being judged on his behaviour .
The relief when his new school ( started at 13) not only acknowledged his dysgraphia, dyslexia but also agreed with his report ( written by ed psych when he was 13) was immense.
He has just done a further assessment to find out if he qualifies for extra time in his GCSEs (yes, he does, phew!) and to have an independent report list all his difficulties is wonderful - strange though that sounds, as finally somebody else, apart from his parents, are saying sometimes he finds it hard writing, recalling information from long term memory, sometimes understanding life and that he needs help to do so.
Social stories don't always help but we were very specific - if I knew he'd had problems in the past I tried to help him with that particular situation.
Eg - I would talk through the entire swimming lesson from leaving the car to getting back in after the lesson ,step by step , acknolwedging the parts he found particularly tricky but giving him a way to deal with it. If it didn't work that was a trigger to a discussion about what else might work.
I had to keep reminding myself that his meltdowns were a result of immaturity ( see retained reflexes!) and anxiety.
Sorry to ramble - it has been a long haul but my 14 year old now a happy, secure person and as he is happier, so am I!

yourarentkiddingme thank you I will have a look at that emotional scaling. I haven't heard of this. We have something called CAF Mental Health Services. They have been the route of our publicly funded assessments but have said that his Anxiety is not severe enough to access any services but recommended a parenting course aimed specifically at Anxious children. To be honest it was information we had seen and heard before but we did try it all again because what else are we to do.
I don't want people on the Special Needs forum to be upset about me being there when it is not really been recognised as Special Needs if that makes sense.

No one will get upset. Everyone is welcome. Why not pop over and read the goose and carrot thread in SN chat and see what you think?
Not everyone there has a child with a diagnosis either. Many like you have been or are going through the process.
You are welcome if you think it's somewhere you'll get support

Hope the techniques help. I'll be interested to know how you get on with the book reading.
As far as the questionnaire is concerned once they are 12 they only have to score 45 so your Ds is nearly at this stage and also it is a questionnaire for extreme PDA. I think this might be worth looking into a bit more.

I think SN does sound like a possibility and you need to pursue that. I don't think it's your parenting. Parenting class techniques don't just magically work on all children.

But also like a couple of others wondered if he needs a bit of space? You're trying so hard and it's often said children need attention and 1 on 1 time etc. But with my DS who is 10 (and has some similar issues, though not as severe) I can really see him starting to withdraw a little, especially from me. We get on, and he wants me to come and hug him goodnight and he'll talk to me.... but there are times when he wants to be left alone – even if it appears unconstructive, he needs to chill out, think and dream. I don't think it's unhealthy - it's kind of progress towards more independence and becoming a teenager.

I would try to be led by DS - what does he want you to do? What are his passions, are there things he can do that will make him feel he is in charge for a bit? If he wants to teach you minecraft, maybe that's so he can have some control. Even things like giving him domestic jobs he's responsible for, if you don't already. My DS loves that.

Also, the fact that he isn't scoring higher may possibly be because of the huge efforts you have put into parenting - you may actually be an excellent parent with a PDA child, rather than his behaviour being because of poor parenting!

Not trying to diagnose online! He may of course not have PDA, I just think it might be worth looking at further, and of course the techniques they advise, may be useful regardless!

Ah yes ds3 tends to seek attention. I have to tell him to stop & I'll come back wheb he's calm (actually that doesn't work very well tbh).

Is he anxious? Ds3 is very anxious but I'm only just beginning to realise how anxious (he's beginning to open up about that). I need to reread the Greenspan book myself.

I thought of PDA as well. It's quite controversial though & some areas will not diagnose it. Definitely worth following up on it though & trying any PDA type suggestions.

Petrova thank you that was very helpful.

We have been very lucky in some ways with the writing. School have allowed him to use an iPad to do all his written work. He has had it for 2 years as he cannot write at all other than his first name. He didn't really qualify for the iPad as he didn't have a diagnosed reason for not being able to write and some of the people involved in the time opposed it as they saw it as a behaviour and that allowing him to have the iPad meant that he got away with it. The iPad has not been a magic bullet -writing time is still a school time area where he has massive meltdowns unless he has full control of what he writes with no instruction from anyone else, he still can't be assessed on written expression as he uses speech to text so he still gets well below ns for written expression as he is not actually writing anything according to their assessment criteria but hey ho another battle another day!
DS is sort of the opposite with the social stories - the more closely it is related to him the more likely he will meltdown even talking about it. I am usually better off finding a book or story with an incidental reference to a situation and talk about it without relating it to him i.e "Wow he really found the noise in the pool too loud." "He found wearing the earplugs really helpful" This may still be too close to home for him and he will begin to meltdown that the story is about him even when it isn't.

Last post sounds insensitive - not meant to - sorry!
My son was also assessed for ASD (told he wasn't as he did imaginative play) but often reacted in the way you describe .
I used to try and get him to recognise when he was beginning to find it hard . We called it 'feeling fizzy' as when he felt it was spiralling out of control he began by feeling 'jumpier inside' . He couldn't really describe it but said he could feel it in his stomach , then he became hyper vigilant and all noises seemed louder and everything felt busier and louder and out of control, and that is when he would lose control.
Day to day
A daily timeline / visual timetable helped.
His statement says he finds it difficult to process instructions so they are kept brief and done in simple steps.
He is quite black and white in his thinking and can take things literally , which can cause problems , and often does not realise the consequences of his actions , even though they are clear to everyone else.
I've realised he will often only learn what not to do by doing the wrong thing then getting the punishment. He can't always understand what is wrong ( even when told) until he has done it and been given the consequence.

Sorry -X posted with you .
You sound like a fab parent - As a pp said your DS may have not registered on the assessments because of all the hard work you have done.
Sorry for my rambles - they are becoming unhelpful now :-)
Hope you are helped by all the wisdom from other posters though

"writing time is still a school time area where he has massive meltdowns unless he has full control of what he writes with no instruction from anyone else" This sounds very like the boy I worked with who had PDA

Thank you everyone lots of books and research to do. I will try to spend some time going through it all.

I will try to give him space - he does like to go to his room to chill out after school for a bit which we are completely fine with. Other than this he is quite demanding of my time and attention (sounds awful to put it like that but that is the best way I can describe it) He really, really struggles with screen free time and doesn't really seem to know how to play. Passions are definitely screen related. He hates chores of any kind and actively resists most attempts at giving him responsibilities. We are trying to work on him being able to make his own breakfast which has been a complete disaster as he flat refuses to make it and then everything that happens during the day is then related back to the fact that I didn't make his breakfast (I can yell at you because I am hungry because you didn't make me breakfast, I can't do writing because I can't concentrate because mum didn't make me breakfast, I fell and hurt my knee because I was weak from mum not giving me any breakfast, I feel sick and can't do my homework because I haven't had enough food today because mum didn't make me breakfast etc ect etc). This is generally how any attempts we make at giving him responsibilities go and before you ask we asked him what skill he thought he might be able to take on and he decided on making his own breakfast!. Think we might have to back off this one for now.
Off to do some research!

Demand avoidance is often routed in anxiety. So the fact he wants control of what he writes is likely due to the fact he cannot use expression to write what's requested. Has he ever seen a speech and language therapist? Has his expressive language ever been assessed? Children with amazing verbal skills can have poor expressive language.

What helps for my ds is when he has to write something being given pictures - like a story board - and he has cpfisual clues about at to write. Eg he can't imagine a mountain and what it's like there but with a picture he can see its snowy, so uses words like cold, it's high up, it may be sparse or trees etc. We write words he can use on pictures to describe twit and then talk about how you may feel being there. Then because he's actually very cognitively able he can remember that description and adapt it for anything where a mountain appears iyswim?!

Also if social stories don't work and you can use third person have at look at comic strip conversations - this uses this technique and works well for my ds. He can't do it in his person either because he gets stuck in 'his' characters intentions and therefore the reaction of the other character is wrong!! With the comic strips he can see 2 different characters and how one characters actions may affect the other.

And this is CERTAINLY NOT PARENTING. You are clearly using a lot of techniques and very aware of your DS needs. Be proud of what your doing.

usedtobe you will be very welcome on the special needs board.

For DS, I find it helps to think about approaching things at a tangent rather than head on. It sounds like your DS might also respond better to tangential approaches?

Like a pp, I have found that sitting reading aloud from something can get DS to sit down calmly alongside me.

At home, we are working on getting DS to go to his room when he needs to calm down. This is absolutely not a punishment - and we make sure he has lots of nice things in there, in the hope that they help him calm down (reading books by himself seems to be a good one for DS).

He's resistant to doing this, as I think he sees it as us controlling him (big fat no, obviously), but we need him to learn good habits to help him manage his own behaviour, so we persevere (he's 6, so we do carry him there sometimes and also hold the door shut if needed). For us it's also a safety thing, as he physically attacks us and throws things at us when he's having a meltdown.

Out and about it is much harder (as I'm sure you know). We try to find a quiet corner where we can contain DS (again, he's 6, so may not be possible for your 11yo DS).

It does sound as if some of your stress is coming from non-safety issues (e.g. swimming centre closing). While those are unfortunate, you need to get over your embarrassment. Perhaps you could speak to the centre on the phone about how this happens sometimes and what is their plan to support you in dealing with your son?

Also, if he's 11, you have clearly been able to keep him and yourself and DD safe through very many different circumstances, so perhaps an internal mantra to remind yourself that you evidently do know what to do to get everybody home safely. What has worked in the past?

Remember, that may not be an obviously active thing - it could be letting him have the space to express his feelings and waiting for that to be done before you then intervene to get back on with whatever needs to happen next.

petrova

Firstly, imaginative play does not rule out ASD diagnosis. DS spends most of his non-screen time doing imaginative play. The imagination difficulty is in not being able to anticipate what a new experience will be like, e.g. eating at a new restaurant, being able to anticipate consequences for actions.

The NAS website description is very helpful for explaining this aspect - I also had that wrong assumption before I read it. But I'm a lay person, not a professional whose job it is to carry out assessments for ASD...

when he felt it was spiralling out of control he began by feeling 'jumpier inside'
This is really interesting. DS tried to explain something to us the other day about how sometimes he feels little shocks all over his body. He didn't obviously place it in any context (e.g. losing control), and it was like he was trying to ask us whether this was something everybody's body does.

I haven't been able to think what he might have been trying to describe - but maybe your DS is onto something!

Thanks I have been having a read over on the other forum.

We use the bedroom as a calm down place too. DS is also resistant and too big to be carried but can usually be persuaded by systematically unplugging all the electronics until he complies. (So there is a punishment for not going to his room but the room itself is not a punishment!) It may not be a great method but it means we can get him there and it definitely helps him to calm down. He is quite visual so we have loads of visual soothers in there - tropical fish, some lava lamps, some oil drop timer things, maze books, lots of picture books with beautiful illustrations etc. These really help him to re-center himself.

The pool closing was only a stress because there was pressure to leave, staff couldn't leave until we did and while they have seen many, many meltdowns there and have some understanding they have families to get home to too. I don't generally find myself embarrassed by the behaviour and while I know that we do eventually get home I never know what that is going to look like in a given situation and how long it will take. I worry about safety as he does have meltdowns in the water and he can run in certain circumstances without thought for any dangers. My dd is 6 so I at times get into a bit of a situation of trying to cater for both of their needs - I try to build this into every situation of having contingency plans but I am not super human and things happen constantly that I am not prepared for.
DD can get quite frightened by meltdowns (he is not violent but can be quite verbally aggressive and have self harming behaviours. He can react even further if I nurture her while he is having a meltdown as he feels he is the one who needs nurturing but won't tolerate anything of the kind if that makes sense. We have had a couple of situations where I have been concerned about roads/forests etc as he runs when overwhelmed.
We have a tracker on loan but he doesn't like to wear it and it can cause meltdowns all on it's own so we reserve it for when we are somewhere like on holiday and really need to ensure his safety.

Getting through a meltdown is really just a matter of waiting it out but trying to make sure he doesn't drown/get lost/get hit by a car in the meantime.

See, to me it sounds like you have lots of brilliant parenting strategies in place to deal with a very difficult situation.

And glad to hear you don't struggle with embarrassment. I only suggested that because you started by taking the blame on yourself for DS's issues, and I am still toughening up my own skin so it's a recent issue for me .

There will be others on the special needs board who have to juggle similar of meeting the needs to two DC at the same time, so perhaps start a specific thread to ask if there are any other tips?

I agree. You're really trying to understand him and help him. You're not a bad parent. He obviously has some things he is very sensitive to and finds very difficult – I don't even see how parenting could cause issues like these.

usedto I want to apologise for my earlier posts as I didn't realise from your initial posts how far you have travelled down this road and the full extent of the issues you are trying to deal with. I'm sorry if anything I said offended you or made you feel worse