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.

[APlaceOnTheCouch]

you sound defeated by it all. I don't know if you want advice or just to be heard.

I'm not sure how you can fail a parenting course. I thought the point of them was that you tried the techniques they provided. So I can only assume that you're not trying the techniques wholeheartedly because you don't agree with them. Have you considered counselling for yourself? If your rigid ideas about parenting are making issues a battleground then it might help to work out what you are frightened of happening if you follow the parenting advice.

As for the meltdown about swimming, I don't see what would be lost by having a break from it if it prompts weekly meltdowns. I do think swimming is an important skill but there are different ways to learn from the type of classes to the teacher. I wouldn't make it a battleground.

You sound a bit inflexible eg 'try as I might I can't play minecraft'. I'm pretty sure you could but if you don't want to play then there are other ways to interact around your DS' interests eg when you read together, you could read about minecraft I know it sounds worse than poking hot pins in your eyes but I'm just trying to give an example There are minecraft/gaming conventions you could attend. There are online programming classes.

I guess what I'm trying to say is that you need to bend a bit more and enable your DS to make decisions not just obey them. On a practical level, I'd recommend the 'How to talk so kids/teens will listen' books.

[usedtobeaperson]

Thank you for answering...

When I say that I have failed parenting courses. I have tried really hard to put into practice what they say and somehow I think I am not doing it right as the techniques don't seem to work for me.

We could try having a break from swimming...I would be keen for him to do something active after school for health, fitness, wider range of friends etc and as yet swimming has been the only thing that he could really manage. I guess you are right though and he is not managing and that my expectations are to high. Thank you!

Counselling for me might be a good idea. Slightly out of our affordability at the minute but on the list of things to do.

Thank you for the ideas regarding minecraft. We have one game convention a year which he really struggled with the crowds at. He does not really like the minecraft books but I will try to be a bit creative about what I could do that he would like. I will give playing another go but as inflexible as it sounds I won't be shouted at.

I have the book how to talk so kids will listen and try very hard to implement it. I have not had a great deal of success so will have another read as I may be doing this wrong.

I will have a really good think about more times where we can allow ds to make decisions.

[APlaceOnTheCouch]

It doesn't sound inflexible to not want to be shouted at - sorry if that's how it came across. We have a minecraft obsessed DS, DH doesn't play games at all so how he interacts with DS is to chat about what he's building and make suggestions. I'm not sure if that would work with your DS? eg 'how did you build that? what about a library beside the police station? etc, etc' not demanding or teaching chat - just interested and appreciative of how good they are at playing.

[WildStallions]

I'm very concerned by your post!

Do you know how many parents of children with SEN like ASD have been treated like you.

It's highly unlikely it's anything to do with your parenting. It's much, much more likely your stunning DS has a problem.

But it's cheaper and easier for the state to be lazy and blame you.

Please don't take the blame. It's not helping your DS.

[usedtobeaperson]

Thank you APlaceOnTheCouch I will try to do the interested chat idea and see how it goes.

WildStallions thank you for your answer. When ds was wee his daycare staff suggested Autism but we had assessments and it was ruled out. When he started school they asked he be reassessed and he still did not meet the criteria. He struggled with reading and writing so was then assessed for Dyslexia which was also ruled out though he still can't write at all (the report suggested that we spend more time on it with him and involve him in lots of fine motor development which we have tried to do but I don't think I was destined to be a teacher as my involvement has made zero difference)
When he was about 8 his teacher suggested we investigate sensory processing and dyspraxia both of which have been ruled out. All of the reports end with the same suggestion - that I do another parenting course.
It seems pretty clear from the reports that he doesn't meet the criteria for Special Needs.

You say that taking the blame is not helping my DS - tell me what will?

The last report suggests the same as APlaceOnTheCouch - that I get some counselling as they feel I may be projecting onto him and his behaviour is a reflection of this. So I do take the counselling suggestion seriously and am putting aside some money towards this.

[WildStallions]

What will help him is getting the correct diagnosis.

I'm not sure what country you're in or what criteria he's failed to meet but so many people have had so many concerns that I'm still convinced that SEN is the most likely cause.

There is just no way the fact he can't write at all is due to parenting. No way in a million years.

Who has assessed him?

[usedtobeaperson]

The Autism criteria was investigated on the public system so was through a publicly funded Psychologist using something called ADOS

We paid for the Dyslexia assessment with two different Psychologists both of whom came back saying no. One used a WISC and one used a Woodcock Johnson test.

Sensory Processing and Dyspraxia was done by publicly funded Occupational Therapist who also assessed for ADD...
Tests were Connors for ADD, Brunninks for Dyspraxia (I think this is right I can check the file) and a Sensory Processing Checklist (I can't remember the name but can check)

Not sure what else I can do...all of these assessments say he doesn't meet the criteria for diagnosis. I don't understand how I can be doing things so differently to other people but then I think maybe it is like this for other people and they just suck it up and get on with it.

Any rate enough whining from me. Practical ideas new ones, old forgotten ones any thing really....

[Youarentkiddingme]

yoir post converned me too. It sounds like you really are trying but there's 'something' standing in the way. I totally get that not being able to see things the same way and finding no common ground unless it's all on the child's terms. My own ds (who has asd) is like this and can't fake being interested in something.

I'm assuming from what you've said you have other children and you aren't experiencing the same difficulties? If that's the case I'd say likely not your parenting - more like you say different mindsets trying to find common ground.

Have you read the explosive child or out of synch child? You may find these books have useful suggestions.

[usedtobeaperson]

Youaren'tkiddingme thank you. I have got both of the Out of Sync Child books but not the Explosive Child. I will have a look in the library and check that out.

I do have a younger dd but I think she falls into the category of being a pretty easy child that anyone could parent in their sleep!
With ds it is like I am on another plane of existence to him and I can't bridge the gap no matter how I try. The last person we saw (the OT) said that because he was first and that I had some traumatic experiences in my childhood that I projected these on to him and sort of caused all his difficulties and that I wasn't doing that to dd which is why I don't have the same difficulties with her. I have tried to really look at this and be aware of times that I might be doing this and change my way of interacting. So far I haven't managed to get it hence maybe the counselling could be helpful to understand my part in things.

Thank you for the book suggestions

[Scoobydoo8]

When my Ds was 11 I drove him to rugby and stood on the lines and drove him to athletics and sat and read in the seats. That was it really.

Your relationship sounds very intertwined. When you say we went swimming do you both go in?

I also learned from a piece of advice when he was 14 that you only speak to boys once eg 'did you have a nice day at school' then you wait and wait and wait .... and wait - then you might get a response - 'Yeah' . Which is fine. And not to harp on at them to try to get a full response or more info or to ensure they heard you.

None of this might be relevant OP, your post just sounded very involved with him but perhaps his nature makes that unavoidable.

[WildStallions]

I'm really sorry you're going though this.

I still don't believe it's your parenting - if it was you wouldn't be so concerned. You wouldn't have got all the tests done, or gone to all the parenting courses, or read all the books, or be posting here.

It does however sound like he has had the correct assessments done by the correct people.

The only thing I can think of which might help is treating him as if he does have Aspergers, despite the lack of diagnosis. i.e. reading up everything about Aspergers, and how to parent a child who has it, and follow all of the suggestions which sound appropriate for your DS.

In the UK it is standard to offer parenting courses to everyone who raises concerns about their DC, even if they do have SEN. Especially if they have SEN. Which is why I'm so suspicious of this suggestions from your specialists.

It's a very easy, very cheap, thing for them to recommend which lands all the blame on you, and none of the public health / education system. Which is why it's so attractive for them.....

A child who is loved and interacted with and treated with a normal amount of respect doesn't act like he has Aspergers and all the other conditions you've investigated without their being a real problem underneath.

Unless they've actually seen you be abusive to him, or parent him particularly badly, it is not right of them to offer you a parenting course.

The OT is certainly not qualified to say that due to your childhood you're causing these problems. So you need to disregard what she said. She's only qualified to assess his physical problems (dyspraxia and sensory problems).


Loads and loads and loads of children are not diagnosed when they should be. There clearly is something going on here not related to your parenting. There is no way your DD can be so easy, and your DS so hard because of you. That's not how things work.

[Youarentkiddingme]

Sounds like your services are crap (sorry) the OT remit is look to at the physical processes and motor planning of your DS - that will be affecting his ability to write - not a traumatic birth.

My DS physically struggles to write too. I've done a lot of research into it because that isn't a diagnostic criteria for ASD so I wouldn't allow them to use that dx as a reason.
What I discovered was lots of information on retained primitive reflexes and a website that has simple exercises/tests to try. Turns out my ds didn't ever get rid of the reflex that joined his head and neck muscles and all the difficulties he has - organisation, motor planning and fine motor skills are as a result of that. He is seeing OT next week as physio pick d on on many of these things and suggested he may have dyspraxia and dysgraphia.

I do the days with ds where he's in control - it's all about feeding his special interests. But what I find is unlike love bombing an NT child he finds it too much. He can't decide on something and get involved in it. I think he finds my presence in his interests intrusive iyswim? He wants me there to do his bidding rather than interact with. The speech therapist said that ds sees people as tools to prop up his interests rather than people to socially interact with. What he did suggest was to play games - read the rules together and then play by those rules. My DS likes to change and improve everything which decreases the fun for everyone else! When we play by these rules char as we play the game. When he bosses everyone or does his running commentary on what everyone is doing dont respond. He said forcing social interaction is stressful so it's a way of conditioning him to learn that questions and interaction get response but 'comments' don't. He also said to do massive exaggerated actions to things like "ooohhhhh, it's your go, will you get a 6?"" Are you nervous about the fact this throw could help you win?" Etc.
What he said was ds then got to go 'his' thing (eg factual commenting on everything) so it wasn't trying to change him - instead it's a chance to model 2 way conversation.
My DS is also 11yo and every now and then he suddenly comes out with a learnt phrase and initiates interaction.

Also have you heard of Lego therapy? My DS does this through NAS but there are books on it (Amazon I think). It's basically a programme where you build models in a group. Just a simple model with instructions where everyone has a role. Engineer, builder, brick finder etc. It's all about modelling having your role and sticking to it. Communicating what you need with each other but also not putting your own ideas onto another person.

[usedtobeaperson]

Thanks Scoobydoo8. Maybe you are right and I am too involved? I base my parenting on advice from the courses that say to be involved but maybe I am over doing it.

We don't both go in the pool. DS and DD have lessons at the same time. DD has a group lesson and DS has private as he would have constant meltdowns which interrupted the other children when he was in a group.

I will try the advice of speaking once and waiting.

Definitely food for thought thank you

[Youarentkiddingme]

X posts wild there's 2 of us indignant in your behalf here!

[usedtobeaperson]

Youaren'tkiddingme
Thank you. A lot of what you describe sounds like ds. He struggles to have anything happen that is outside his control.

The OT assessments ruled out there being a physical basis behind him not being out to write and the WISC and Woodcock Johnson ruled out there being a learning disability as a basis for him not being able to write. I have not heard of retained reflexes so will do a bit of googling and see what I can learn.

Lego therapy sounds a great idea. I doubt there is anything like that here. He would have huge difficulties not taking over the whole lot but maybe I am presuming.

Thank you - I will look into these things.

[petrova]

Hi
Agree with youarekiddingme - reading your post brought back many memories for me as your son sounds very like mine.
We went through many frustrated years when I knew something wasn't right but was told I was too precious, making excuses for his bad behaviour , that my expectations were too high etc etc.
My son was diagnosed as dyspraxic, dysgraphic and hyperactive at 8 ( school did nothing saying I had forced the paediatrician and OT into the diagnosis , but that's another story).
His current school observed him for an hour ( learning support meeting) and immediately suggested retained primitive reflexes .
I looked it up ( something like amoro- reflex? ) and he ticks every box.
There are excercises which can be done to help - otherwise pp advice spot on.
We used to do a lot of story telling based on different social situations to help my DS know what to expect ( he was very nervous about going anywhere new , this translated into meltdowns) and would suggest what might be said and how to respond.
Also to take our time to help him recognise he was having a problem, recognise it but help him deal with it without allowing him to avoid it.

[usedtobeaperson]

Wildstallions thank you for your last post. Can you recommend any books in particular that would be useful?

I don't mind if it is me not him - I just need to know what to do so maybe these books will be helpful in this.

[usedtobeaperson]

Petrova thank you. I will look at the retained reflexes.
I read in one of the books we have about the story idea and sometimes this works for ds and sometimes it doesn't. It seems to have to be the 'right' story so I will keep trying with these.

[Devilishpyjamas]

He sounds a bit like ds3. Another book recommendation - the challenging child by Stanley Greenspan. It goes into all the underlying sensory issues that can alter the way a child presents.

My ds3 isn't autistic (I know autism very well), but he is quirky & can meltdown quite quickly if pushed (except at school where he retreats). Anyhow he had his language tested as he struggles to follow simple instructions/gets lost in conversations & came out on the nintey something centile for his age. So nothing wrong with his actual language.

I have come to the conclusion that he is a little slow to process sound (he has floppy eardrums from previous ear infections) & particularly struggles in a classroom type setting & has squiffy eyes (he has an outward turning squint) & together, those factors mean he is slightly slower to process sensory information & therefore quickly gets disorientated & a bit lost. Well that's my guess anyway.

I'd bin the swimming if it always leads to a meltdown (I had to bin NT ds2's for years - went back & did enough to get him safe in 1:1 lessons - but he'll always hate swimming - ds3 meanwhile is a fish) & actually start to back off a bit. At 11 he'll be wanting to start being independent. Maybe do things side by side (cinema, meals out, bike riding whatever) & just talk to him about what he enjoys. Ds2 (NT) was reluctant to be seen anywhere in public with me from about the age of 12 (we have a joke about this) - I am largely a taxi driver these days (which is nice as we chat in the car) this increasing independence & getting irritated by parents is pretty normal. As is shouting (just stay calm & say you'll listen when he's not shouting - I need to follow my own advice on that one)

[IsItMeOr]

(waves at youare)

Not a huge amount to add to the sensible comments already made. I agree with youare, and also find it implausible that your parenting is the root cause of your DS's issues.

Explosive child was very helpful to our getting our head around DS's (6yo with ASD) behaviour and gave us a technique that we have been able to try a bit. The best part is that it is not about children with any particular diagnosis, so you don't need to be held up by that.

DS also struggles with writing, so I will also google those retained primitive reflexes.

[Devilishpyjamas]

My ds3 is nearly 11 btw

[Youarentkiddingme]

[lougle]

I don't think this is you for one moment. Not one.

Don't worry about what label describes his behaviours -you've tried that and got nowhere. It may be that he has traits of a few issues but none are strong enough across the board for clear diagnosis. Instead, look at what you would say his issues are (control, anxiety, etc.) and what you can do about them.

[usedtobeaperson]

DevilishPyjamas - thank you. I think we may take a step back from swimming. He loves, loves, loves to be in the water but doesn't like being told what to do so the lessons are a bit tense. I haven't read the book you recommend so have added that to my list of library books.

With regards to the shouting - I know that some of this is normal maybe all of it? Thank you for your suggestion it is similar to what I try to do, it can take him hours to stop which is a bit draining at times!

He doesn't really seek a lot of independence almost the opposite of he seeks my attention and input a lot and finds it really difficult if I can't fulfill his needs for this.

Isitmeor - That book does sound like it may be useful

[Youarentkiddingme]

www.retainedneonatalreflexes.com.au/test-at-hom/

I found this really useful. There are then things you can do to help develop the reflexes. I've seen an improvement in my ds memory by doing some and also some development in him being able to move his arms seperately to each other.

If he struggles to fill his time have you thought of using visual timetables?

I totally agree that using strategies aimed at children with neurodevelpmental disability probably will be beneficial. If you look up all the disabilities he's been assessed for dyspraxia, asd etc and find the behaviours he exhibits and recommended statiegies you should be able to find a way of parenting DS that works for both of you.