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'Manipulative' or special needs?

(26 Posts)
UmmBum Wed 28-Dec-16 12:39:48

Hi all. I'm in a state about my DS (12.) Nobody seems to be able to diagnose him and I've now had 7 years of battles and problems with his behaviour. I'm looking for some advice and pointers about what, if anything, I can do next and how to manage him. I admit rightly or wrongly I've tried hard over the years to actively seek a 'label' for him, but solely in order to try and adopt my parenting toolkit to support him. If I don't know what is 'wrong' - I can't seek to try and do this as well as I'd like to.

I'll try and be as a succinct as I can. At age 5 his biological father assaulted him at which point I left the relationship to keep him safe. Police, Social Services etc involved. DS puts his father on a pedestal and blames me for ruining the family. (Possible attachment issues created here?)

Throughout school he finds it hard to make friends, sabotages most relationships due to having to be in control, and gets violent and aggressive when people don't follow 'his rules.' These rules do not always follow social norms. He used to make train noises (he was obsessed with trains - CAMHS said control/safely blanket rather than ASD trait) instead of answering appropriately. Talks over teachers and peers and is desperate to always be the most knowledgeable, first at everything, sets himself unrealistically high standards but deep down seeks himself as a failure and 'rubbish at everything.' (Self esteem issues or ASD?) Has ripped up work, refuse to do homework, throw chairs, safe harm, etc.

He point blank will not discuss emotions, struggles with eye control, and gets extremely anxious. Behaviour at its worse during transitions, new or intense situations. Airports, crowded places or new social situations can be a nightmare - he runs away without telling anyone what is bothering him, bolts off and puts himself in danger at times with this. But not always - just sometimes, but we cannot seem to pinpoint a pattern as to what the triggers are.

Meltdowns are tremendous - physically refuses to move, throws himself on the floor, cries and screams (several times a week), throws things and hurts his siblings with no holding back at all. Meltdowns are at their worse when he has had a stressful day school, when hungry or tired. I have 5DC and DS is the eldest. The others do have their tantrums too of course, but nowhere near DS and they are over issues that I would see as 'logical' - whereas DS can have meltdowns over things that appear to be a normal request. Honestly, it can be as simple as 'please hang up your coat.'

Often says he feels suicidal, only lives for his i-pad and minecraft/pokemon games. We have the mother of all tantrums by far outside of 'normal' scales around his refusal to come off despite being given clear limits around its usage and countdowns to when he needs to put his devices away.

Now at high school, they have been great and have given him a 'timeout' card to use and weekly anger management meetings - is is bright. Passed his 11+ and is in a grammar school. Nowhere throughout school has any professional agreed he has ASD though. They agree he can be violent (assaulting other children, PE/sports is where he loses it most of all, 'trying to negotiate classroom boundaries' etc) but they all blame it on behavioural/emotional issues (and parenting too.) But how do you parent a child like this? I have read many many books, tried different techniques etc but have found the only way to manage him is a proactive approach to manage situational factors before the meltdown happens. All professionals agree he is highly manipulative (it took me a while to realise this,) and he cannot seem to show any remorse or take responsibility for his actions. It seems that academically he knows it is wrong, but he sees red and cannot control himself. I am worried he is seriously hurt somebody one day. He has taken knives to his younger brother and draws blood through fighting.

He is banned for the local sports centre for throwing equipment and being violent to other children. We cannot really visit anyone's houses as he cannot share, take turns, or be co-operative with other children, and normally ends up hitting them. We have removal of privileges and other consequences but it doesn't make a difference.

He has had counselling (three times,) has been assessed by CAMHS for ASD who said it was inconclusive, and has more recently had a Targeted Youth Support Worker. He refused to engage with her as rebuffed all her questions with 'smart' answers where he picks apart the grammar or sentence structure of what is being said to avoid answering or was too rude and abrupt to make the sessions worthwhile. (he is like this with everyone) So that support is no longer in place.

I personally feel he has ASD of some form - PDA in particular, but others say there is nothing wrong with him aside from being naughty (thanks!) or that this is all a result of his father assaulting him. I think he had underlying ASD which made what happened with his father harder for him to cope with. We are waiting for CAMHS to reopen a case for him, but I'm thinking in the New Year to try and see someone privately. The whole situation is very complex and I try so hard to unpick it, but I really worry for him. My friend is a student social worker and she commented that she didn't feel he'd ever be able to have a relationship or hold down a job with out being abusive. This is course is heart aching.

Any ideas as to what approaches work?

CloudPerson Wed 28-Dec-16 12:58:22

As I was reading I was thinking PDA, he sounds like my son.
For strategies the PDA resource is very good.
We do things like reducing demands (using lists instead of telling him what to do), read the book The Explosive Child, give options etc.
As for CAMHS and school, I don't know what to advise as we've come up against a brick wall with both of those. CAMHS often seem to have an anti-ASD agenda and come up with all sorts of spurious reasons whilst the most obvious one is staring them in the face.

Ds was diagnosed privately (after the NHS assessment ignored all but school's opinions and information was left out of his reports). We saw Dr Judy Eaton (clinical psych) and Dr Jo Jones (paed) and can thoroughly recommend both.

There are some good groups on FB, if you search pathological demand avoidance a few should come up.

The comment from your friend sounds very unhelpful, and I would ignore it!

CloudPerson Wed 28-Dec-16 13:00:17

The PDA resource

CloudPerson Wed 28-Dec-16 13:01:03

PDA mindmap which we found very helpful. Aimed at schools but easily adapted to home.

JellyFishFingers Wed 28-Dec-16 13:03:18

Could it be ADHD or pda? There are masses of similarities with all these disorders. He certainly sounds very hard work - it must be relentless, lonely and difficult for you. You have my sympathies. Dc has complex SN and it is hard enough with a diagnosis so this must be horrendous.

Have you read "The Explosive Child" by Ross Greene? You may find it helps.

youarenotkiddingme Wed 28-Dec-16 13:07:08

Have you tried pda strategies? Have y also looked at dawn heubner books "what to do when....." Series. He may engage better when it's more workbook related than actual discussion?

Do you have a pead or Camhs consultant who you could actually write to and ask them specifically how they suggest you support your Ds?

Ask them outright if they think it's behaviour why they think he behaves this way, how they will support him (and continue to support him until it works). Don't accept X doesn't work. Ask them what plan B is then. They have a responsibility to support him.

OneInEight Wed 28-Dec-16 13:54:34

Do you have my sons? They got an AS diagnosis age 10 and are very, very similar.

zzzzz Wed 28-Dec-16 15:24:03

Your social worker friend doesn't sound helpful.

What difference would a dx make?

Bananasinpyjamas1 Wed 28-Dec-16 22:59:56

Wow very hard work! My son has PDA, even though it isn't really diagnosed. However at 12 I imagine that you are at crisis point. I'd be getting as many people and professionals as you possibly can on board for this, don't hold back! If you can afford it, certainly get private diagnosis and help - as otherwise your son will be getting in more serious trouble from now on and at least you are being very open and asking for help. Shout from the rooftops if you have to, the sooner you get something going for your son the better. If he has a diagnosis, at least you will have opened up some avenues for extra support and some kind of structure to help navigate his behaviours.

Also get some respite if you can for yourself. It sounds exhausting.

zzzzz Wed 28-Dec-16 23:44:32

I think sometimes the easiest way to proceed is just to use all the known techniques for the dx you are thinking is likely and see if it helps. For us dx itself made very little practical difference. You don't need permission just try

Bananasinpyjamas1 Thu 29-Dec-16 00:39:29

This is too serious to just recommend self help.

zzzzz Thu 29-Dec-16 01:01:47

Here (Devon) almost all support is provided at home by parents. If we didn't "self help" as you phrase it who on earth do you think would provide the support? confused
It took (many) years to reach dx for DS and he is much more overtly disabled than many. I would always advise parents to start putting in support before dx. What rationale is there for waiting?

PolterGoose Thu 29-Dec-16 08:28:04

Message withdrawn at poster's request.

Bananasinpyjamas1 Thu 29-Dec-16 10:45:41

You are both above very antagonistic to any posts that say something different to your own and previously actively discouraged the OP from seeking help from professionals. Time to stop hogging boards with petty arguments. The op needs all advice but not just told to get on with it herself. If she does not advocate for her son then it is very likely she will go under with the stress, she is prepared to get a Dx and possibly more privately.

Just go for it OP, get everything you can.

Ineedmorepatience Thu 29-Dec-16 11:05:26

I also recommend the Explosive child book and PDA strategies.

@Bananas, its great to recommend private to people who can afford.

OP my Dd3 was dignosed at 9 and apart from a couple of social skills groups in primary school and a speech and language group for one hour a week in secondary we have had no therapeutic input at all.

Empower yourself and learn as much as you can about different ways to support your son.

Ineedmorepatience Thu 29-Dec-16 11:06:17

Meant to say Dd3 is 14 now! And out of school!

zzzzz Thu 29-Dec-16 11:21:45

Bananas what rationale IS there for not educating yourself and providing support as soon as possible? I'm not sure why you think I am being antagonistic or "hogging the board"? I answer as many threads as I can. I wish others would do the same. It's a dreadful lonely world being at home worrying about a child with additional needs.

zzzzz Thu 29-Dec-16 11:26:35

I'm not sure IF I did previously discourage OP from seeking help from professionals but certainly I haven't found them amazingly helpful and get quite good support here so I might of expressed that. I feel 95% or more of what has really helped DS has come through home.

zzzzz Thu 29-Dec-16 11:27:27

Might HAVE.....

PolterGoose Thu 29-Dec-16 11:50:34

Message withdrawn at poster's request.

OneInEight Thu 29-Dec-16 11:58:30

Having attempted to engage with upwards of thirty different professionals for ds2 (we lost count after this) I can see that zzzz approach makes a lot of sense.

If you have a child who refuses to engage with professionals there is sadly little on offer from either social services, youth targeting support or CAMHS as support they can offer is short term because of high demands on their service. Whilst we did get the bit of paper with a diagnosis by following this route I suspect it did actually make ds2's anxiety and mental health worse so you do have to think carefully about whether there is a good chance of support and positive outcome. Perhaps we just have poor services in our area. Currently, we are taking a breather from seeking help for ds2 and he is actually doing better ironically.

We have had more luck with seeking support via the education system at least for ds1 (ds2 is home educated after successive attempts to find a school that could meet his needs failed) and for a demand avoidant child this is where I would place my energies. Private if you can afford it is another option - indirect interventions like equine therapy have proven more beneficial for ds1 than sessions where the intent was more obvious because the latter increases his anxiety so much that he finds it impossible to engage appropriately. Another intervention that helped for a short time was social services providing an adult buddy for the ds's to enable them to have some sort of social life and fun outside of home. Again, ideally needs to be long term - ds2's trust in his buddy was destroyed when he was unable to come for a few weeks and was never regained. Cost cutting means neither has one at the moment.

youarenotkiddingme Thu 29-Dec-16 12:43:41

Seriously? Bananas children spend most of their time within the family home/life. Parents of course need to be on board and knowledgable in what helps their own child. That goes for any child.

Would you suggest a parent of an NT baby didn't read a parenting book because they have a HV?

Seeking and asking for support is fundamental for disability as it is with any medical diagnosis. But also knowing how to manage yourself and what works for you (everyone is an individual) is fundamentally important.

You don't get a diagnosis and 24/7 support and care alongside it.

Being rude to 2 posters who take the time out to advise others on what has worked for them is unnecessary and not in spirit of these boards.
Read advice and take what works for you.

CloudPerson Thu 29-Dec-16 14:23:09

Some areas are better than others, in our area going ahead and finding strategies that worked meant that CAMHS thought we were obstructive, because according to them we should have been very strict parents with rigid boundaries, they weren't interested that we'd done that and nearly broken up the family in the process!
Because ds masks in school, support is not forthcoming because no-one can see how distressed he is, so for us diagnosis was vital as we can't support him solely from home, he needs understanding from school as well in order to keep his anxiety levels manageable.
I totally agree with Polter that most experts aren't clued up about PDA or autism, but we've found that the diagnosis has meant fewer people question is and assume we're making everything up (apart from CAMHS hmm)

Bananas, I really don't understand why you're attacking two very well respected posters here. It's not on when both spend a lot of time supporting others here and sharing their experiences.

Bananasinpyjamas1 Thu 29-Dec-16 23:32:06

No I've never advocated not using self help. But just advising self help and discouraging anything else the OP can advocate or obtain is not helpful

Why would I report posters?

However the main reason I don't use the SN boards is the very tiresome argumentative two posters above who just clamp down on good advice and I'm very tired of it. It's not a bun fight. Chill out!

Ineedmorepatience Fri 30-Dec-16 10:52:23

No body on here has ever discouraged posters from seeking professional help! We just know how hard it is to come by and how let down people feel when the so called proffs cant offer any real help!

Self help and supporting each other has made many peoples lives liveable after yrs of struggling!

bananas you dont have to be here and you say yourself you "dont use the SN boards" and yet here you are!!

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