HELP! - WORRIED ABOUT JEKYLL AND HYDE SON

[cmuir]

Hi

 

I've noticed lots of little odd things about my son's behaviour (he's nearly 5 and has AS). A couple of examples ... group of neighbours kids are out playing with Robert and they notice some toadstools growing on lawns. Robert straight away rushes over and stomps over the lot of them. No - it wasn't a game, that much was clear! Another example ... out in the garden (this kind of things has happened a lot!) and showing Robert a snail, ladybird, etc. Talk about how unique they are and how we mustn't harm them etc. Each and every time he deliberately flattens them! In each case, he hasn't received attention of sorts as a result of this. I maintain that shouting, etc albeit negative, is still attention and refuse to give him any when he behaves like this. Each time, he's been told firmly how disappointed I am, how the beasties mum and dad will miss it, etc. Why does he actually appear to gain pleasure from being so damn nasty?

 

Also, really getting sick fed up of the cheek, abuse, swearing and threats. He's got one hell of an imagination! All of a sudden things can be really pleasant and calm, next thing all hell is breaking loose on the western front. In most instances, I'm never sure why (others, he hasn't got his own way or something like that). Next minute, he's belting himself in the face or head, banging his head off the solid plaster walls, throwing things, growling and snarling (quite literally!) like a Rot Weiller with gritted teeth, face right in mine shouting abuse! What do I do? I completely ignore it (unless there's danger of someone getting hurt) if in the house. I've found that he calms down if 'fuel to the fire' isn't added ie talking and trying to reason with him (shouting doesn't work either!). Hours, day or weeks later he says he's sorry!

 

Robert makes lots of threats including running out onto road in front of a car (and has actually tried it!). He'll threatens to stab me, cut my throat, etc. Where is all this coming from? No - I don't allow him to watch the Exorcist or Rambo! Already had paediatrician and health visitor rummaging through his Noddy and Bob the Builder DVDs!!! I have a filing cabinet in my bedroom which contains lots of goodies which he might fancy getting his hands on (nail file, scissors, etc). One day I was on the phone to my friend, when Robert came downstairs with knife in hand. I was horrified, but I gave an oscar-winning performance which cut my conversation very short without causing alarm or panic and coaxed offending weapon from Robert by cheerily suggesting we make snowflakes and paper men! On another occasion, he took an ordinary knife and marked his neck. I actually hadn't noticed until he announced to me what he'd done.

 

This behaviour doesn't appear to be a phase (it's a damn long one, so far!) and he is becoming increasingly aggressive with age since he's becoming bigger and stronger. I should add that Robert has always been very unpredictable ie is like Jekyll and Hyde and can go from being calm to furious within seconds for no apparent reason (reports back me up on this). Latest report from specialist says that she feels he may have a 'mood disorder' - what's a mood disorder?

 

What on earth is this all about? I keep getting told 'oh it's for attention'. I consider myself to be fairly astute and know that this behaviour isn't simply about attention. Most of the time, it clearly isn't!

 

Lots of questions, I know, but I'd be interested to know if any of your kids behave like this, and how you handle it. I really like to know what's it's all about, but guess that may be asking too much! Any comments/advice, gratefully received.

 

Caroline.

[oracle]

Both of mine operate on what I call a trip switch and you never know when the switch is going to trip There were times when Matt was younger when I was convinced that he actually gained pleasure from hurting things - including people. That really did worry me. David also has rages and flies off the handle for no reason but I think what you are describing goes one step further than where my two ever go.

 

What is your CAMHS like? Do they have an ASD specialist team. If not then I would seek out someone who is and ask to see them. Don't let anyone who does not really know there stuff add to his dx - eg mood disorder (never heard of this one before and that worries me) I don't know where you live but there must be someone who can help you?

 

As you say he is only 5 and he will get bigger and stronger. We had the knives bit with David but he was 14 plus when this happened and going through puberty. It appears that he has no fear even of doing things to himself - you have to take that seriously.

 

Oracle

[kirstie]

Hi Caroline,

I agree with oracle.You do have to take this seriously. Lewis was very much the way you describe Robert to be. Even down to the knives! We have them hidden away in another cupboard as he was taking them out of the drawer and had even marked himself. I was petrified as to why he was doing it. that particular phase didn't last thankfully.

I went to CAHMS and told them i was worried about Conduct disorder and oppositional defiance disorder, but you know them like i do and was looked at as though i was loopy. They won't give another dx ontop of AS (unless very very neccessary, as they don't think it's helpful!!) in my opinion CAHMS weren't helpful atall.

I did learn though that Lewis's behaviour was far from acceptable and couldn't just blame it on the fact he has AS. He will grow into a teenager who will more than likely be bigger than me and what then?? Let him carry on being aggressive, wait till he thumps me when he gets to 13,14,15? Not atall. I had to regain control of the situation and by god it was hard. But he knows who is boss now, and life is so much happier for everyone.

Robert may well have something co-existing with his AS it's not uncommon but his consultant is the best place to start.

It's really not funny when they're in your face baring their teeth saying awful things, don't get me wrong Lewis still has his moments but i am bigger and louder so he just doesn't get away with it, he has to know i will not tolerate such behaviour and language. I'm not saying for one minuet i bully him into submission but he has to know i will not put up with it, whether that means going onto the timeout chair, no playstation and NEVER moving the goalposts. If i say no i mean no and i have the final word.

Are spectrum having any input with Robert? I'd be interested to know what thay would suggest.

I hope someone can help you with this i know it's not fun and the sooner there is some help available to you the better.

Let me know how you get on,

Kirstie. <'>

[cmuir]

Hi

 

Spectrum have backed out. They were never keen to get involved anyway because Robert was so close to starting school. Nursery and myself agreed that Robert is clever but that holding him back a year would pose a threat to the younger and smaller kids. The challenging behaviour team (CBT) are involved at school. Not impressed so far. Robert has poor short-term memory. Robert was given a warning before losing his playtime. However, timescale which elapsed between giving the warning and the bell ringing was 50 minutes. No wonder all hell broke lose when he was told at bell time he wasn't going out (he'd calmed down during the 50 minutes). School ended up phoning Spectrum and CBT! Point is immediate action should have been taken - 50 minutes was too long! Seems people don't like a parent questioning things. Anyhow, CAMHS had been asked to see Robert by his consultant on 2 occasions. We've just received a letter telling us they will see him, but wait is 5-6 months!!! What am I supposed to do meantime? I've already spoken to Robert's consultant who is taking the matter seriously and has made a referral, but seemingly can't do any more than that. I've got a copy of the report which has been sent which clearly states there is some urgency. Have to say, I'm considering Ritalin. We desperately need something which will calm Robert down and hopefully make him much more manageable. In the meantime, I'll be drafting another letter to CAMHS to hurry them up. Problem is, from what I've read I'm not hearing many positives about CAMHS.

 

??????????????????

 

Caroline.

[oracle]

Four things spring to mind.

 

1. You could ask your Consultant to write to CAMHS again saying that this is now at crisis point. The word crisis is the buzz word. You need crisis intervention along with the school.

 

2. School writes to CAMHS and says that they are also at crisis point and need help and intervention now not in six months time.

 

3. Ring CAMHS yourself and tell them you are at crisis point with this - have a good cry on the phone.

 

I know that I now sound like my usual broken record but the word that needs to be hammered home here is crisis. It's not my buzz word it come from the Government. The things is they are supposed to act before it goes that far. Crying often works isn't this dreaful what you need to do to get the help you need.

 

The other option, and one that works here, is that you go to CAMHS with your son and refuse to move until someone sees you. We have had parents do this on quite a few occassions and while they may not have been seen on that day they have all walked out with an appointment to be seen within a few days.

 

Desperate times sometimes take desperate measures I am afraid.

 

Oracle

[Anastassia Florinevna]

Maybe it's the feeling of power and control. Maybe those kids feel like they're being oppressed. If I felt oppressed at that age I'd probably do something similar.

[aro]

There were times when Matt was younger when I was convinced that he actually gained pleasure from hurting things - including people. That really did worry me. David also has rages and flies off the handle for no reason but I think what you are describing goes one step further than where my two ever go.

 

 

Oracle

 

 

That sounds like lil bat, she will hurt people and animals often , it seems, to see the reaction. She also then repeats the action more and more, so although she is obssessed by animals we can't get her a pet as she has no empathy for other living creatures

She can also can mood at the flick of a switch and attack out of the blue, often laughing at the result

Any intervention fuels her behaviour but it can be impossible to ignore!

 

A x

[kirstie]

Caroline,

you need to get onto CAHMS again. I quite like the just going and refusing to move untill you're seen idea.6 months??? NOT good enough. We did a lot of knocking on doors pre-dx and were given the run around but just keep on knocking and they will have to listen to you.

As for ritalin, when Lewis was at that age i was desperate to get some sort of help, medication being one of them. I couldn't wait for the day he was dx so we could try some meds. I don;t think ritalin is given untill they're 6 or 7 and that is with a dx of Adhd ( as far as i'm aware) I know there are other meds that can be given, but don't hold your breathe. They don't like to give them out unless absoloutly neccessary. Again, you have a fight on your hands.Whats new with our kids? It should never be this hard.

If someone doesn't act on behalf of your son and soon, then they are failing him. It's unfortunate to say the least but in my experience our kids would be allowed to slip through the net if it wasn't for us parents being on the case. I'm afraid a few more headaches may be coming your way but i found having a big gob really helps, i know that sounds terrible but true!

Take care,

Kirstie.

[Nic m]

Hi Caroline, I really feel for you i went through all of this with my daughter for about 3 years and no-one believed me until they saw it for themselves.Most of the time she was angelic and with no warning this would happen in our house.Many things have changed now and i have got my loving little girl back so hang on in there and keep fighting for him.Good luck and very best wishes

Nicola

[pumpkinpie]

Hope you are ok?

[cmuir]

Hi

 

UPDATE ...

 

Had an appointment with Robert's consultant. Let's just say, she has plenty to put in her next report!!! In the waiting room he was trying to intimidate another child, destroy a toy, growling, being abusive, etc. The consultant saw this for herself when she called us in to her room. Robert was growling at her, being abusive, throwing things, deliberately trying to break toys, banging his head off the walls, etc. This went on for about 20 minutes before he finally calmed down, and when he did he was like a different child. The consultant said that she can see how difficult things are for us and she's going to contact CAMHS again herself and insist they see us now (not 6 months as stated in their letter). She was also displeased that they've refused 2 referrals. School holidays have been really difficult. Took Robert away to visit my gran in Arbroath - he found it really hard being away from home. Ended up staying just one night instead of the planned 2 nights. Still ... Robert got on really well with my uncle who has Tourettes. Strange, but Robert seems to pick out people who are a little different and usually gets on very well with them. When we got home, hubby seems to be nagging and moaning at Robert non-stop. It's driving me mad. Robert is never going to be like a normal child and I believe that we have to choose our battles carefully. There are things which can be ignored cause they're not important, equally there are things which cannot be ignored. As a result, I believe his relationship with Robert could potentially be damaging, not to mention how I see hubby. Problem is, hubby is suspected by not just me, but 2 specialists (who brought it up) to be on the spectrum himself. Got a social worker coming around later today and I'm at the stage where hubby has to firstly acknowledge there's a problem, then accept help. I trust our social worker and hope that she can help. Hubby isn't a bad bloke (Robert is a really difficult little boy to cope with), but he needs to deal with things appropriately. Feeling pretty down just now. Always seems to be on thing after another.

 

Caroline.

[Kathrynh]

Your husband sounds just like my partner. Sometimes he winds my son up just for the sake of it and then gets in a foul mood if I moan at him. At other times he plays with him beautifully but he does not seem to notice when my son has had enough. Sometimes I wish I had the guts to end our relationship but then I think that he can't help the way he is and me and our son are his whole world. I dont fancy coping as a single mum either. Sometimes my partner seems to acknowledge that our son is a bit like him but at other times will get angry if I suggest it.

[oxgirl]

Hi

 

UPDATE ...

 

Had an appointment with Robert's consultant. Let's just say, she has plenty to put in her next report!!! In the waiting room he was trying to intimidate another child, destroy a toy, growling, being abusive, etc. The consultant saw this for herself when she called us in to her room. Robert was growling at her, being abusive, throwing things, deliberately trying to break toys, banging his head off the walls, etc. This went on for about 20 minutes before he finally calmed down, and when he did he was like a different child. The consultant said that she can see how difficult things are for us and she's going to contact CAMHS again herself and insist they see us now (not 6 months as stated in their letter). She was also displeased that they've refused 2 referrals. School holidays have been really difficult. Took Robert away to visit my gran in Arbroath - he found it really hard being away from home. Ended up staying just one night instead of the planned 2 nights. Still ... Robert got on really well with my uncle who has Tourettes. Strange, but Robert seems to pick out people who are a little different and usually gets on very well with them. When we got home, hubby seems to be nagging and moaning at Robert non-stop. It's driving me mad. Robert is never going to be like a normal child and I believe that we have to choose our battles carefully. There are things which can be ignored cause they're not important, equally there are things which cannot be ignored. As a result, I believe his relationship with Robert could potentially be damaging, not to mention how I see hubby. Problem is, hubby is suspected by not just me, but 2 specialists (who brought it up) to be on the spectrum himself. Got a social worker coming around later today and I'm at the stage where hubby has to firstly acknowledge there's a problem, then accept help. I trust our social worker and hope that she can help. Hubby isn't a bad bloke (Robert is a really difficult little boy to cope with), but he needs to deal with things appropriately. Feeling pretty down just now. Always seems to be on thing after another.

 

Caroline.

 

Hi Caroline, I'm pleased that at least it sounds like you're now getting the support you need, hope that practical help is forthcoming very soon. <'>

 

I know from experience with my own hubby, that it can take them quite a while to really accept that there is something wrong and that things can't just be fixed. It took my hub a long time before he would listen to me or read any books or even want to talk about the 'A' word, but now he is a brilliant dad with loads of empathy for our son and his problems and accepts him as he is. Hang in there, it might take your hub a little while, but he will get there in the end. <'>

 

Take care of yourself.

 

~ Mel ~

[cmuir]

UPDATE

 

Haven't been feeling well (virus flu-type thing) and was eyeballing a pile of reports about Robert. Got myself quite mad and phoned CAMHS telling them that refusing to see my son on 2 occasions, then agreeing to see him a 3rd time but with a 6 month wait (after having already waited a year!!!) wasn't acceptable. I also had a letter stating that if they agreed to see Robert then we'd go back to the original referral date - yippee! Result, we've been placed at the top of the waiting list. I'm not getting my hopes up though because I've came across a good few useless professionals. Still ... would be 'nice' if this helps!!!

 

Caroline.