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DS2 - need help and advice please

10 replies

Faverolles · 03/12/2013 10:46

Ds2 is 8. Two years ago (May/June 2011), he was put on a paediatric asthma drug (singulair), which he reacted very badly to. He became very violent and aggressive, and at home had almost constant autistic type escalations and meltdowns.

We took him off the drug in January 2012. There was a bit of improvement, but he still has violent, aggressive moods most nights and some mornings at home. Weekends are generally hellish.

At school he behaves. I've asked him why he's calm at school but not at home, he didn't understand, but says the crossness builds up during the day, but he can't show it at school because there are teachers there. Home is home, so he can let it out there.

When he is angry, it ranges from us being able to manage his behaviour by keeping him busy and the other dc out of the way, to him shouting out, swearing, spitting, kicking, punching etc, threatening us with awful violent deaths, shouting that he's going to kill himself. Often when it gets to this stage, he ends up in a dark corner sobbing and needing reassurance and cuddles.

When he's out and about, he can struggle when there are lots of people, so shopping, visitor attractions, and will appear to be uncomfortable, jerky, eyes darting about. He will sometimes try to overcome this by shouting out rude, inappropriate things, and behaving badly. For this reason, we tend to avoid busy places.
If he's in a 1 to 1 situation, say at the drs, he will be hyper, very awkward, sometimes becomes something else (often a T-Rex). He will be polite, but quirky. If we are somewhere like that with all dc, he will say inappropriate things and appear to show off to his Db and dsis.

He is being assessed at school, but I have been fairly useless and don't actually know what for and what outcome to expect or anything.
As his behaviour at school is good, we have been asked to write down any incidents for 8 weeks (to cover Christmas holidays).

Last night, ds came home very quiet and withdrawn, looking angry but also confused and sad. He kept being rude to me.
He told me at bedtime that the teacher told him off for an incident we had with him over the weekend (it was explosive, but with the benefit of hindsight, dh and I feel we understand why) which we had already dealt with, and also told him that we were writing notes to school about his behaviour.

I was happy for his teachers to read the notes, as it would give them an understanding of what we are dealing with, but also, due to the very specific cause of his difficulties, we are finding that no-one believes us, or dismisses us as crap parents.
I am in contact with other parents of dc who had the same reactions to the same drug - their behaviour and things these children do and say are uncannily similar.

Ds2 has an appointment with CAMHS in January - we already have contact with them for ds1 (was badly bullied and ended up anxious and depressed). They feel that he is too young for CBT, but we as a family might benefit from family therapy, to help us manage things better. They also feel that there may be other contributing factors as we have had a shocking few years (close family bereavement, ds2's dramatic reaction to singulair, new baby (although a good thing, still unsettling maybe), ds1 having to be taken out of school, dh having a stroke at the beginning of this year)

I'm seeing ds2's GP next week to ask for a referral to a paediatrician.

Beyond this, I'm lost. We scrape through life, but it is so stressful and difficult sometimes. No-one believes us. Even with the diaries we have written, complete with insights from ds2 himself (how he feels when he's angry, and afterwards), yet people still think he's a naughty boy who is in complete control of his outbursts.

What do we need to do?

(Thank you to anyone who manages to get through this epic post!)

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Faverolles · 03/12/2013 10:53

Ds2 is aware that there is a problem - he knows he doesn't feel right most of the time.

I'm unhappy that school have told him about the notes, as from my point of view, he is happy at school and confident, with lots of friends. He feels part of the gang.
I don't want him to feel that he can't be himself there, because he is being watched.
I'm also unhappy because, whilst if was happy for the teacher to read the incidents, they are first and foremost there to help the assessor see if there is a problem, it is completely inappropriate for ds2 to be told about them, and to be told off for something that happened at home, two days previously.

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PolterGoose · 03/12/2013 18:50

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Faverolles · 04/12/2013 15:38

Thank you Polter :)

I'm going to the GP on Tuesday, so will push for a referral.
Do we need any CAMHS involvement at all?

I'll look for the book now.
I'm taking to the teacher tonight hopefully, so may come back with more questions!

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Faverolles · 07/12/2013 14:53

I've been out today with ds2 on his own. I've noticed a few things, which I thought I'd write here - I suppose then I have my ramblings in one place!

We were playing mini punch (hurrah Hmm). He mini punched me but I didn't see it, so jokingly teased him for cheating. He immediately flew off the handle and punched my leg hard.
Explained later that he thought I was being mean to him.

Outside sainsbury's, we were accosted by a big issue seller, I said sorry, I've got no cash, ds said loudly that I did, that he'd seen it, and was cross that I shushed him and whisked him away.

On the way to the car park, ds went through some bushes and hid between two cars and waited, ready to jump out and scare me. I ducked down without him noticing and raaaarghed at him. He immediately screamed at me and flew at me ready to punch me.
When he calmed down, I asked what he was planning to do to me - jump out and scare me, I asked how he thought I would feel - scared but find it funny. I asked why he didn't feel like that - he looked at me like I was an idiot and said "because I didn't know you were going to do that"

Sitting in the car before going into morrisons, he looked worried and said he didn't think he could go in, as it made his ears hurt. He went in with his hoody up over his ears, and stood on the trolley between me and the trolley, pretending we were a horse and cart. Was fine until about half way round when he started getting angry, and jumped up at me, accidentally bashing me on the face. We sped up, bought the stuff and left.

I've been reading the explosive child, and have discovered that ds1 is also a very inflexible child, but he doesn't react as violently as ds2. It explains why life at home is so difficult, as they both spend their time offending each other and neither understands and flies off the handle at each other all the time - a proper vicious circle!
At least we have a starting point now to work from (I hope!)

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Faverolles · 07/12/2013 15:00

He also flew off the handle that my mother is going to pick him up from school on Tuesday so I can talk about him to the GP

He was really very angry about it, clenching his fists and tensing up all over.
I asked him why it was a problem, he replied through gritted teeth, in complete monotone ."you....pick....me....up....from....school"
I explained that I was busy, and that Grandma (who he gets on with very well) was looking forward to getting him. He said - no, grandma doesn't pick me up, you do.
Managed to persuade him by letting him choose a special pack of biscuits (but they're not biscuits, they're Jaffa cakes, so not biscuits) for when he gets home with her.

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PolterGoose · 07/12/2013 15:21

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Faverolles · 10/12/2013 20:55

Been to the GP, he's putting through the referral.
I feel quite wrung out. I was half expecting him to tell me it was all crap parenting, so it's sort of a relief that it's done, but feels sad too.

Also saw the HT today, who was lovely, said they'll do whatever they can for him. She's also asking another mother if I can talk to her. Her ds has autism, so it would be good to get some advice.

I don't know if many people are reading this, but I could do with some opinions on whether I tell ds what's going on (my instinct says yes), and if yes, how to word it.

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Faverolles · 10/12/2013 20:58

Oh and re. the sensory issues, a lot of grouped up noise, like being at a supermarket, bothers him, makes his ears hurt and, from what I can gather from his description, makes his brain feel tense and jumbled.
He often says his eyes sting, but not sure if that's a sensory issue or tiredness (we struggle to get him to bed)

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claw2 · 10/12/2013 21:27

Yep all sounds familiar behaviour. I tell ds we are going to appointments and the purpose ie CAMHS to help with your worries, GP to get cream for your cuts (self harm) etc, etc.

I do however, make a point of never speaking about ds in front of him, as if he isn't there, as tends to happen during appointments. I don't take him to a lot of appointments unless they actually need to observe or talk directly to him.

Faverolles · 11/12/2013 17:43

Had an appointment at the hospital today for ds2's asthma.
They want to allergy test him and take him off all his drugs for two weeks so they can do that, and also get an idea if he's reacting to any of the drugs he's on. I'm terrified at the prospect. His asthma is barely under control on four different drugs. He's going to have open access to the children's ward, so we don't have to mess about getting him sorted.

Come home, and ds1 and 2 are just warring constantly. Both are intent on pissing the other off, whilst both react immediately and cannot ignore each other. I have split them up. Ds2 now has a duvet cover wrapped around his head and face and seems more peaceful like that Hmm

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