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Reposting from chat. Please help!

(254 Posts)
Faverolles Fri 10-Jan-14 22:43:31

Ds2 is 8, being assessed for possible ASD. He's fine at school, but violent and aggressive at home.
We have some times when things are relatively calm, and we feel that we know what we're doing, then we have weeks like this week, which are absolute hell on earth, and drive us to near breaking point.
I don't know if it's a normal back to school thing, but every evening this week, we've (all the rest of the family - me, dh, ds1, dd and ds3) been threatened, punched, slapped, bitten, spat at, sworn at, insulted constantly.
I can't cope. I know he'll calm down a bit at some point, we'll still have this behaviour, but not as intensely. But for now, the whole family is struggling.
We've explained to the older dc (13 and 11) that they need to back off from ds2, when he's feeling angry, he needs space.
Ds1 in particular seems to think that we are favouring ds2 because he gets more time with us, but this week he has only had more time because he has been wound up to the point of being a danger to himself and the others, and one of us has to help him calm down (he usually ends up sobbing that we should just kill him) and basically supervise him.
Ds1 cannot resist winding him up, he doesn't seem able to back off, so we have more outbursts than we should probably have.
I don't want ds1 and dd to feel responsible, but I want them to understand that how they react to him makes a huge difference to the severity of ds2's behaviour - is this unreasonable of me to expect this? (Really, I genuinely want to know!)

Dh and I are relatively new to this, it's only been a few months that we have allowed ourselves to see that there is a problem, and not a naughty child/crap parent situation.
There isn't really anyone in RL who gets what's going on, mostly they think we're soft on him(we're not), or suggest that we get really cross with him (like we don't do that already, but it doesn't work and makes the situation worse)
He has been referred to CAMHS, but that could take months.

We have noticed that we can do practical things that have helped - putting a tent over his bed, giving him opportunities to tell us how he's feeling, and do something calm with him if he's feeling angry, not taking him to the supermarket etc.

This week is off the wall though. Please, please tell me what else I can do to help him. He's such a lovely little boy when he's not angry.

^ I posted the above in chat, I had a thread in here a while ago, but I've lost it.
I really need practical advice. I feel like our family could break up over this, and I don't want that to happen.

Faverolles Fri 10-Jan-14 22:46:04

I think I've made out there that ds1 is his main trigger - he's not, anything and everything seems to be a trigger at the moment, but ds1 (who is quite similar but without the violence) finds it nigh on impossible to ignore ds2 and not react to him.

AttilaTheMeerkat Sat 11-Jan-14 08:56:16

Your DS should be referred to a developmental paediatrician if this has not already happened. CAMHS have their place certainly but ASD (if this is indeed present) is not always their area of expertise and reports generally on them can be mixed. GP needs to refer you urgently to such a person now (i.e the developmental paed).

Any chance at all of actually paying to see such a person privately?.

I would also approach the SENCO at school and sound this person out as well. What the SENCO and school like, is he able to fully access the National curriculum?. My guess is that currently he is unable to do this fully and is struggling to keep up with his peers. He could certainly well be struggling with all the playground and unwritten social stuff that goes on within such places.

I would talk to the National Autistic Society and seek their help too; if you think ASD is present it likely is. Parents are not usually wrong.
I would also talk to them about your other children and how they can help their brother too. They however also need support and they need your due consideration.

I would also consider applying for DLA for your son and use the cerebra guide to do so.

Its absolutely NOT anything to do with your parenting either. I would also state these types of situations re (perhaps total) compliant at school and violent at home more often than not arise because their additional needs at school are simply not being met. He has gone unnoticed at school. It may well be that your son is bottling up all the frustrations of the school day and lets out all his anger and pain of that at home.

I would also now start applying for a Statement from the LEA whilst you still can as you also need to think longer term i.e secondary which is not all that many years away now. How would he cope in a secondary school?.

Bumping this for others as well.

Keep posting here and good luck!. Remember that you are your child's best - and only - advocate here.

PolterGoose Sat 11-Jan-14 09:30:34

Message withdrawn at poster's request.

OneInEight Sat 11-Jan-14 09:58:01

The short answer is help does not arrive from anywhere fast so your immediate first step is to read as much as possible about ASD and behavioural strategies yourself. The Books Polter suggests are very good. We have also found the books by Tony Attwood useful to give you a good understanding of Aspergers.

You also rapidly learn that to move through the system you have to keep hastling people as those who shout the loudest get seen the fastest. On Monday ring up CAMHS and check (a) They have got the referral and (b) If their service is the appropriate one in your area to give diagnosis (no point waiting six months in a queue only for them to say it is the job of the Community Paediatrician's) and (c) When you are going to be seen.

Does your son also have problems at school and what are they doing to support him. Set up a meeting with class teacher and SENCO. Ask for him to be seen by an education psychologist and insist on an IEP and Individual Behaviour Plan. Start writing a diary of behaviour. This will help you get diagnosis and for statementing to get educational support.

We found we couldn't get autism outreach support until we had a diagnosis but worth asking if school can refer. Otherwise we have found the Autism West Midlands helpline (and website) a useful source of information as they will chat to you without formal diagnosis.

If he is hurting either himself or other members of the family then refer yourself to social services. If they get involved they can offer some support even without a diagnosis e.g. we have had help from a charity called Spurgeons via them on behaviour management and they have just put in a buddy system for my ds's to give us all some respite. They will also put pressure on people like CAMHS to see you quickly so involvement is worth it alone for this.

To give you some hope that things can improve we found that as soon as ds1 was placed in an appropriate educational setting (BESD school) his behaviour improved both at school and at home.

Ineedmorepatience Sat 11-Jan-14 10:17:00

Hi faverolles, In my experiences a large percentage of children with Asd or traits of it who are fine at school and aggressive and angry at home are actually not fine at school. There needs are often not being met and they are having to struggle to get through every day.

Many of them put a mask on at school and follow the rules because they know that is what is expected of them.

But, this has massive consequences at home because all the pent up frustrations and difficulties of the day have to escape somewhere and home is the only safe place to allow that to happen.

If this is cycle continues for long periods of time it could be damaging to your sons mental health and to the family as a whole.

One is right you have to shout the loudest to get heard, sadly. You need to be ringing people every day. I find offering to attend clinics at short notice can help as you can be offered cancellation appointments.

Definitely go and see the SENCO, this is not about your parenting, this is about getting your childs needs met.

Keep coming on here, it really is the best possible source of information, advice and support.

Most importantly, be kind to yourselves as a family, put inot place some strategies which are known to work with Asd, you cannot do any harm and they could be life changing, they were for us.
You are already doing some great stuff with the tent and the time to talk.

Good luck smile

Sneezecakesmum Sat 11-Jan-14 11:42:16

Can you provide him with a safe space where he can go to calm down. Do sensory things help him. I guess a sensory room is out of the question if there are 4 children. The older children must stop aggravating the situation, they must understand that he gets more attention still if they wind him up and set him off.

Faverolles Sat 11-Jan-14 11:46:17

Thank you for all the replies.

He's doing fine at school, slightly above average.
He has good friends, boys he has known since he was 3 or 4.
He's fine with people he's familiar with, friendly, sociable, funny, popular.

We've been writing a diary over the last few weeks. It was suspected that the holidays would be dreadful. The week surrounding Christmas was hairy, but there was lots going on, family meet ups, stressful turkey cooking sessions, but the week after was relatively calm.
His week, back to school, it is dreadful, so I think there is definitely something going on at school.

Faverolles Sat 11-Jan-14 11:53:04

The older dc are aggravating the situation (dd has been kicking off big time this morning), but ds2 has stayed calm today.

I've tried to explain to dd, but she's still upstairs ranting away. She says that all he things that ds struggles with, she does too, which I understand she feels he gets all the attention, and everything is about him, but when he kicks off, it sort of is about him, because he is such a danger to himself and everyone.
I do think there could be something in it that our older three have problems too, ds1 and dd both have anxiety and are very similar to ds2, but they're not aggressive (just very, very shouty hmm)
I don't have a clue how to handle all of this to be best for all of them.

I have tried to arrange with the other dc that ds2 has the dining room as his safe place - he can go and paint, or take some toys or something in, but this seems to be fuelling them that this is further proof that he is being favoured.
Both dd and ds1 are happy (mostly) to spend time in their rooms alone, ds2 is terrified of being upstairs alone, so I thought this would be suitable for all of them, but clearly not.

Ineedmorepatience Sat 11-Jan-14 12:14:43

Really feel for you faverolles My Dd2 has always struggled to understand or have any empathy with Dd3 even since she was diagnosed with Asd.

Dd2 is allegedly NT but she is a teenager!! She has amazing empathy with her friends and is a lovely person but she hasserious jealousy issuse when it comes to Dd3 and can make her life very difficult.

You have come to the right place for understanding and support. You will never be alone on this board, someone is always going through something similar.

Good luck smile

Faverolles Sat 11-Jan-14 12:41:49

Thank you x

OneInEight Sat 11-Jan-14 13:10:27

The other thing I missed is try and find a local ASD support group near to you. The one I go to has lots of parents attending pre-diagnosis and is a mine of information for how services work in the local area, which schools are supportive and what behavioural management techniques have worked for them. It is also good to be able to talk to people having similar problems and who understand it is not just bad parenting.

Ineedmorepatience Sat 11-Jan-14 15:01:34

Yay to that one grin

Skylar123 Sat 11-Jan-14 15:11:23

I have Ds aged 7 yrs dx hfa and dd aged 15 NT. My dd can make situations at home with Ds twice as bad as she will aggravate the situation and then state that Ds is my favourite child. She will also sometimes wind him up. I try to help her not feel left out but it is difficult. She will thump back or react to Ds when he is being aggressive and will not understand why she can't do this. Of course this makes the situation 10 times worse. My dd alone is very difficult but I put this mainly down to her being a teenager. Her hormones are all over the place.
My Ds is also relatively fine at school although we are just realising that he is not as fine as we first thought. He is not aggressive at school and the senco for many months did not agree that Ds was on the spectrum at all. The class teacher recognised a few social issues and that he was struggling with literacy and maths but all else was fine. Because of the private dx I sought , which I did because I could see the nhs one wouldn't come quickly and the pushing, meetings , appointments I artanged with the school and other professionals I finally have the school on board. I knew I was right and if you do your research and think that you are too you have to not let people tell you otherwise. They will, they will imply it's your parenting, they will tell you he is just a boy, but if you believe you are right you have to rise above it and do it for your child. No one else will. We have gone from nothing at school, to an IEP, play therapy, social story time once a week, extra help with literacy, spld assessments, computer time to ease writing and lots recommendations being put in place. This is in a space of 6 months.
I thought I was going mad at first I couldn't understand why Ds was being so good at school and so difficult at home, I blamed myself for a short period until I spoke to people on here and some profs that specialised in ASD.
It turned out I was right and actually some of the signs were always there at school to but Ds masked them well and still does to some extent so he went unnoticed.
Good luck with it all. It's hard work in every way. This board is a saviour, I can't thank some of the posters on here enough for the support, advice and their knowledge.

Faverolles Sat 11-Jan-14 16:12:50

It's very reassuring to hear that other siblings are behaving like this.

How would I go about getting a private diagnosis?
The GP has referred ds to a paediatrician through CAMHS, but the waiting list is 3-7 months long. I'm not sure I can keep going that long.

I don't think ds's teacher will be on board with any support or change unless there's a dx in place, as she simply doesn't believe there's a problem.

Yy to parenting and he's just a boy, and also that he can control it at school, so he can control it at home, he's just choosing not to. And constant "he needs to run, let him run it off" from someone. He runs. He runs like Forrest Gump some days, but he still comes home, gets angry and tries to beat us all up! Exercise doesn't help him control anything.

I've found a local ASD centre, I'll give them a ring next week.

Dh and I spent months tearing our hair out and not understanding why things have got so bad, blaming ourselves, blaming ds for being naughty.
It seems so obvious now that there's something else at play (although it's obvious to us, because we're the only ones who see the full extent)

Skylar123 Sat 11-Jan-14 16:54:59

You shouldn't have to get a private dx. It will take a while though to get through the nhs system. I chose to do it because I needed to know for sure. We are still in queue for nhs dx. First appointment with paed was feb 13. We're looking at asd assessment may 14. Also have just been referred to camhs as Ds has started to refuse to go to school and is showing very high anxiety. If you do get a private dx make sure you do your homework with who you use and it's not cheap. If money is not a problem that's good but if it is save your money for other things your Ds will more than likely benefit from. It's good you have found a group to attend, go and see what others mothers experiences are.

Have you actually spoken to the sch senco as you should do that.

I had been telling sch about my worries with Ds since nursery , mainly because he never made friends, cried when leaving me and his play was very independent. I had given the sch senco 2 pages of a4 paper back in 2009 listing everything that was 'different' about him. No one did anything about it. Just the usual rubbish.

You can get help and things put in place for your Ds without a dx I'm sure others on here have. They will be better to advise you as I'm still quite new to this game too. Good luck

Faverolles Sat 11-Jan-14 23:11:16

Money is a problem, so I think we'll go with waiting!

We've had a relatively calm day today, he's been a bit on edge, but manageable and even went to bed sensibly and before 9 o clock (a minor miracle after the week we've had!)

The SENCO at school is the ht, she's been very helpful all the way through.
I'm going to try to see her next week to ask about anything that can be put in place now.

Faverolles Mon 13-Jan-14 10:26:09

We had an awful night last night.
Rang CAMHS this morning to try to speed up Oscar's referral, to find out that the GP has referred him to the wrong place.

At the appointment I had to ask for a referral, I asked twice if CAMHS was the appropriate place, he said yes, everything like that goes trough CAMHS the twat

So we're no further on sad

I'm waiting for the GP to ring me.

We can't cope. Dh had a stroke last year, at the moment we are in a state of constant stress, and really can't cope.sad

I spoke to a local lady who is involved with a special school. Who told us about the amount of help there is available, but only with a diagnosis.
Some people often ask (in a "what on earth are you doing that for" kind of way) why we are looking for a diagnosis, what it's going to do to ds labelling him.
I'm not wanting to label him, I'm wanting help before our family is broken sad

PolterGoose Mon 13-Jan-14 14:03:12

Message withdrawn at poster's request.

Faverolles Mon 13-Jan-14 14:17:59

I've spoken to the dr, who has hopefully now sent the referral to the right place.

We keep trying things, but certain things we do seem to make the situation worse, as the older dc get angry that we're favouring ds2 again and buying/making him something else (ear defenders, tent over bed, etc)

We're really stuck as to how to deal with hi getting aggressive all the time and swearing at us - if we pull him up for it, it escalates the situation. What should we be doing?

I mentioned this to the ht this morning, who said from their point of view, there have been no incidents this week (last week actually), but if I've understood correctly, there don't actually have to be any incidents, as just being there is stressful.

I asked ds this morning if there was anything at school that made him angry, but he didn't think so - is the stress at school likely to be something that he can pinpoint?

I'm going to make him a den in the dining room that is just his (cue fireworks from older dc), and try that, see if he calms down.

I know I'm being a moaning old trout, and people in a far, far worse situation than we are in right now, and for that I am grateful. I just wish life wasn't so bloody hard sad

PolterGoose Mon 13-Jan-14 14:24:18

Message withdrawn at poster's request.

popgoestheweezel Tue 14-Jan-14 17:49:40

I can totally identify with your experience. He sounds very like my ds (7 dx of ASD, PDA and ADHD) until the last few mths he kept a lid on things in school and was terrible before and after school, I used to start shaking when it was pick up time as I knew he would be an absolute monster and attack me, kicking and screaming as soon as we left school (it often even started in the playground). Things hit an all time low over the summer and we were at rock bottom. It has got a lot better now that he is on medication for the ADHD.
I would say keep ringing CAMHS or CCHS (whoever you've been referred to) asking for an emergency appt. The school nurse was helpful to us too. Talk to the Senco and see what help they can give, ds was clearly super-stressed by school but for a long, long time they thought he was fine. Lots of children keep it all in and then explode at home. Those who shout the loudest get the help soonest, but you will have to be patient and tenacious too.
DD goes to a group for siblings of children with ASD (she's there now) and I do think that helps a lot. It is incredibly hard as it does look like ds gets loads more attention than she does. Spending 1 to 1 time with her helps too, although I'm sure that's much harder with four children. Maybe if you can just find five minutes a day to spend alone with each child it might help?
Try keeping a diary so you can identify any triggers. It might also be worth looking at his diet to see if there are any triggers there (sugar and additives being the first suspects, followed by gluten and lactose). I always recommend supplements as well: omega 3, multivits and behaviour balance DMG from detox people which all really help my ds.

Faverolles Tue 14-Jan-14 21:16:10

Whoever recommended The Red Beast - thankyou!
It arrived today and we read it tonight. He started off thinking it was a silly babyish book, but in the end really identified with it, especially the hitting, spitting, swearing bit!
He wants me to get started on a red beast box for him.

Dh and I are going to CAMHS tomorrow. It's a family therapy session, but they're ok with us using it to try to work out ways to get some short term support for ds while we're waiting for his referral to come through.

At school, when I've suggested that he is stressed out by being at school itself, I don't think they get it, they're looking at whether there's been an incident during the day, only for ds, it's not the big things that he occasionally gets into trouble for, it's the little things, like being told off for talking when it was someone else, like his friend losing golden time and ds feeling that it's unfair, things that I can't possibly expect his teacher to notice every little thing.

A friend (parent of an autistic ds) has recommended omega 3 chewy sweets, which we have got and have started.
We avoid certain additives, as we know some things (possibly aspartame) sends him through the roof.
We were also told to try gluten free, but I'm finding the prices quite restrictive, we are on a very tight budget, but I'm trying to find alternatives, and pricing up bread flour so I can make bread for him. It might take a little while before he is fully gluten free to see if it makes a difference.
I've never heard of behaviour balance, so I'll go and google it now.

When I was on the phone to the lady from the special school, she suggested a trampoline, as ds constantly jumps on the furniture. We borrowed my mothers trampette to see if it helped. The first night was a nightmare as he went hyperactive and blew up, but since then it seems to be helping a bit and he hasn't jumped on the settee all day - first time in over 2 years!

Faverolles Tue 14-Jan-14 21:20:52

Dh and I are having to grow a thick skin over this.
Most people believe that being fine at school means that he can control it, so there isn't a problem and ds is just being naughty.

A lovely friend the other day asked what their qualifications were, and why they thought they could comment on something they know nothing about. I'll try to keep that in mind next time someone quizzes us grin

popgoestheweezel Tue 14-Jan-14 22:49:23

We had that too, he can suppress it to a certain extent but has to come out somehow and that's usually in the place he feels safest, home.

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