I can't cope any more [sad]

[PeachyClair]

I just don't know what to do. Sam has spent another full day in meltdown. he tried to break ds2's hand earlier, he tried to COOK ds3 yesterday (we haev the cooker isolayted though so not possible). he growls, bites, snarls all the time . He has taught ds3 to piss on me by clapping when it happned as an acidnet, he spits at me if I go near. Dh can't help, his intervention doesn't have its normal effect and he's at work anyway. we cannot go out without him biting someone, or runninga way and if we do we get insults thrown at us for not stopping him crawling, snarling or whatever. I even had to interrupt writing this post because DS2 was screaming as DS1 had broken into his room and was acting like an animal, pouncing and growling.

I know there are other awful things on here tonight and I'll probably get yelled for posting this but I am in tears, feel despearte and just don't know what to do.

He attacked 3 times whilst this was written

Beckhams are supposed to be very keen atm (not very well advertised or something) I know of people getting money from them for transport/hotels for appointments.

safespace

Oh Peachy, sounds like you are having a very rough time at the moment. Will Sam be back at school next week? Have you anyone near by who could help you with the children... relatives, friends etc, so that at least there were two adults around to try to prevent Sam attacking his brothers and yourself? If you want some help... however little it may be, call/e-mail me, I fancy a trip down the M4 tomorrow. Seriously, I'm not busy tomorrow (well today now as it's 1am), I won't charge (though mugs of coffee are always appreciated), so just ask. I think you are in South Wales, quite near my cousins.

Is this acting like an animal something relatively new, or been Sams thing to do for a while now?

Good luck, hope you manage to get some sleep tonight, ready for another day.

Peachy

I just wondered if you had considered any medication for your ds? I am not sure if that's the route you want to take but it can be a god send.
My own dd is on ritalin as she does have Adhd as well (and her violent outburts have stopped completely). My friend's son with AS takes riseradone which has calmed him down as it helps loads with the violent outbursts. I am not saying it is for everyone but I know that it has helped my family no end.

So sorry you are going through this Peachy Hugs xxxxxx

sorry to hear this peachy

dont know what to say really, ds seems to go through these bad times as well, jimjams idea sounds good maybe something the family fund could help with?

fusby - are you ipod? I only ask because the Beckhams funded a beach wheelchair locally. They do seem a good trust to apply to, very human- its run by Victoria's Mum I think.

If you are ipod I'm hoping you'll be doing my assessment (just referred to OT today )

peachy- safespace themselves have some advice about applying to charities- worth contacting them

Sorry Peachy, do you set support from any services at all?

Is he under paed could you call and tell them you need more support.

Hi all.

We don't get anything from SS, I have an assesment that says we're entitled tor espite but there seems to be a system here of you can get if you're one of the lucky
50% (or whatever) whose calls they return, we weren't. I am going to ask for a reassessment though, they put me off last time (deliberately) by saying if I needed more I'd have to put ds2 and ds3 on the at risk list for child protection 9at risk rom ds1) and go that way- Ds2 and DS3 ARE NOT at risk: when Sam goes, I shut him in a room with me. Sam might often try to 'get' them, he is not given the chance.

Nannynick- your offer was kind and brought me to tears. Thank you. Fortunately at about 1.45 I poured myself a stiff whisky, and took Sam into bed with me where at least he was calm if awake.

No there weren't any adults who could help- we moved away for me to go to Uni, something I love and keeps me sane but that I am beginning to have doubts about in that it needs time (i'll probably get a 2:1 but could get a first if it wasn't for the caring). Apart from how isolated I'd be, however, we'd need some ncome from somewhere so if it wasn't grant / loan then I'd have to get a job so we'd be no better off. I do miss being near family though, there's one friend here I can call who will take Sam out very occasionally but she's in India atm!

Sam has calmed down a lot, but is still simmering- so there's more to ocme though perobably nothing like last night. Thsi has happened in the past, but not at this magnitude for some time so I was caught off guard- he has grown a lot since then! It did affect me though: I'm OK whilst he's calm (he's like an Angel then), but the minute the noises / flapping start I getr eally shaky. hopefully that will pass however. fortunately Dh is home now for 3 nights, he is trying to get a day job.

Thankseveryone for the support. It amde me realise that we've got to push a lot harder for help. what if this happens in the playground? Or if I don't hear him kick off (one day this week I made the mistake of having a bath- won't do that again ).

Hi Peachy - that last line was very telling - fancy wanting to have a bath! Please try for help again - while respite is really important, the behaviour needs managing before Sam or someone else gets hurt. What if its you? SS will need to sort something out PDQ then wont they.

Hi Jimjams - sorry Im not ipod, think shes an OT, Im a physio. I do a lot of joint work with an OT, which might be why I sometimes sound like one! I am in the South-West, so beach chairs are pretty important for some of our families.

Peachy, so sorry to hear how tough its been. My DS also has "Challenging Behaviour" (capital C & B!) so I do know a bit about it too I think a Safespace is a great idea but would take some time to get. I have a friend who has just got one funded by various sources. I also think you should get some proper advice about rights to respite etc and I think the NAS Helpline would be worth a call. They do take a few days to get back to you but they are excellent. I would also recommend medication. Melatonin is not medication and, imo, is just not enough in your situation. My DS takes Risperidone like BH's friend's child. It has been a godsend. It doesn't eliminate all the behaviours but they are much less and don't last so long. There are other meds. A good friend of mine who has a DS who is very HF (no learning disability etc) found that Risperidone caused tics in him but he has just gone on something else (I spoke to her last night) and she says he has calmed down totally over the 3 weeks since he started and he is happy to take it. I agree with Jimjams that seeing professionals if you can, whoever they are, can be helpful to have things on record, be in the system etc for the future even if they aren't that helpful now. What happens at school? I'm sorry, I should probably know your story but brain is melted after Xmas! You badly need support and if Soc Svs won't give it to you I think you need to go elsewhere/anywhere that you will be listened to and they may then get a kick up the bum. If they agreed that you should get respite then they MUST give you that in Direct Payments if they can't provide someone and you request it. You could use that to have someone look after the other two if your DS is too difficult for a stranger. Its not the answer in the long run but it might help. xxx

Peachy glad things improved (even if not wonderful)

SS sound awful , I know most don't have a good reputation but still

How long do you have left at University? Will you move away when you are finished? If you are planning on staying for a few years def try for the SAFESPACE , bypass SS and try one of the charities.

I've 18 months left to go at Uni, whether we're here depends on 2 things really- if Dh gets a local job we'd stay, his cururent job is workable from there home (somerset) and here. If nothing happens either way we'd probably stay until the landlords sold the house on, which might happen now or never- who knows? We take it a year (our contract length) at a time.

Davros, school says Sam is A1. However, I get randomly approached by small kids asking me to help stop Sam hurting them on a fairly regular basis. And ona few occasions I have been passing (I live 3 minutes walk away) or there to help, and have seen Sam hurting or scaring someone, on which occasions i drag him to the SENCO and leave him with her (she's also his tutor atm). he goes up to Juniors in September though. He's just been agreed for statement assessment by the LEA. School will not be impressed.

I'm so glad the LEA has agreed to Statement, hopefully it will be the start of some proper support and help. Good luck.

Oh hun i really do know how you feel. I remember going for 2 whole weeks without a bath because i couldn't leave Ds alone and he wasn't sleeping for more than 2-4 hours in every 24...and not all at once either.

It does get to the point where you just feel like quitting, I once called my exp at midnight and begged him to come over as i just couldn't cope anymore. (if you know my current situation you will understand just how desperate i must have been)
When he arrived i was sat on the doorstep in tears and DS was in teh frotn room smearing poo all over the walls and puling the covers off the sofa cushions.

I have asked on lord knows how many occasiosn for SS assistance and on every occasion i am told "your coping fine, you dont need us"

WTF! im a single mum with a 2 yera old to deal with as well, trust me surving and coping are two different things.

But like Sam he will go through phases of being realy out of control and then things seem to calm down for a while. when he is calm he is the funniets most beautifull boy and everything seems worth it....but when he goes i just wonder what on earth i am doing.

I have just been reffered to the NCH family centre and they in turn are placing me on a Webber Straturn course. (that may be wrong but its something like that) they teach management strategies for children with challenging behaviour. I am hoping they can give me some magical tips.

If you have been assesed as deserving of respite then i think you ned to push until you get it. The idea of respite alwasy sounds fab but i know i would never accept it as i just dont trust anyone with DS. he is so volatile i just never fully relax that they know how to be with him.

Its good that he has calmed downa bit though and who cares what grade your degree is? just getting a degree with all the other difficulties you deal with daily is an atonishing achievment and never allow yourself to think otherwise.

peachyclair I can't imagime what its like trying to deal with your life, but it amazes me what a postcode lottery it is with the help we all get.My son has HFA but doesn't have any behaviour problems to speak of, yet social services phoned the other day to ask if we needed help,could they arrange another visit to us, would we be interested in using there buddy scheme etc ect.you (&s several others) have more than one child and at times desperatly need help and you don't get anything even if you plead.I don't have any problems at home, my son isn't at risk, I'm not depressed,neither is dh ,we are nothing special.I hope this has come across ok, I tend to put my foot in it occasionally but I really do feel for you

Peachy- re the respite- SS assessed ds1 and said I was eligible for respite so I requested dps. Initially they said no they wouldn't provide them, and said ds1 would have to go to a wholly unsuitable playscheme (wouldn't have been safe for him, unlocked doors, no 1:1, stream outside ) So I showed them the direct payments book where it says they have to provide them, so they did. They did say a pile of ridiculous things though, like they couldn't be ex[ected to provide violin lessons (WTF??? DS1 with the violin PMSL) A lot of SS depts aren't very up to date with direct payments rules. I think every LA has to have an independent organisation working alongside SS to help out with direct payments. They were really helpful to me, they understood the system, and visited with SS to help argue my case. They now do my returns. Here its run by the Leonard Cheshire foundation, but might be worth trying to find out if you have something similar locally. Having an extra pair of hands does help enormously.

Getting school in place might help, in fact getting as many people on board as possible might help your case. When I was applying for respite initially ds1 was at mainstream and they agreed to provide help but very half heartedly. Half way through the process he switched to his current school (which is kind of for the "most" learning disabled locally, children who go there are seen as being bad iykiwm) and suddenly they were much keener to help. I know Sam is in mainstream, but you may find that they become more interested once he has stuff to go with him- like statements etc. It does take a very long time to go through (took a year) but worth continuing wiith, especially if you can find out who is doing the independent bit locally- they can do a lot of the work foor you then.

Well a small development- had a letter (oh timing!) from the SS today requiring me to check sam's details, they have him as undiagnosed awaitinga ssessment! WTF? Anyway, haev sent abck corrected in red marker, wth a note requesting immediate reassessment (it goes to the team head). They also details his needs as 'mild vilence, some sleep issues, no sense of danger', so I have amended mild to severe; added speech and language issues (and added SPD to the DX box) and sensory problems. They also listed me as a single aprent with no father around, despite Dh being there at the assessment!!!!

Ia lso e-mailed the chap who helped us at the Parent partnership palce- thought he oculd help with all the Statementing stuff.

We're going to chase the holidays respite every step of the way- I refused him going for overnight respite, I wouldn't like that at all. But a friend of mine, her son (who gets on OK with Sam) is ASd and goes to the holiday scheme, as does the son of my CM (AS). They do mountain biking etc, the sort of thing Sam would not only enjoy but excel at.

Sounds like the usual SS complete incompetence!

I used to work at the local respite centre and the younger chldren whose parents didn't want them to go overnight would just have day care at weekends/school hols , ask at the centre its self if thats a possibility as that would give you chance to take the others out for odd days or to the places you can't with Sam

Hi PeachyClair,
It sound as though you are coping really well with a very stressful situation!

Just to let you know that my DD has just started having overnight respite. Although I was nervous, worried etc at first, She loves it so much that I feel alot better about her going.

There are lots of children there with very challenging behaviour and the staff are very well trained and deal with situations calmly.

Although this is not the way I envisaged my family life, it is what I have to do for my sanity and the benefit of my DS.

A calm desends over the house and for the time she is away I can relax (and have a bath).

Keep going, Sam has a lovely Mummy!!!

Thank you BTsMum- that made me cry (stupid me). Dh tells me that a lot, but I do rank myself as a shite mum really .

Sam is much calmer today, we a bit of him being a Vulture last night and ahd tor emove ds2 from his bed for his safety 9which was actually lovely- ds2 is just the best company I can imagine) but this am dh took ds2 to carnival with him, so Sam got abreak- tbh its ds2 that seems to wind Sam, accidentally of course. Sam would be on his own or with me if he could, never see anyone else.

Actually sam is laughing hysterically behind me as he watching the mightty boosh with DH! And I ahve a 'date' with ds2 tomorrow after school to go buy him some new clothes, hopefully separating them down a lot will help until SS get their act together.

Hi Peachy,

Reading your first post was heart-rending for me, as my DS2 sounds exactly like your DS and I was in the same state as you 3 weeks ago. I asked our local SS for help and heard just before Xmas, that they have spoken to a 'family therapist' that we see at DCAP and have been told that my Ds's problems are down to my 'poor parenting skills.' The fact that DS has a dx of AS,OCD and 'severe behavioural problems' has, apparently, got nothing to do with it! DS has just been prescribed with Risperidone by the psychiatrist and we are only to use it at the first sign of a meltdown (it works quickly!) meaning that he is not taking it all of the time.

Just wanted you to know that I feel for you!

Good luck and take care.

Oh scooby I was hoping it was just us that got the poor aprenting crap heart rending isn't it? yet if you speak to the NAS you will realise how very common these meltdownds are. The fact I have 2 perfectly behaved (albeit ds3 too passive) children is by the by, apparently

to you Scoobs

Thanks Peachy!

I have decided to visit the 'therapist' 1 last time, to tell her exactly what I think of her...and will politely decline the offer of 'family therapy' from SS (as that seems the best they can offer!!) Will then just continue to try and cope with DS2 the best we can - like we have for the last 10 years! Only asked for help in the first place, as the whole family was struggling (including DS2!) but now I have been branded a 'neurotic/ cr*p parent' I have totally lost faith in all of the so-called 'support' agencies!

Hugs right back at ya Peachy!!