AAAAAHHHHHHHHHHHHHH i need to scream!!

[jennybensmummy]

please tell me that my son is not the worst kid out there as he feels like it and i just cant cope anymore!! He is 3.6 and has a diagnosis of autism (dx was a year ago so i should be used to it by now!). He is generally a little horror, i know its not his fault and he doesnt deliberately wind me up i just find it so hard and we get no help with his behaviours, we have portage, speech therapy, health visitor and an educational psychologist - she has seen him 3 times i think! Next month we have a 4-6 week ot sessions for his sensory needs. Ben is very violent and i am covered in bruises, he headbuts any hard surface around 30-40 times a day and we have holes in the walls from this. He just cant be good he really cant even the simplist of things are difficult with him, i try to hang the washing out and he pulls them all off as fast as i go, i try to clean the house and he makes as much mess as i tidy by flooding the kitchen, tipping random things out (not toys just anything he has no use for), he throws things everywhere all day every day. He used to play with toys if i play with him one to one, i have to be one to one with him all day for any kind of half way normality but the minute i stop or he gets fed up (very easily) this rampage starts again. He doesnt play anymore with anything, his entire being is to wreck the house i spend all day picking up things after him, cleaning up spilt things (he can open all cupboards in kitchen after breaking off all the locks), being beaten up by him, or seeing him throw himself off the walls. I have referred us to the disability team of social services last october begging in tears for some help, they never got back to me but sent someone to a multiagency meeting we had in december, then in february a social worker came and filled out a form for mencap asking for respite for us but we have still heard nothing, for the last month i have left message after message for the social worker and none have been returned. we have been referred to cahms but heard nothing, i dont know what more i can do i feel like he is slowly destroying me as i just feel like my life consists of cleaning up and beaing beaten by him with no proper help to stop this. he is getting bigger and stronger and were just stuck with him like this when one day he will probably kill me if it carries on (i know its unlikely but thats how i feel!!). I cant take him places as he beats kids up wherever we go or headbangs and i just get stares or comments that im a bad mum. My partner is not very supportive really (hes not actually bens dad and although he says not i think that maybe an issue as to why he doesnt help much - i think otherwise its just lazyness!!, he does get stressed though about ben but moans at me if ben puts holes in the walls like he does so often and says that i shouldnt let him - i dont let him he just does it i try my best. I cant get dressed, have a shower or go to the toilet on my own except when ben is in bed. His sleep is terrible despite melatonin, he goes to bed well now his dose has been increased but wakes a lot in the night and then never gets up after 4am so its me and ben all the time. He goes to a preschool 2 afternoons a week (rising to 3 soon if he copes ok with that) but i spend that time having to get the shopping and clean the house. Im shattered and at my wits end i know noone can tell me what to do or that im doing a great job because im not what kind of mother puts up with a 3 year old ruling the house and beating her up I just feel like i cant breathe without him and i need my space or at least to feel like i achieve something in the day other than feeling so proud of myself that i finally got all the washing hung out despite bens efforts to stop it. We have new neighbours one side who probably think i am neurotic already and the other side dont talk to us that much for numerous reasons - no massive arguement or anything though just petty things! i see them looking and know they tut and think im doing it all wrong with ben but they dont have an autistic child i am doing my best, but what do i do when my bvest just isnt good enough?! i knwo i have waffled and ill be suprised if anyone gets this far but i just want to scream but cant as that will set ben off on a headbutting session - were doing ok at the moment he is only drawing on the lino floor in the kitchen (thats kind of ok for us as could be much worse, though could be better!! he could sit down and watch tv but that never happens!)
thanks for reading to my moan and if anyone has any behavioural ideas to help me please let me know or anyone want a child who beats you up and wrecks your house feel free he is here and comes with a major buggy, sensory stuff for his room, special needs car harness (that still he gets out of!), and loads of toys hardly played with!!!

Hi JBS,
I'm afraid I really don't have the experience of autism to be able to give you advice (DS1 ASD but mild HFA/Aspergers), but there a lots of other who will soon I'm sure....

What behavioural advice have you received from OT/Paed? Anything? Are you in touch with any other help/support groups in your area??

Was talking on another thread to another MNer and we agreed that it is a very fine line between bahaviour that is due to our DCs SN (head banging for instance), and behaviour that an NT child your DSs age would be trying to get away with.

And yes you're are doing a bloody brilliant job just getting out of bed every day.

Sorry I can't help and hope someone will pass on their advice/experience soon

BR

jenny , ive had days like yours.its true you cant understand what life is like with a sn child until you have one.its the 24-7 picking up after and trying to have "damage control" that gets to me the most.im guessing like myself you dont have any statues or knick-knacks in your home. DD4 and ds3 have broken them all here, so i have nothing much thats homely.the up side of that is very little dusting!.wish i lived near you , id take your lo out with dd4 to give you an hour off, they could headbang together!( well beside each other ).PILS took my terrible two the other weekend for a few hours, i was amazed at what i got done...house was spotless in a couple of hours. im looking for a childminder who has experiance of autism spectrum/adhd ,so i can just have an afternoon off now and again.I have been giving dd4 a lot of baths recently , its the only place she sits still in.i take a cup of tea in with me whilst i watch her, sometimes i even manage to drink it when its still hot! .waiting on cahms too, but its taking forever.cant wait until melatonin time so i can get peace!....would it be wrong to give her some for an afteroon nap?

Oh am sending you huge waves of something, anything supportive. I wish I could come over right now and send you off to a pub garden for the rest of the day. My field is adults with learning disabilities so not sure I have anything practical to offer. I am appalled by the support you are receiving - whereabouts in the country are you? If I was at work I would get you some breakaway training asap to cope with the violent behaviour - am assuming there must be something similar for children?
Please, please dont think you are a bad mother - you are not, you are dealing with a bad situation (and by that I dont mean a bad son!) with precious little support.
Is there anyway you can get your shopping delivered? ( I find that the £4 I spend on delivery is worth the £20 extra i'd spend from browsing in store) so at least you can have a couple of hours to yourself. And I am sure its probably the last thing you want / need but it sounds like mencap / social services need stalking.
Hope I havnt sounded patronising, really just feel for you. Am sitting here with my 7 month old who has DS and know that the chances are I will be somewhere similar to where you are right now before too long.

I'd get me a solicitor who's prepared to write a letter to social services outlining their absolute failure to address the needs of your son and family by providing respite. There's been a big test case in the courts recently on this, so they now should know that they are breaking the disability discrimnination act by failing to act in a reasonable way.

Best £50 you'll ever spend, if the budget will stretch to it. Failing which, have you tried the local MP?

No way on this earth should you have to wait for month after month with his behaviours causing him and you injury and the house wrecked. Absolutely disgraceful that they are not responding.

Is there anything the local autism charity can do to advise or assist or put you in touch with an advocate? Someone who can help you fight, and speak with you on these issues...?

Meantime, very large cuppa for you, I think. Rant away. Had 3 and a half years of rage from mine. Not fun.

Do social services know you are getting bruised. I wrote to them and told them when I was (because they had failed to provide services so we couldn't get out the house so I ended up covered in bruises). It does seem to have helped access to services.

I am getting lumps out of my walls again so I have started talking to SS about a disabled facilities grant (DFG) - which I am not particularly keen to do because we did it before to make our windows safe for ds1 and it was an utter nightmare. However I have shown then the holes in walls and asked whether there can be some way of making his room safe so I can put him in there when he kicks off.

It did take me a long time to get SS on board (DS1 is nearly 10 now, they didn't really help out until he was 5 - nearly 6), so you do have to badger them. You can request a care assessment for your son (and for you as a carer) and they have to do one.

Do you have a clinical psychologist who can help with behavioural strategies?

thanks everyone, nice to feel like im not alone, im trying to just smile and pretend its all ok but in reality its been like this so long and no sign of an end. The social worker just phoned me back, she said she had no update, think she only rung as i kept calling harrassing her with messages every few days and asking for her to call me back with whats happening!
fizzyanddizzy - im in nottinghamshire, i dont know what else there is other than cahms or respite help but noone ever tells me and i fight and fight and get nowhere, sick of asking people who can help me as they all just pass the buck! and my not very helpful other half tries to get me to get him to do the shopping - he is hoppeless and just buys things for himself!!
drlove8 - definately damage control here too!! my other half wants to have ornaments and stuff though so i spend all my day trying to save them too, its like he doesnt accpet that due to the way ben is things have to change - like he wants to go out places that ben doesnt cope with and moans when ben headbangs in public. generally ben annoys him so easily!! were getting married next year?! he is lovely just not that good with ben really, not bad with him just not good with him iykwim. so really the whole clutter everywhere makes my life harder!! melatonin during the day for a nap - how tempting!!

we dont have a clinical psychologist, noone has ever mentioned one to me! maybe i will write to the social worker that might help, cant do any harm can it?! everyone who deals with us - or i try to make deal with us stalk knows what he does to me and how he headbangs etc, even showed them all at the multiagency meeting in december the holes in walls but they still have done nothing!! not sure about the grant through social services as we private rent so not sure what they could/would be able to do? any ideas?

in the time i have typed that ben has thrown the pegs everywhere and managed to unlock my back door, gone outside in just wellies - no nappy or anything!! how the new neighbours must love us already!!

Jenny the things i do have ,like books, dvds and cds are all on high shelf units where dd4 cant reach.it really does make life a bit easier if your not trying to save stuff from being crushed/thrown/smashed mid meltdown!

Jenny - not sure what other advice i can give but just wanted to let you know i am listening too You are absolutely NOT a bad mother.

As you know i am in Notts too - i think we are a little bit behind you in the process (dd 3 next week, autism dx in Feb) so i'm not sure what services we have here either. Is he in nursery? Do you have any family members that could give you an hour or two's break now and then? Is there anything he loves - water, etc that you could stick him in front of to have ten mins off?

Sorry i can't really help but

we self reffered to "Crossroads (caring for carers") for respite when mine were that age. I heard about them through another SEN mum. There are 2 branches in Nottinghamshire acccording to google. They came in for 2 hours a week to give me time out from my 2 ASD DSs and to allow me to spend time with my NT DS. Might be worth giving them a ring. Sod the neighbours. When we moved house I knocked on the doors to introduce myself and my non-compilant children (to warn them before we got any complaints) and asked them for any help or information about local services that might help us. Turned out they were all very churchy in my cul de sac (not that we are at all) but we became a bit of a project for them and although the unintended preaching bit got on my nerves somewhat, I was grateful that they were bothering when social services didn't.

dd4 is in meltdown /temper tantrum as shes unwell with a bout of diare diaro the squits and i wont let her play with her poo.

Jenny, really feel for you. That constant barrage is so wearing, it kind of breaks the spirit a little bit, at times. What about TEACHH - visual cues for everything, what's happening when, etc. A little quality time for yourself perhaps - sounds like you could do with a bit of a break!

DFG can be for anyone wherever you live (although will depend on landlord- (s)he would have to agree I guess to any changes).

Do ask for a clinical psych - paediatrician might be able to refer.

Hello Jenny, cant really give you any advice about the appalling response from ss and all the other agencies that are letting you down so badly, but would just like to let you know that your son will change and improve as he gets older. Your ds sounds quite similar to my dd at that age and i can tell you now that age 5.5 she is totally different, since starting school last september she has matured socially and has become very calm and focused, its hard to believe she's the same child as she was when she was 3 and 4, you are probably going through the worst of it at the moment and it is hard to see any light at the end of the tunnel but it will get better just hang in there.

Hi Jenny - I have an DS8 who is ASD. Only sending hugs and one suggestion - Phone SS and ask for the Sitting Service. It is self referal so you don't have to wait for somebody else to do their jobs. I think it is available in most major areas. It is, in my area, a bare minimum of 8 hours sitting per month done in your home and covers siblings too. Give yourself a break or use the time out to find & use other resourses.

Lots of hugs to you - we're now a few years on from your situation and it does get better but you need the help now and waiting for them to come up with something will take til eternity.