fed up of feeling alone ...............

[dooday24]

things have got really bad .... and am really fed up and emotional ,, we still get no help or suport with Reece x i love him so much ,, but whys it so hard at times

his behaviour has got worse , he pinned me to the ground the other week and was biting me , ripping my hair our and pintching ect ect lasted for about 2 and ahalf hrs then he trashed the house ,,, i rang social services ,, who then took 4 hrs for a duty social worker to phone and then to b told there is nuthing they can do

and everyone i av gone too for help or suport ,,, they all say well yr under camhs ,,, so we r not aloowed to help u grrr,,

Reece refuses to see the woman from camhs as he took a dislike to her the one time he did see her (

but bcause he has just started on meds he has to stay with camhs

i really dont know wat to do anymore ,,, feel on the verge of a nervous break down

Reece has also just started at secondry school which is not goin too well either

thanku all for listening

Donna x

[trekster]

hello

 

Really hope this forum can help you feel less alone. It sounds like your family are all having a hell of a time.

What meds is he on and has he got worse since starting them? Benzoate in risperidone caused that reaction

for me I am a monster on benzoates in liquid risperidone and im careful about them in other food and drinks stuffs.

 

Is he able to communicate his needs to you? Would having cards with basic needs help eg one saying 'i need to eat',

another one saying 'im tired' ? stickmancommunications does some great cards which ive found useful and im quite

verbal. i used to get angry at people stopping me from going to the loo. Now ive got a card i can say 'back in a bit'

and show the card if people are unsure where i am going.

 

http://www.autismoxford.org.uk/ ......or a NAS parents group in oxfordshire might have some ideas.

 

Has anything major changed recently? Moved home, school etc?

 

Failing that write to your MP or safeguarding department for Social Services, tell them how bad it is with your

sons behaviour and that your family desperately needs help. I'm guessing you have already tried Social Services

also read up on the NAS 'you need to know campaign' which illustrates the difficulties autistic CAHMS patients

have in accessing services.http://www.autism.org.uk/youneedtoknow

 

HTH

[dooday24]

hi thanku so much for the advice x really apreciate it x i have been a member on here since 2006 , but havnt been arwnd for a while .

Reece does communicate bless him , he just dosnt cope with changes in routines at all and dosnt make freinds very easily x

hes always had a lot of behavioural problems , but hes getting alot bigger and stronger now and i physically cannot hold him anymore to stop him hurting me

i av been in touch with autism ox there was nuthink they cud do to help ....

and social services say we r not needy enuuf ...watever that is suposed to mean i do not know

he has just gone up to secondry school which he is finding very hard to deal with

he has just started on a very low dose of prozac 2 and a half weeks

we just go rwnd and rwnd in circles as if u ring any of the agencys that mayb able to help as soon as u mention u r involved with camhs they say they cannot help

camhs have been totally useless and we av had toput complaints in to them an Reece refuses to see the lady hes under as hes taken a dislike to her on the one occassion he met her!!!

she was suposed to do six sessions with him over the summer hols about anger and how to manage it he refused to go the 1st week so never heard from her again

i really dont know wat to do anymore

[trekster]

YVW

 

'Every disabled child matters' is one campaign and also the CDC campaign is trying to raise awareness.

Does he have a statement? If not ask to speak to the Special Needs Co ordinator at your local school.

 

http://www.mencap.or...ional-needs-sen

 

Can something written on those cards help him to say that he is distressed? i mean at school for example.

if you can google 'Fair Access to Care Standards'.

 

The below links might also be useful for you, really hope you can help your son....

http://www.autism.or...ers-rights.aspx

 

http://www.autism.or...and-carers.aspx

 

http://www.autism.or...sults/pg=1.aspx

 

There are some clubs in Oxfordshire for Learning disabled folk a search on the MENCAP site helped.

 

http://www.mencap.or...lue_many_to_one[]=Y&x=19&y=18

Edited October 26, 2012 by trekster

[A-S warrior]

Im not going to patronise you and say "hugs" but i am going to say my doors are open if you just wana have a laugh, and a chill out.

[smileyK]

i used to have violent aggressive meltdowns/outbursts which lasted hours upon hours of crying screaming uncontrollable fits of rage /anger against mainly my mum but also my dad and deafblind twin brother everyone became scared of what id become or how to approach me as never knew when one would flare up occur suddenly out the blue i was unpredictable and strong when in one so like your son for my safety but mainly for others gad to be physically restrained on the floor so couldnt move! Id get so tired worn out over this situation id sleep for hours after i felt so bad guilty wrong but couldnt stop myself like i was two people not one it was like i was someone else i was put on risperdone risperdal by camhs but i felt had no real effect to my anger issues calming them down at all! I was so confused about who and what was happening to me around me i became scared of myself wasnt good safe secure place to be! Im so ashamed of pain misery heartache ive caused through this! And hurt so pain people in my path of self destruction of trying work out who i am and where i fit in belong in this world! I not excusin it was horrible be in for everyone my outragious yet stupid behaviour which it was i was lost felt so alone trapped like no one could help or save me ill never be able to truly forgive myself or be at true inner peace over what i did which i could but cant tried and failed! It comes hit me in face every so often trip me up & over when not looking comes back to haunt me when dont want it too! alll i feel is true utter disgust regret at my actions which i cant take back! am appauled! And can not sweep under carpet or brush to one side neither would i want too! :c i used feel so frustrated inside! Ive held knife to my mums throat tried to kill her had police and ambalance called once got so bad! Struggled so bad make true sense understanding of mayhem and choas i caused! Reaso ive smashed up property not thought anything of it at the time totally irrational edging on pyschotic behaviour im not proud of any of my behav something ive have to know & live with memories for rest of my life! iourns behind!

[smileyK]

i nearly sent my mum in nervous breakdown mental state as she was coping with my terminal nan being her main carer running her home and ours chores wise everything and day of her aunts funeral i kicked off big time not easy to cope with manage guilt consumes me the worse knowing this everyday! Feel such bad daughter like dont deserve loving i was trying push everyone away especially my family i didnt want them put up with me cope or manage as felt like burden feel too much for them more i pushed was pushing my mum closer to her edge lucky she strong but she suffers with deprssion too so put amounts of unwanted pressure on her i felt unlovable felt so empty wanted people to hate me as much as i hated myself and my life was ready give up on myself luckily my family didnt im now alot different more calmer chilled out relaxedi have my moments of madness craziness flare up every now and again but not a weekly daily or monthly occurance like before im glad my family stuck by me couldnt do it without them! And thisre

[smileyK]

*these situations made us stronger didnt seem like it at the actual time i nearly torn my family unit to shreds pieces! No one should have put up with what i did! For that im enternally grateful yet very sorry! I can speak from first hand i also had mental health issues of deprssion which they say is often displayed often as anger on outside! Again not excusing i was making everyone tired & drained mentally /emotionally reached breaking point of personal experience is light at end of tunnel eventually may not seem like it now but keep at it however hard it will pay off in the end! I can truly empathise how difficult things must g of no return and wouldnt of blamed them if they did decide wash their hands of me turn their backs as what i deserved! I caused this simply! Just wanted way out anyway this meant! I was hurting so much inside! Couldnt verbalise well enough to tell anyone was so messed up still am to some kind of extent and way even my mum agrees i still have many demons skeletons in my closet and issues that needs work at addressing but too scared to face what feels like lonely scary place uild up to! Hope in my own way and time i can someday beat my demons but for now always something arising that needs managing better! Suppose that normal yet complicated difficult autistic life too! Try so hard to fit norms strain can become overhwelming and start becoming physical anger as dont know how face it head on deal with it i still dont to some extent but improving suppose all that truly Counts at the end of the day! Im bot perfext everyone makes huge great monster massive mistakes but those are challenges of life autism or not in your life always something it isnt easy nice to live but truth of reality which can be even harder to face as a family unit and stay together remain in one whole piece and continue to be yourself! Dont forget who you are in this and that you still matter in this too! Dont be so hard on yourslef!

[smileyK]

my mum used to say exactly same thing as what you said as that when in this anger rage moment hard to physically control/manage properly enough to restrain as get bigger and stronger too with it and because of our age! Puberty changes didnt help with me seem to mess me up even worse more with hormones mixing things up confusing matters playing with strong i seem to struggle like your son getting my head around huge changes jumps in secondary school all is quick sudden and put upon you fast! But you just feel anxious non stopl in what expected of you in all areas and ways! Difficult to adapt not freak completely and why it happening as feel it only you who feels this intense emotions! I dont envy any parent/s trying to deal and manage these situations alone! Ive been on prozac too with again no trye real effect on me

[smileyK]

sorry if jumbled up and not making full sense as typing from mobile and early hours of the mornin! My two excuses here anyways! And sticking to it! Lol i didnt have late official diagnosis til early teens with also didnt help matter the situation in trying to accept deal and get head around what everything means! Where you go from here just a word really nothing more nothing less at the time being told then turns world upside down if want it too or not feels have no real choice but too! via local camhs services after being told official diagnosis just handed leaflets so my thoughts opnion of camhs service are same as yours it deffo postcode lucky dip with recieving successful treatment and service they didnt meet my needs left them outstanding lot of time didnt have appointments with them for months at a time just put me on different meds mainly our sessions didnt last that long dye to high client list demand! e ets on i felt needed more of regular input and put in endless thepary sessions which i felt i did have say over or a voice and didnt suit my needs at that point in time!so i understand your sinsuism really i do!

[Mike_GX101]

Loneliness sucks but so can being stuck with the wrong person...

[karmadestiny]

Dooday, I feel for you, please don't give up...from what smileyk has written it is a conformation for you that your son is very intelligent but just has issues he cannot deal with or understand...they cannot see the severity of their actions...there has to be someone out there who can help...I'm suprised if his under Cahms and not wanting to see the lady who been assigned to him that they would make it a priority to find someone who he will be relaxed around, as his behaviour towards you is not helping you in being there for him...my son can also become quite aggressive and at 11 he is 7ft, 8 and towers over me...he can pin me down very easily but luckily I keep talking to him about respect in simple terms he can understand and how to behave around me...I know he love me very much but when he gets angry he just sees red and can't control his outburts...When he was around 5/6 we got him boxing gloves and a punch bag to take his frusterations on safely...or use cushions to punch out his anger...look at his diet if you can try and see if removing the E'' numbers, foods colours etc calm him down... its not easy but look for anything that he can focus his attention on and find confidence through this. What is his main interest?...my son has calmed down alot since he became interested in Football...he has made many friends through this interest...my son has also started year 7 this year and I can imagine the concerns you have...having an interest that he can talk to other children about will give him the edge he needs...please look after yourself too...for your strength is what will carry him through too...being a mum, especially to a child with needs can deplete your energy reserves to max, keep working with love, it is the only form of strength that will empower you to make things happen for both of you:)!...x

[karmadestiny]

sorry if jumbled up and not making full sense as typing from mobile and early hours of the mornin! My two excuses here anyways! And sticking to it! Lol i didnt have late official diagnosis til early teens with also didnt help matter the situation in trying to accept deal and get head around what everything means! Where you go from here just a word really nothing more nothing less at the time being told then turns world upside down if want it too or not feels have no real choice but too! via local camhs services after being told official diagnosis just handed leaflets so my thoughts opnion of camhs service are same as yours it deffo postcode lucky dip with recieving successful treatment and service they didnt meet my needs left them outstanding lot of time didnt have appointments with them for months at a time just put me on different meds mainly our sessions didnt last that long dye to high client list demand! e ets on i felt needed more of regular input and put in endless thepary sessions which i felt i did have say over or a voice and didnt suit my needs at that point in time!so i understand your sinsuism really i do!

 

Smileyk, you are a very beautiful and intelligent young lady:)...It is so good to know that deep inside what we parents sometimes feel is a child that cannot be connected to is someone who sees everything but just can't help or find a way to express their feelings in a safe way...It gives me the hope and has empowered me to find different ways of making the connections between me and my son deeper...You are trully an inspiration...x