no help out there

[hev]

steve was meant to have tuition 3 times a week 2 hours a day,i woke him up yesterday which was a struggle,ten minutes after his tutor was due i got a phone call from him to say he is not well so no tuition at all this week till next week

 

respite worker was meant to have steven last week for 3 hours last week,just before shes due i got a call to say shes not well

 

then hes meant to be going out with a worker but apparently stevens too loud when the worker takes him fishing thats 3 different organisations who are meant to help but they are all cr**

 

social services are useless,just left me high and dry,mum phoned social worker 3 wks ago to say things were bad again,i havent heard nothing from them i know i should keep phoning them but i feel theres no point

 

i feel like stopping all involvement with the lot of them,they cause me more stress as i get very angry and bitter with them which dont help the situation

[Paula]

<'> <'> <'> <'> <'> <'>

 

Hev its sounds realy realy stressfull and youve enough to cope with.

 

You know the best thing i ever did both for my own sanity and my sons was to stop the involvment of so called professionals who could "help[" i did this years ago.No more speach therepists,no more peadiatricians or physcobable people ,no more assesments with drs sat around i just told them all to begger of.because when you get down to it youre on youre own dealing with this and ultimatley its us mums that have to make the day to day decisions on how to handle all the behaviours they throw at us...others invovlemnt i thought just confused me and made me question my own parenting skills and doubt myself..............

 

Yes my son attends a special school but thats as far as it goes and its the best thing i ever did .

[Karen A]

Hev <'> <'> Sorry you and Steve have been let down.It is very stressful when people do not do what they have comitted to.

But please give yourself a bit of space before you decide what to do rather than cutting them off out of frustration. <'> Karen.

[mossgrove]

Paula

 

Your son attends special school who will have access to specialists if they are needed and will be guided by specialists in how they teach your son. It would be a much bigger step for Hev to cut herself off from any chance of specialist help as her son is not currently in school.

 

There are some good specialists out there, and they are worth there weight in gold when you find one, so I wouldn't recommend anyone cuts themselves off from all specialists, even if the ones thay have currently are not good enough.

 

 

Simon

 

 

 

 

<'> <'> <'> <'> <'> <'>

 

Hev its sounds realy realy stressfull and youve enough to cope with.

 

You know the best thing i ever did both for my own sanity and my sons was to stop the involvment of so called professionals who could "help[" i did this years ago.No more speach therepists,no more peadiatricians or physcobable people ,no more assesments with drs sat around i just told them all to begger of.because when you get down to it youre on youre own dealing with this and ultimatley its us mums that have to make the day to day decisions on how to handle all the behaviours they throw at us...others invovlemnt i thought just confused me and made me question my own parenting skills and doubt myself..............

 

Yes my son attends a special school but thats as far as it goes and its the best thing i ever did .

[Guest Lya of the Nox]

oh hunny

<'>

i am sorry you are having it soo ruff

x

[Paula]

Yes Mossgrove my son has got specialist teachers and im lucky but the only time he ever saw a speech therepist i chucked her out because sh said the reason he had language and communication problems was because i spoke with a broad yorkshire accent....there for do french children have issues because they dont understand french...............

 

The peadiatrician was a waste of space.oh he made all the right noises he sypathised and hummed and ared over things but he did nothing what could he do how could he help could he take my son away and make him normal.....he couldnt so after 4 years of back and forth going over the same old same old i said forget it you cant help theres nothing you can do and i didnt want my son to feal i wanted him fixed or that he was being paraded around...........

 

Over the years i have been offered other help.physcologists,chalm,releif support more speech therepy...........ive refused it all because as i see it they arent there when it all kicks of when youre in the supermarket or in the middle of the night when he decides hes gonna ###### the bed.i am they dont want to know.

 

All specialists do and i know its just my opinion is make you feal its all youre fault that youre a bad mother,or that youre going mad because hey theres nothing wrong with youre son daughter its all in youre head neurotic mum screw loose....oh ive all that too over the years..........stress level was through the roof.

 

 

Now we get on with it,and yes sometimes i feal like........ screaming or worse but on the whole i stand by what i say to Hev.

 

Ive read her posting over the years and she has nothing but aggro and greif so why bother with it.....in my opinion shed be best going it alone home educationing Steve her self without opthers input it would be a much calmer stabler enviroment without so and so saying do this,someone else saying thats wrong another saying its all in youre head.we know what there like.

 

Good specialists might be out there to find ..................but to be honest who can be bothered looking for maybe years to find one wasteing time and energy and getting upset and watching in some cases youre family fall apart through it all...............

 

 

My sons peaditrician was a good man a nice bloke but totally useless in helping with my sons condition.

[soraya]

Oh Hev, you poor thing, these people let you down left right and centre, l wouldnt cut yourself off from all help though as Steve is so like Nick and l know how hard it is dealing with them 24/7 especially when they are violent. Its all very well for Paula to say home educate Steve but as you and l know as they get to teenage years they get bored and fed up, they need to be with their peers, and try to learn social skills they are lacking. Nick is out of school at the moment and it is a b----- nightmare, he wont do as he is told and quite frankly l dont want to be his teacher. Keep strong and dont let it all get you down, l know it is easy to say and when people say it to me l could hit them!!!, but it is very true. When does Steve start his new school? <'> <'> <'>

[Clare63]

Hev,

<'> <'> <'>

Thinking of you and wishing I had some words of wisdom, hang in there Hun.

Clare x x x

[hev]

absolutely no way i can home educate,i tried it for about a week and i nearly had a nervous breakdown PLUS i only have about 15percent vision now due to an eye disease so i would really struggle

 

the thing is that i would love some good involvement from specialist,social services etc but every agency or whatever you call it that i have dealt with has been rubbish

 

i can fully understand where paula is coming from as when theres no help there you are totally on your own,no one answers my calls,rings me back and i end up feeling stressed because they are so useless if that makes sense,theres always a bit of me that thinks help must be arriving soon but ive been waiting since dx and theres nothing,hasent helped oday that steve has been very violent lately,not to me but doors etc and i feel low,then i get my strong head on and think that these people who should be helping need a kick up the backside and should do what they are bliming paid for

 

well tomorrow is another day in the hev household,lets do some positive thinking that it will be a good day for all of us <'> <'>

[soraya]

thinking positive vibes for tommorow for everyone struggling out there <'> <'> We will survive!!!

[JsMum]

Hi Hev, as you clearly need the support given I would keep a log of all the dates and times of visits and if missed because of illness then note it down, if after a few weeks it is repeating then write a letter of complaint and keep repeating it, I personally think that is exactly what some social services want parents to do, give up and leave and do it alone, just think though if everyone did do that then there would be no Social services, it was orginally set up to help families in need.

 

I would keep on fighting, its not just for you that your fighting for but steve and Katie and the family as whole.

 

You keep up that fighting spirit of yours.

 

JsMum

[pearl]

I'm so sorry you are not getting the support you need Hev. We were pretty lucky with the peeps who were involved with us, however the ones that didnt deliver the goods made me SO frustrated, they are paid to do a job & arent doing it properly. Its not just autism, same thing happening with my mum, constantly on phone to Care Agency cos theyve overdosed her pills etc, such incompetence.

 

So I know how upsetting it all is, take a breather but keep on asking, v few of us are strong enough to go it alone (no offence Paula if its worked for you) only you know if you could do that.

[Clare63]

Sending you lots of positive vibes for a good day tomorrow

 

I get where you are coming from, its all sooooo frustrating, and we have to wait soooo long for people to do stuff, in the meantime we just struggle along. Like you say these people should get a kick up the bum and get on with the job they are paid to do. That's fighting spirit Hev, you go girl.

 

<'> <'> <'>

 

 

Clare x x x

[Eva]

Hi Hev,

 

sorry to hear that all those professionals are so useless. Have some of these <'> <'> .

 

Hopefully you'll come across some helpful people soon. (Well, you never know your luck).

 

Cheers,

Eva

[Paula]

<'> <'> <'>

 

Hev i did what i thought was right for my son and you must do whats you thinks right for youre son.

 

 

As they get into there teenage years its a blasted nightmare with all those hormones floating around,my son is 14 in January hes now topping 6ft and when he decides to blow you run for it...........

 

Im sorry i ranted on once i started on me whinge about the system it all came flooding out.

 

 

I realy realy hope you find a solution to this Hev or stumble upon people who are good at there job and actually do what there paide for.................

[stressedmumto2]

Hi Hev, i must be so frustrating for you having services come and go and the others you're having to fight so damn hard for. I go through stages like you are in now with wishing s/s had no involvement because sometimes they stress me out even through lack of support, but even though the service we get don't work sometimes i.e. son refusing to go with his respite worker on the occasions he does go it does make it all the worthwhile because me and his sister have a few hours break from him to do something nice and this keeps us sane!!

 

I think the best thing I do when I get angry with lack of support is fight back, I'll go through stages when I wont speak to anyone on the phone if they need to contact me they can do it in writing or e-mail and I communicate with them the say way, I can be here crying my eyes out but they don't know my emotions and that makes me feel better. They can't do much to help when I am breaking down, not only that but then I have records of what I have asked for their reply's etc and then i'll complain about it, for me this is all I can do now. We are quite lucky with support we are getting but it has all been done through complaining, writingletters, keeping diaries etc. I think you need to find your own agency who have experience in dealing with children with Steve's complex difficulties and I think they would be much more understanding and get s/s to fund their involvement. I done this as social services at first refused to help as they had no one who could manage my son but the agency cost so much that they soon found their own repite worker who can cope with son but as he doesn't understand him he still gets it wrong from time to time, but then don't we all.

 

My son was at home with me for over a year he's younger than yours but he can become very violent and it was hard work, he refused after a month or so to do any work with me and I think you would drive yourself mad home-schooling Steve, even just being in their company 24/7 is hard work!!

 

I hope you're feeling a bit better today, take care <'>