need to sound off

[stressedmumto2]

I am so utterly fed up and I just don't know what to do anymore. I love my son but at the mo' I think we just have a hate hate relationship. He needs me for his needs and his needs only and i just want to give up.

 

This week alone I have 3 meetings and CAHMS are gonna be here any minute and all I wnat to say is for someone to take him away, how cruel am I? I just can't cope with this life anymore. He's not been really difficult or anything, it's me I just can't cope.

 

All I do is battle to get help and services, attend meetings and things get twisted, the minutes are reflected on what they hear obviously not what I have heard and said too.

 

I recently had independant assessments done for tribunal purposes which my paed has said he will not have time to read.......it has only taken two months for him to tell me this and he won't re-refer us to specialists even tho they said they are happy for a re-referall and to come to our home because when they assessed previously they couldn't do any assessment due to son not co-operating.

 

Where do I go from here? I am so fed up, seems like noone cares or wants to know, yet they all claim they do. I am lucky I am getting respite but it just doesn't feel enough. I just can't cope

[KarenT]

Hugs for you, stressed mum.

 

I'm sure there are dozens on here who can understand what you're going through. I had a spell like that a couple of weeks ago, just felt like I couldn't take it any longer, felt far more down and lonely and worthless than I ever have. I too didn't want to continue, felt that all my efforts were in vain and what was the point of trying so hard to build a future for my son while everyone else seems intent on knocking it all down. It all felt so meaningless, especially as he was having a tough time and nothing I was doing for him seemed to help.

 

My way around it was to allow my self to wallow. I just couldn't pull myself out of it so thought I might as well let it happen. Usually when I feel down I just dust myself off, hitch up the happy face and get on with it so nobody ever knows how cr*p I feel inside. Well this time I thought no, I'm going to wallow in self pity and feel sorry for myself because that's what I feel like doing. I work bl**dy hard for J and sometimes it's all too much to bear, and on that occasion I needed to let it show.

 

I know it's hard to do in real life, but try to get a couple of hours off from all this, put 'the issues' aside and take a break to be you. Even if it's just a bath and a book, you have a right to be who you are and not just someone's carer.

 

Take care of yourself

Karen

x

[Frangipani]

Can I give you both a big hug <'> <'> <'> <'> <'>

 

To be honest I have been feeling a bit flat myself lately too. I decided yesterday I am allowing myself to drop my standards sleep in and wallow in self pity and enjoy a glass of red wine, and I normally dont drink.

 

I have had days feeling just like you, then I just try and do one thing that feels good just for me and forget about ASD for a while like go to the plant nursery and buy some new plants and plant them in the garden and watch them grow or flower.

 

Listening to Mozart has been strongly advised to be successful when you are feeling like .... I have to say, when I pop this sort of music on I just automatically go into autopilot and start doing stuff and amaze myself.

 

Give yourself permission that its okay to be flat, tomorrow is a new day. When my son is his worst I just go and give him a hug and tell him he is the best son in the world, as I know, he just cant help it, and doesnt remember half the stuff he dishes out.

 

Hope you do something just for you even buy some nice essential oils like Lemon, Bergamot, Lavender or Rose they certainly lift the spirits, pop a few drops in the bath.

 

Remember you. <'>

 

[JsMum]

Please please dont give up, he needs you and all the system will do is mess him up even more, so please dont give him to them, the social services care system is over flowing with boys with needs similair like yours and they cant meet their needs.

 

please take some time out together a long walk along a nice beach somewhere, and rethink together what to do, its come to crisis but its doesnt need to end in the way that so many other families have where suicide and care is the only answer because it isnt, please even taking your life it will not improve any of the needs your son has, and the loss will be detrimental as you are aware I am sure.

 

I have to go right now as I am too off to see another doctor for J, but I want to quickly say NO DONT do any of the things your thinking, I know you can do this, your a determined mother and you are strong, what you need is some time out together and rethink.

 

JsMum

[Frangipani]

Please please dont give up, he needs you and all the system will do is mess him up even more, so please dont give him to them, the social services care system is over flowing with boys with needs similair like yours and they cant meet their needs.

 

please take some time out together a long walk along a nice beach somewhere, and rethink together what to do, its come to crisis but its doesnt need to end in the way that so many other families have where suicide and care is the only answer because it isnt, please even taking your life it will not improve any of the needs your son has, and the loss will be detrimental as you are aware I am sure.

 

I have to go right now as I am too off to see another doctor for J, but I want to quickly say NO DONT do any of the things your thinking, I know you can do this, your a determined mother and you are strong, what you need is some time out together and rethink.

 

JsMum

 

Thanks Jsmum I can relate to that too the system wont look after them as you can. But their are people like Bid that say sometimes this is the best thing. Perhaps you could talk with Bid.

 

But I totally agree with Jsmum's last paragraph and want to send you lots of these <'> <'> <'>

 

F xx

[stressedmumto2]

Thanks for the reply's, yesterday I was in such a mess, it just seemed one thing after another and I could feel myself suffocating.

 

I contacted the education physc who has supported me all he way through this and today I will be getting a call form an independant social worker who is going to advise me about the possibility of my son going into foster care for a short while. I have tried the beech thing, we done that on friday on saturday we also went out and on sunday I had the day to myself but come sunday evening I didn't want to be home when the children were brought back to me form the day out with their dad.

 

Things have got so difficult at home, I don't feel I am strong enough to cope anymore, every small matter is getting me down and I think if we don't have a break away from each other I am really scared I could hurt my son. I asked a few years ago about behaviour managment for myself but still i'm two years down the line and not had any support of that type apart from what I have self taught myself and it's not enough.

 

The meeting with CAHMS yesterday went ok, he has said he will defo look through the reports but still can't diagnosis and will speak to see if anoher paed will take my case on but he said the paed I have may just share the case wih another paed, so I will still have to deal with a paed who can't be bothered to look through my independant reports nor re-refer me saying that he think's my son has been over-assessed, when the truth is most people have not been able to assess him.

 

Today I have a meeting at the school, that I didn't even want son to go to but due to loosing my tribunal he has too, he will be there for approxamtly 5 weeks and then break up for the summer and there's no guarantees he will even go. I also had a call last night from a lady whose son started at the main school only a week ago and already he has been locked in a room for 2 hours, crying screaming to be let out and wasn't let out till home-time, this school scares the hell out of me but instead I have to tell son it is going to be good for him because that's what the professionals tell me as it's me that is then making him not want to go.

 

On Thursday I have a child in need meeting where once again professionals can sit around say what they will do and what they wont do but it's all short term

 

I will have a chat wih the social worker and see what he advises me. I don't want my son in foster care I really don't, but I just can't see no way out for us at the moment.

[mossgrove]

We had a period like you describe a couple of years ago when out eldest two were in mainstream. We were very lucky with the professionals we dealt with and I appreaciate that not eveyone is that lucky.

 

Have you spoken to your GP to see if he can give you something to help you deal with the immediate crisis? It's not a long term solution and it can see like admitting defeat, but it is a step I took about 18 months ago because I needed to.

 

Please keep coming here and and unloading as often as you need to. We are all rooting for you and understand how hard it can be. But things can and do get better in time. I am glad you have your Ed Psych as having even one professional that understands and cares can make all the difference in the long run.

 

Simon

[steviegirl]

I am so utterly fed up and I just don't know what to do anymore. I love my son but at the mo' I think we just have a hate hate relationship. He needs me for his needs and his needs only and i just want to give up.

 

This week alone I have 3 meetings and CAHMS are gonna be here any minute and all I wnat to say is for someone to take him away, how cruel am I? I just can't cope with this life anymore. He's not been really difficult or anything, it's me I just can't cope.

 

All I do is battle to get help and services, attend meetings and things get twisted, the minutes are reflected on what they hear obviously not what I have heard and said too.

 

I recently had independant assessments done for tribunal purposes which my paed has said he will not have time to read.......it has only taken two months for him to tell me this and he won't re-refer us to specialists even tho they said they are happy for a re-referall and to come to our home because when they assessed previously they couldn't do any assessment due to son not co-operating.

 

Where do I go from here? I am so fed up, seems like noone cares or wants to know, yet they all claim they do. I am lucky I am getting respite but it just doesn't feel enough. I just can't cope

[/qu

I expect you have probably got in touch with your MP, however have you any members of your family or friends that can do so on your behalf. I wrote to Tony Blair and also our councillor for our area. We have a good local MP and it seems strange that as soon as I complained and said my daughter Hev can't stand much more they all came out the woodwork. I wrote that I thought it was digusting that my daughter had been driven to go on Prozac and things were now desperate. I also wrote we had both been in british army, worked all our life, paid taxes and we need help for my grandson and daughter and is that too much too ask. I also said I had wrote to Tony Blair. Our MP got to work straightaway on it and Hev started getting phone calls. Steve is still the same but now she has Mondays and Fridays all day respite and LEA and Hev are looking at residential schools, which we were opposed to but not anymore as he needs help for his future. I even email the MP to let him know any results as he said to keep in touch. If the LEA and social services start messing about I will report them again. Probably you have done all this have you? If you have well become a bl....dy nuisance!!!

[bid]

Thanks Jsmum I can relate to that too the system wont look after them as you can. But their are people like Bid that say sometimes this is the best thing. Perhaps you could talk with Bid.

 

But I totally agree with Jsmum's last paragraph and want to send you lots of these <'> <'> <'>

 

F xx

 

Oh dear...Fran, my son went to a residential school, which isn't the same as residential care.

 

I have no experience of putting a child into residential care at all.

 

Stressedmum <'> <'> you sound like a family 'in crisis', and this is the 'buzz phrase' to use when you talk to the professionals. From my experience, it seems to make them take action. Sadly, I've found that it is only when a family reaches this stage that things get done, which of course is ridiculous as we need the help and support to prevent things getting this bad.

 

I'm sorry, I don't know if your son is on any meds, but if he isn't you could perhaps talk to his consultant about something, even if it's only a short-term measure?

 

The most important thing is to keep telling the professionals what is happening, even if you feel they aren't listening.

 

Do you have any medical support for yourself, as you sound very depressed <'> Again, maybe you could think about meds to support you through this time?

 

Please keep talking and tell us how you are <'>

 

Bidxx

[stressedmumto2]

Hi Bid,

 

My son is on med's and they do work very well, it's the in between times i.e. eraly mornings before he's taken them and when they are wearing off at night which are the difficult moments. I also think that having him with me at home for a year has kind of ruined our relationship, how I wish we could get that back and be how we used to be and I am aware that if he goes to foster carers it may make things a whole lot worse.

 

He is on meds, many meds and I am too, I don't think I am depressed just very fed up. I cover it up when I talk to others and come across bubbly and wanting to do everything I can, but really at the mo' I can put stratergies into place but I am too tired to follow them through.

 

I have just got of the phone to guys and they won't re-assess even though they were the ones who told my ed physc they would be happy to come to our home to do it so he wasn't stressed with the transition, what's going on here? why say it then change your mind, money I guess

 

However the receptionist has told me that she has quite clearly put again in a letter that he needs residential school and he comes under the ASD umbrella and gone into great detail explaining the ADHD, ODD, PDA, AS. I am anxiously now waiting for the draft to come through and I guess that even though they wont re-assess at least they are still stating he needs a residential school and I hope they have explained his dx a little clearer.

[smiley]

<'> You sound so thoroughly beaten up and defeated <'>

 

First step is to get yourself stronger - you said you're on meds yourself (im assuming anti'd's - sorry if that's too personal ), these are obviously not working hun <'> . In order to care for your son, you need first to be able to. You need to grab all the support you can find - increase resite if possible - have you asked any local charities (ie; Mencap) if they offer befriender schemes? CAF (contact a family) might be able to point you in the right direction. Is there anyone who can help you look for things like this?

Sorry - just realised how that sounds.......... I am most definately NOT saying that this has all come about because you are feeling low. You've gotten to this point because the support and care that should be available to your son and you has not happened. I'm just thinking, if you can get yourself some help to get through this - it may help you to feel stronger....... Hope you get what i mean!

Usually when I feel down I just dust myself off, hitch up the happy face and get on with it so nobody ever knows how cr*p I feel inside.

I can fully understand what KT means by this - it's one of the reasons i chose 'Smiley' as my username, and is a nickname i've picked up because i'm always grinning - doesn't necessarily mean your happy though eh..............??

There does come a point when you can't just 'stick on a happy face' and things get way too much - i've certainly been there, and i'm sure there are many others here who have too. It's a horrible feeling. I was telling a friend today, when i'm feeling that low - i don't have the energy to help M through a difficult 'thing' for him (ie; going to the shops), so i just don't go - and life becomes smaller and smaller - ending up being unable to do anymuch of anything - and as a result - M becomes more intolerant of things - making his reaction to those 'things' worse................. and around it goes in a vicious circle..

You need support hun <'> However that comes about. If you feel that needs to be from a temporary foster care placement, then so be it - you know yourself and your son best - i've no idea how i would be with my son home 23/7 for a year - it must be very, very hard work - especailly, as there is no support for you.

But, if you want the foster care because the professionals are not doing there jobs and supporting you - then that's not right. You shouldn't feel that the only way you can get any help is to go down that route. <'> <'>

Sorry - i've rambled on there a bit!

Hope your feeling stronger sooner - and keep talking, i don't always reply to every post - but i read them, and i'm sure others do too. <'> You're not alone <'>

[baddad]

Hi stressedmumto2-

Sorry things are so hard for you right now <'>

There's lots of good advice already about contacting MP's and pushing for extra respite, and I'm not sure I've much to add to that.

What I did want to say is that there are all sorts of reasons why people might have to make difficult choices about things like respite and (short term and long term) fostering.

That sort of support can be crucial in keeping families together, with the long term benefits far outweighing any possible drawbacks.

I hope the advice you have found here helps you to find some solutions to your problems and that the support you need comes quickly and with the least amount of upheavel for you all. However that happens, do what you need to do for you and your son, not what others think you need to do.

 

L&P

 

BD.

[stressedmumto2]

Thanks for the replys and the good advice. Smiley you describe how I am feeling now, I didn't realisethat maybe it is a depression thing, I hate to think of myself as being depressed but even getting the weekly shop or just popping in the shops up the road or visiting the gp with my son feels too much to cope with.

 

I attended the meeting at the school today and nothing was achieved. They wont provide a weekly home school book even though it was agreed at an education meeting a few weeks ago that it may be beneficial, they said they would prefer it if I called the school daily. As for first and then boards, time-tables, social stories they will assess him there to see if he needs them but they said he had one day there and he knows what the time-table is they also don't want him to appear different to other children. I was refused a 1-1 worker to spend approx 10 mins daily with my son at begining of day and end of day cos they don't want him to appear different cos no other children have it there. There were loads of other issues brought up and it's so distressing.

 

The approach we are to use with getting him to school is for me to now drive him there (before he had escort and driver) if he is kicking off in car kicking windscreen or grabbing steering wheel I am to pull over, leave the car and walk away and return back to him when he has calmed, hide behind a bush so he has no reaction from me, if I get him to school no problems then to call them when I get outside and they will then come out to open the gate, if he refuses to get out of car, to walk away again giving no recation and if he beeps my horn till the police get called then so be it.

 

It's this that scares me, that I am to have to go through it all again, whist they keep my son coped up in a small unit all day so he can explode when he gets home because they only have a small playground he can't use it when he needs to let of steem and if he is to use the main playground then he wont be able to for a few weeks till they feel he wont run off.

 

I feel I got nowt out of the meeting

[dooday24]

sending u loads of these <'> <'> <'> <'> i know how u feel u r allways banging yr head against abrick wall all i keep getting told is the govrnment want to help parents with special needs children but we dont see any of it. i am on a high dose of antidepressants and find it hard to get through day 2 day things. have been refused any sort of respite as i am not needy enough!!!!!. hope things get better for u both thinking of u love donnaxxxxxxxxxxx

[westie]

It sounds like you have a lot to cope with and no support from the school or the authorities. How old is your son? It is terrible how unhelpful the school are being. If your son is disruptive at school he will likely be noticed by the other children anyway (sorry I hope this does not offend you but I know from personal experience as my son can be very disruptive at school and the other kids have noticed - luckily after a time they seem to take it in their stride and do not get so frightened - some do know how to press his buttons though so its not always perfect but most of the kids are really good) so I do not think that being "singled out" is a valid excuse for not giving him some support for some time during the day.

 

I hope you do find a solution and I know that sometimes depression is not apparent to the person experiencing it, but I hope that the support you are getting from this forum is helping you, and that you do get some help from your doctor if you choose to go and discuss this with them

 

<'>

Edited June 12, 2007 by westie

[Kathryn]

Stressedmum,

 

Just sending loads of these <'> <'> <'> wish it was more.

 

Sorry to hear the school meeting was so unproductive, the ritual they expect you now to go through every morning to get your son to school sounds extra stressful - how long are you expected to keep that up?!

 

I hope you manage to get the respite and help you so desperately need and I agree with Bid - keep talking to the professionals and telling them how difficult it is. You're coping so well but you need support NOW!

 

Keep talking to us, we're here to listen. <'>

 

K x

[Bagpuss]

<'> <'> <'> Sorry to hear things are so hard at the mo.

[JsMum]

I have just read all your posts and SM2 I feel so badly for you, I feel your been bullied into lots of things you dont have no real choice over, the car thing has to be health and safety issue, if he does flip in the car, you both might not make it to the side of the road but the nearest A+E throw an ATR, this also has be considered as health and safety because of the risk to other moterists, I dont feel that this is going to be safe and this really should be looked into again.

 

The fostering placement I feel you have been backed into a corner and now there is no real choice because of the lack of support and the strains on the relationships your now wanting a safer place for him BUT if you had of had some practical support at home then he wouldnt need a foster placement.

 

I also have to really stress that because you are now on Anti Ds and considered as Depressed the SS will want to make sure that he is safe when he returns back to you.

 

The fosterplacement really will need to be special needs foster carers and with support of their own or they wont cope with him either.

 

The school sound horrendous, if you locked J in a room he would have a panic attack, be destressed and wouldnt sleep for days, and he would do everything in his power not to go back to that school again, I am also concerned that this kind of situation doesnt work for children with PDA and Autistic.

 

I would be very upset and disgusted that they want to leave a special needs child crying in a locked room for 2 hours?

 

I would be really tempted to go on the telly ( I am sure Fern and Phil would help you ) and explain your situation that your driven to anti ds and a foster placement for your son because your not getting any support and your son is NOT Getting any specialism support and a proper placement, that school is doing more harm than good, breaking the code of the word HELP.

 

I just really do get the feeling your backed into a corner throw lack of support for you both.

 

Is there any way I can help as I am just worried about the term of the Foster placement and I get the feeling that the phrase " a break", may become tempary ( class as 6 months) and then the word permanant after the 6 months have been used three times.

 

Would he still have to go to the school if he is going into a short term foster placement?

 

And will the foster parents take him to school like you are expected to?

 

I feel so redundant and like I cant help you because what you need is defenatly what your not recieving even if it goes into forstering because its unlikly they could place him where the Foster carers could meet his needs which defeats you placing him in Foster care, also how can you and him work things out if the school and foster care isnt the right resources he needs?

 

He will need to be in a state where he feels safe, and secure, recieving the correct support before he can be expected to then start any family therapy where you both can rebuild the relationship.

 

This school placements isnt going to get him to the state he needs to be and at the end of the day whos to say you can fully trust Even Foster carers, what if your son makes them snap too!

 

Thats why I am suggesting that even though you/him need a break, the placement needs to be specialised.

 

 

JsMum

Edited June 13, 2007 by JsMum

[elun1]

<'> <'> <'> Stressedmum

your post is heartbreaking - how disgusting you are not getting the help you need and it has come to this. I agree with J's mum - finding the right foster carers will be a huge challenge for SS and I just wonder how seriously they will try to get it right. I really do naot mean to make this any harder but when I was offered overnight respite for ds2 I was DISGUSTED at what we were offered. He needs a specialist placement and I just wonder what support his carers will get as they will surely need it too.

What a ###### unfair world it is.

Hugs to you, wish so much I could actually do something to help you

Elun xxxxx <'> <'> <'>

[JsMum]

<'> <'> <'> Stressedmum

your post is heartbreaking - how disgusting you are not getting the help you need and it has come to this. I agree with J's mum - finding the right foster carers will be a huge challenge for SS and I just wonder how seriously they will try to get it right. I really do naot mean to make this any harder but when I was offered overnight respite for ds2 I was DISGUSTED at what we were offered. He needs a specialist placement and I just wonder what support his carers will get as they will surely need it too.

What a ###### unfair world it is.

Hugs to you, wish so much I could actually do something to help you

Elun xxxxx <'> <'> <'>

 

The problem is all the social services will do with this is look at as an ACCOMADATION issue, and if this is reguarded as an emergancy respite foster parents then there is always lack of information passed onto the foster parents, as they are so thin on the ground and so once they have a bed going its sort of well its a case of " oh mum needs a break, a bit depressed, that sort of stuff," they dont have to go into any of the behavioural issues and they instruct the foster parents to phone them if they need any help, and they do a quick exit and everyone here knows how hard it is to get back intouch with these ss people, they dont want to talk to the real parents never mind the foster parents who now wants a more suitable placement for the child their fostering, and then its them who are fighting for what we fighted for.

 

JsMum

[bid]

All of us here have very different personal circumstances, as well as opinions and so on.

 

Sometimes people have to make extremely difficult decisions for reasons we know nothing about.

 

I know we would all want to be sensitive towards those who are going through a really difficult time and having to make these kinds of decisions.

 

Bid <'>

Edited June 13, 2007 by bid