Completely Out of my Depth.

[dixie]

Big Sigh,

 

 

I am sure you have all come across my situation so many times, I am at an utter loss which direction to go,

 

I have been a long term Carer to my Son, He was diagnosed at 3.5 years approx 2001, He will be 16 in May this year, The diagnosis on the letter from his specialist was written Autism, this then changed through the years to Aspergers as more was learned about the condition, it was picked up on a health vistor review and they referred us into the system, with his non communication, it was just echolia.

 

Through the years we have faced many many hurdles, Skin sensativity to weather, Wind or the rain freaked him out, so he would not walk in it or had a massive meltdown to the point of vomiting School run 4 times daily, was exhausting at that time,, all the usual difficulties associated with aspegers, Panic attacks which he was put on medication for, He still has night time enuresis, etc etc,

 

I will not list all the difficulties, but suffice to say I feel totally out of my depth with the new changes and decisions, He has a indefinate DLA award, which they have now wrote and asking him to apply for PIP as he has turned 15 and 7 months, I was expecting this, but not so soon, When I first read about it, I was under the impression it would be 18, and I hoped that My son would be more ready to function, anyways to cut along story short, I have tried to speak to my son regarding his descion on claiming for PIP, I say spoke to him, two short snippets of conversation as my son gets angry with me and refuses to speak about the matter, he is 6 foot 2inches tall, and has agression issues, I have had to lock myself in the bathroom to escape from his tirades in the past, so conducting a conversation of this nature with a teenager who can be aggresive in nature has been not so pleasant, he hates the fact that he has aspergers, and won't admit that he needs help, but the reality is that I cannot leave him to care for himself, He needs encouragement to shower, he will lie in a wet bed for days if I let him, not caring that he is lying in urine soaked sheets, he cannot cook for himself because easily distracted. Meltdowns, Budget handling. Time Management. Getting him up. So many more issues, that come into the day to day life of caring.

 

My son has flat out refused to entertain claiming, yet he is not capable enough yet or mature enough to understand the life choices he is making not only for himself, His DLA enabled me to support him, on his needs. I have no family support at all, his caring has come down to first for along time with myself, then when I remarried it has fallen to myself and my husband with no outside help, He is not ready to fend for himself yet, but financially these new changes and the choice my son has made is going to force me into a position where I will have to leave him on a daily basis on his own to care for himself. I am scared half to death on having to do this, because he is just not ready. Yet my hand is being forced into leaving him.

 

I feel utterly despondant as a mother, i gave up all career avenues, doing the right thing on making sure he was safe and looked after, in the time that I have been caring for him, he has brought down two ceilings, set fire to an electric blanket by accident, and blown all the electrics by flooding from the bath, I had to stay at home and care that his difficulties were met, The last ten years have been hell, no social circle, no friends. No career. So now I am left with my son making financial descisions because he is going to reach 16, he does need the help, I have been desperate to work for years, yet his needs prevented this, So the years passed, He will not attend an assesment for PIP, this much I know as just getting him to any hospital appointment, has been a shouting match, weeks and weeks of I am not going,

 

I have no idea where to even to start, How do I explain such a gap in my CV? Bring your CV, ok I will hand you two pages of blank paper. On a personal note I feel, worthless, my confidence level is non existant, How much more do you have to give? My life continues to be ruled by Aspergers. I may come across of Whiney, or Self indulgent, truely this is not how I wish to be perceived. I am just lost,

We have nearly self destructed as a family, due to the aspergers, my son stopped talking to my husband for a year, we have been involved in many family services, which he refused to attend. He is vulnerable and has needed alot of help over the years, but now just because the govenment has declared him an adult at 16 it means automatically his needs are to be forgot.

 

This is against my nature, I really thought I was doing the right thing giving up my life so his would life would be met. Now I just feel so worthless, the pressure of having a difficult homelife has took its toll through the years. I just don't even know where to start. How do you word on a CV Whilst the rest was creating career and prospects you was being attacked, verbally abused, up to your elbows in wet bedsheets, Manic with trying to deal with the pressures of Aspergers, but still got up daily to face each battle? I can't even give two referees because I don't know anybody.

 

I know I would have not have worded this at all right. Please be kind, as I really can't cope anymore with the pressure. I am weeping now as I speak.

 

 

 

 

 

 

[oxgirl]

Hi Dixie, I'm so sorry you are having a rotton time. I know exactly where you are coming from, my son is 20 and in a similar position. Just because they are classed as 'adults' doesn't mean they can suddenly become independent. Do you have any Social Services involvement who might help you with the application for PIP? Have you managed to fill in the form? When my son was 16 and had to re-apply for DLA, because he couldn't cope, I gave him the blank form to sign and then filled in the rest of the form myself. Would your son sign a piece of paper if you just put it in front of him? Could you explain to the assessment people that he refuses to attend and act as his representative? I know it is hard, my son also hates his AS and does not want to acknowledge it. We are currently applying for ESA and he has forms to fill out, which he can't cope with. He may have an assessment also.

 

When it comes to jobs for yourself, I was in the same position two years ago. I'd been trying to look for work and after two years finally managed to get a part-time job, just 13 hours a week. On my CV I just put my previous work experience and then said something about being full-time carer for my son, who has autism. The gap in my CV did make it take longer to get work, but finally somebody did give me the chance and they will give you the chance too but it may take a while.

 

I know what this life does to your self-esteem and sense of self-worth. I became very ill psychologically but feel much better about myself now that I can get out and do some work for a few hours a week and be myself. What about volunteering in a local charity shop for a couple of hours? At least it would get you out of the house and interacting with a few people and you might start to feel a bit more like yourself again. We certainly lose ourselves to autism and it takes time to get that confidence back.

 

Is your son at college or is he also looking for work? Maybe he could also volunteer if he was willing? I bullied my son into volunteering and he doesn't really enjoy it but at least it's somewhere for him to go and something for him to do.

 

I hope things start to improve for you soon.

 

~ Mel ~

[dixie]

Hi Mel, Thankyou for your reply,

 

Letter came 21st of December, Which of course made Christmas most enjoyable, the worry of it all has not left my mind, I have till 12th January, to get the reply back letter is just the one that asks if your intentions are to claim PIP, broaching him with it has clearly indicated that is not going to be an option, to demonstrate the fact here is a chat transcript of the last 30minutes.

 

Son saw the paperwork out because I rang them this morning.

 

Son......."What are they?"

Me.........just the paperwork that I need to sort out....Can we try this again and have a civalised conversation about it on how you want to proceed.

SON......ARMS UP IN THE AIR.....SCREAMING AT ME.....I TOLD YOU.....YOUR NOT USING ME FOR MONEY!

Me........Trying to explain that this is not the case, that he would receive the payment.

SON.....DON'T YOU GIVE ME THAT......I DON'T NEED ANY HELP!!!! scream crash bang wallop. round the house.

ME.......Christian, don't talk to me that way, (I must admit I got a little angry at this exchange) at his suggestion that I am trying to use him for money...Very much not the case. I would just like to retain carers, as that is what he needs help with. Me caring for him.

 

So the next exchange that explains my responses to the next exchange...

 

 

In the next breath

 

SON.....Can you make me something to eat,

Me....(still angry and hurt), why you don't need any help? you will have to do this on your own now.

SON.....DON'T GIVE ME THAT YOU COOK FOR ******* (STARRED OUT 19YEAR OLD SIBLING)

Me....She looks after herself. She cooks for herself...

SON....DON'T GIVE ME THAT, WHY DID YOU COOK HER A MEAL LAST NIGHT.

Me....it was a family meal, (full roast dinner) if she wants a snack she cooks it herself.

SON....YEAH YOU TREAT HER DIFFERENTLY THAN ME., I WILL STARVE....DON'T MATTER.....

Me....come to the kitchen and I will teach you and stand with you whilst you do it.

SON.....TOP OF LUNGS SCREAMING AT ME......THATS RIGHT....YOU LEAVE ME TO STARVE, DON'T MATTER I WON'T EAT.

 

 

 

 

So crying over fried eggs of all things, I made him two egg cobs, he just would not understand that, cooking a full roast is far more different than getting yourself a snack.

 

The last thing I wanted to do was take care of his needs, anybody else you would leave them to it, and make them get there own, No chance of him filling out any forms, part of the problem is that his father, my exhusband has been in his head for years telling him hes not autistic, and i am only trying to use the benefit system.

 

He has been non supportive all the way through bringing him up, myself and my now husband have dealt with everything.

 

Social are not involved, I was told that the social services would not help because of Christians upcoming age, We were handed to Child behavioural, and 123 magic when he was 14...123 magic for a 14 year old. Was never going to work in realistic terms.

 

On the work experience front, I did try but homelife again prevented that, I have one thing in my favour, I managed to secure some qualifications, I did my ICQ for IT USERS level 1 and 2, database spreadsheets and so forth, and I have been trying to get my maths and english done, to help me on my CV, I currently have level 1 Maths but I am in the middle of Level 2, the college would not let me do my English till I finished the Maths, So looks like I will have to give that up as well.

 

The only thing I can see is, if its picking up litter anything, I will do it, but looking through the jobs, I am underqualified to even be a cleaner these days. So much pressure for me to come up trumps and get on the playing field. Just speaking to people is so overwhelming as I have not been out of the four walls for years, my family are in Manchester, I live nottinghamshire. It has always been me the four walls and caring for my son.

The big issue for me is my son making the decsion based on teenage asperger drama ideas, and not comprehending what me staying at home as his carer has entailed all these years, and what help he actually needs. He is trying to get into college at the moment, academically he has the requirements, but his social skills let him down, so the first interview did not go down well, thankfully they have gave him another chance to prepare himself, but if he does get into college its the small things, like taking a shower before you go, so that you don't smell of the urine that you have slept in. His meals, time management to get there, that the world is not on his time. He is saying he does not need someone to oversea these things, yet the reality of it. He does, because if that is the case why are all these things not happening now... If I thought he was capable to be left alone for a day etc, I would have done just that. There was neither the option for me to take night work as his relationship with my husband had crumbled to such an extent that like I said before we nearly lost our marraige, thankfully that part has gotten a little bit better and their relationship is much better.

The other day, he had a complete meltdown on a very rare visit to his grandmothers house overnight, Why because they were watching casuality, I received a phonecall, saying he would not come out of the toilet, because it was on.....Its something we never watch here so its was a new one on me, after a couple of hours in the toilet, they managed to coax him out. I have no idea why he did it, or what panicked him. I was not even there, even though he sometimes acts and looks capable, there is so much more that goes on that you just can't rationalise. Yet he is making the judgement that he does not require help.

 

I am witless to leave him, to his own devices. Yet in a real world, it is not financially going to be possible. Thats even if someone will give me a chance.

 

I possibly should come back to this thread when I can voice my feelings better, after another tirade, I fear my thoughts are quite disjointed.

Edited January 2, 2014 by dixie

[nippy sweetie]

Oh Dixie- what an awful situation for you. I would suggest immediate contact with Social Work and also ask your GP to arrange an urgent assessment of your son`s capacity to consent. It doesnt sound to me that he currently is capable of making informed decisions.I reckon you might have a difficult time ahead (as well as behind you !!) but, try to identfy your priorities and also the key people who might be helpful.

My suggestions would be:

1) try to give a "holding" response re the PIP letter. Say that he`s under assessment or something. Your GP might be able to give you a back up letter. He should be referred for an assessment of capacity. Adult Mental Health should be able to do this. If they refuse then press the GP to find out who will do this. This situation is intolerable for the family.

2) contact your GP on your own account. You are at risk of depression if not actually suffering it now. If GP notes this it might also add to your case for more support

3) contact SW. Outline your difficulties with your son. If he finds out or quibbles say that you are seeking a carers assessment which is what you need too.

Can the School be helpful at all eg in contributing to an assessment?

4) If he becomes violent dont forget that the Police can be helpful. Actions have consequences and your son is old enough to learn this. I do know its an appalling prospect for any parent to contemplate though.

5) Re your career. Your job has been a a carer. This is accurate and involves many key aspects required for many jobs.

 

Most of all keep on keeping on. I know its very hard indeed. I hope things settle down a bit but also that things start to get organised for the next part of his- and your- life.

My mantra is always "this too shall pass". You wont always be in this exact situation but its so hard to see at the moment. With sincere best wishes.

Edited January 4, 2014 by nippy sweetie

[smileyK]

I used struggle with daily battles like you describing with your son , I have AS, Dyspraxia , Mixed Anxiety & Depressive Disorder ,Socia Anxiety Disorder & more recently current fresh diagnosis of adult combined type ADHD

 

I never thought I'd be capable of learning anything really slowly but surely small realistic achievable steps now looking back feel like someone else my independence skills have come on leaps and bounds , - can now be left on our own ( me and my twin deaf -blind brother) for a long weekend by ourselves or even for 2 weeks when our parents are now enjoying freedom of what should have been experiencing years ago but due to having their lives on hold due to having us with different types of SEN's time where this would fill them and me with worry,dread ,anxiety and thought this was mountain milestone can be challenging but again rewarding when complete a task others take for granted! think nothing of but for us takes so much more energy drains us !

 

I started volunteering which got me into a part time job as bank staff/lunch time assistant ( 5 hours a week) now at big chain company of nursery doing 40+ hours a week senior room manager thinks I'm ready to start new step /challenge which NVQ3 and going on full time work contact from casual work contract as bank staff/lunch cover I have had so many rollercoaster moments which have scared me silly thinking nothing ever going to shift into my luck,fate whatever want to call it! sounds like your son is depressed? I did have support workers from NAS ,have you looked into NAS (national autistic society) ? he may need find his interests /hobbies to get him motivated , confident? raise his self-worth ,self-esteem! always been really difficult struggle with me believing in me! never give up hope I think im living the dream wake up sometime soon my life is great right now felt like this! just waiting for go wrong!

 

XKLX

[matzoball]

It might be an idea to find some way for him to join a social group , or find a new hobby that he can excel at - quite often acting out means something is amiss that can't be vocalised. I would also suggest Cognitive Behavioural Therapy - may help him channel his anger.

[KathyM]

My advice would be to get a council welfare rights worker to run through a better off comparison, this way they can compare different routes to benefits that might help and lessen the burden. They will also help with PIP claims and in my experience are far better than Citizen's Advice. For example they helped my and my husband when they were trying to push us into ESA by telling us that we could claim IS as carers and avoid the whole thing, and be better off for it. Had we not had their help, I'd be forced into work despite being ill myself and having a blind husband and my autistic son to care for (and two other children).

 

On a personal note, I have a 16 year old in college who we haven't claimed DLA for because of exactly this problem. If he were to go to a medical, he would answer that he can do it all himself - he has a specific obsession with being "harder" than everyone, and part of this is the inability to let anyone see what he deems as weakness. He has turned down one on one support in college because he says he doesn't need it, he very much does.

 

I don't know what the answer is, this all terrifies me too, hence us doing without that money. We are "lucky" in that my husband and myself are disabled and therefore already get DLA for ourselves and this is what keeps me at home with him.