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Mental health

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i feel crap

9 replies

OneWaySystemBlues · 02/03/2011 09:38

Not sure where to start really. The main thing is that my son has autism and is 14 and is really hard work. He is in a unit attached to a mainstream school and is high functioning, but challenging. I had to give up my part time job last year, because I couldn't cope with holding down a job and dealing with all the phone calls from school because of his behaviour, the exclusions, the school refusal and the foul moods he would come home in. That is before all the appointments I had to take time off for - OT, CAHMS, Social services respite (ha ha), etc. He can be violent at times at home. He hits me and my husband when he's cross, and throws things too at times. He has no impulse control. He constantly needs attention, he has no friends so we end up trying to fill that role too - so even though he's 14, he's like a toddler in the amount of time he needs us to "be with him". We can't have friends round because he demands our attention all the time, we can't go anywhere much because of his routines and because he is phobic about animals, so anyone who has a pet is a no-no. Even the slightest thing that "normal" families do is a major feat of organisation for us to even attempt it.

I was relieved to finish work and at first really enjoyed it - not feeling stressed about getting to work when he's refusing school etc. But I feel so resentful that he affects my whole life in such a way. I literally feel as if I have nothing to live for. I don't mean I feel suicidal, I don't, but that all I do is exist. I get up in the morning and can't wait to go to bed again at night. I can't motivate myself to do anything because when ever I do it always gets interrupted by my son in some way or another. I don't have many friends any more - you soon find out who your friends are when you have a son like mine. I'm lonely, I'm bored, I'm hacked off and at times I just wish he didn't live with me. If my partner treated me like my son does, there's no way I'd still be with him - but I don't have a choice with my son. I do love him. But I don't like him.

I spent quite a bit of time talking to my gp last year, who would say I have mild depression, which responds best to counselling rather than anti-depressants and wouldn't give me anything. I've been having counselling on and off for years and it has helped by giving me strategies to cope better with my anxiety. But at the end of the day, no amount of tablets or counselling is going to change my situation. I need for my son to not be such hard work, because when things are going OK I don't feel unhappy. But they don't seem to be OK for much of the time and I'm just finding that I'm less and less inclined to make an effort with life, because I know it will all go to shit. I know I'm being negative, but I am so tired and worn out and have no reserves left. I wish I could just snap out of it, but I can't. I feel despair really, that my life will always be like this, that I will always be stuck and imprisoned by my son's autism. I don't have any ambitions or dreams any more. The only thing I look forward to is going to bed in the evening and the hope that one day things might get better. But as the months go by, I get less confident that they will. I don't know what I expect anyone to say really, but I just need to tell someone.

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MavisEnderby · 02/03/2011 09:46

Oh sweetheart.

I want to send you a massive hug.

It is so difficult having a SN child.Mine is only 5,luckily she is not violent(so far).I know she will be with me forever,and I just try to live day to day because the thought of the future just scares me sometimes,knowing she will just get bigger and stronger,and wondering if I will spend my life cleaning up shit(sorry to be crude but there was a trail this morning and I had to bath her before she went to school).I feel guilty about getting sad and frustrated.

Is there any way you can apply for some respite care?Does your LA fund this?Do you have a SW?I know this isn't going to solve the problem but you sound like you really need a break from the relentlessness.

Much love,Mavis x

madmouse · 02/03/2011 09:57

Of course you needed to tell someone. And you need to hear that what you are going through is hard and difficult and draining and that you not coping with all this does in no way reflects on your ability as a parent or your love for your child.

Sending you a bunch of St Davids while I can - you deserve them.

OneWaySystemBlues · 02/03/2011 10:03

Thanks. We've been awarded 10 hours direct payments a month from social services. But it's down to me to find someone to do something with him, which feels like a mammoth task. I'm expected to advertise, write job description, interview, sort out insurance etc, so it doesn't feel much like respite yet. I've approached an organisation that does specific work with people with autism, and I'm waiting to see where I get with that. It has taken ages to get this far - I first contacted sservices in November 2009, and we told we could have the hours and money about a year later after lots of appointments etc. It just seems to be taking ages.... I sort of feel like no one really cares that much, they just let you get on with it. Sad

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MavisEnderby · 02/03/2011 10:11

Ah is it the direct payments thing?

Do you have a care-coordinator type person?I would lay it on thick and insist they help you with the forms and advertising etc,explain that you are having difficulty finding the time with the current demands of your son needing attention 24/7

Are you new to the board?I would suggest posting in Special Needs section,there are a lot of mn on there with children with ASD,they may have suggestions about other sources of help/advice.My dd isn't autistic but can relate to what you say about everything being a struggle.Re respite,our LA does do short breaks for carers,I don't know if this is same where you are??(This is unrelated to direct payments)

OneWaySystemBlues · 02/03/2011 10:22

I'm a long time lurker and light-weight poster. Not posted on mental health before. Will try the SN section, but posted here mainly because I'm feeling so low and just can't get motivated to do anything. There just doesn't seem any point. I need to go shopping but can't even be bothered to get dressed at the moment.

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MavisEnderby · 02/03/2011 10:29

:(So sorry you are feeling like this.Can you go back to GP and talk to them again?

Is shopping an absolute essential today?Could you indulge in a lazy day and treat yourself to some me time?I did this yesterday,just lazed on computer,bubble bath,read book.I needed a recharge!!

If you feel up to it DO post in SN,I have found them to be a lovely bunch and understand how difficult it all is,a lot of parents with autistic dcs there.There are usually several people around if you need a rant.

Sending Brew and chocolate!

madmouse · 02/03/2011 11:13

I think you should post here for yourself so you can have some support about how YOU are doing - you haven't stopped to exist due to all this nor have you become just your son's carer. You are entitled to support.

Then get some practical and moral support on our fab SN board (I have a ds with special needs but much easier to manage - mild-ish cerebral palsy and speech delay)

bittersweetvictory · 02/03/2011 15:09

I also have a son with high functioning autism who is nearly 18 oneway and i can totally relate to everything you are saying, i go between wanting to protect him and wishing that he didnt live with me so i can get my life back ( and my sanity )
Im a single parent and have spent the last 11 years fighting SS for proper help and only in the last few months have i been allocated a SW who actually gives a damn.
At his last special needs school he was bullied by the TA who was also the bus escort, she used to mutter under her breath that he was stupid and swear at him, she is of course denying it but we live in a smallish town and i can see by the way that she reacts when she sees me that its true.
He is now at college in a working towards employment course but there have been many problems and he is now on medication for anxiety and depression ( so am i btw )
you have probably been down the same road as me many times and its bloody hard work but i can relate to so much that you are saying and wish i could give you some advice but i just want you to know that you are not alone, there is an army of carers out there who no one seems to give a crap about, having a good SS is half the battle.

OneWaySystemBlues · 02/03/2011 23:26

Thank you for your post bittersweet, it helps to know that I'm not the only one who feels like this. I know there are others in worse situations than me, but I think it is the relentlessness of it all and the slow loss of hope that things will change that make it so difficult. It is a lonely business and the longer I'm on this road, the less I think anyone really cares that much. We've cut down our life so much to accommodate him and I can't see the light at the end of the tunnel. Anyway, it's getting late so I'll try and sleep, but thanks again, to everyone.

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