I need to talk about my utterly miserable family life

[2016Candles]

I was going to post this on the SN boards, but actually, I think it sits better here. Can't even be arsed to name change .

I dont know what I am really asking for - advice? not really - but I am very isolated and really have nobody other than my mother (who has many other things to worry about) to talk to about how awful things are.

Our family life and, I think it is fair to say, the mental and emotional health of my whole family is completely broken. The crux of it is our son, who is 11 yrs old and autistic. Life has been a constant struggle for him (and for us, because of his needs) since he was very small. He has always had extremely challenging behaviour and our lives have had to be totally focussed on meeting his needs. I won't bore on, but it has been hard - isolating (I have few friends left, very little social life), emotionally draining (understatement) and increasingly, incredibly painful (watching your baby grow up into someone who is desperately unhappy, unable to function in most social environments, violent).

At times, life has taken a very dark turn. Three years ago, I went into a very serious depression (around the time my son's second school placement broke down and I was at home all day caring for him for several months). I ended up spending some time in a psychiatric ward (voluntary, although I think if I hadn't agreed I would have been sectioned). I came out of that dark place eventually, and have been back at work for a year and coping OK.

But life feels awfully hard again lately. DS has been out of school pretty much since October. His anxiety levels are through the roof and his levels of violence are out of control. We are trying to get him a place at a residential school for September (or sooner, if the LA will agree). But that seems so far away. I am scared of what may happen to us all in the time before that. And despite the fact that we really have no other options but to send him away somewhere where they can keep him safe and meet his needs, I feel an absolute failure as a mother . The grief and guilt is immense .

We have honestly, honestly tried every bit of intervention, got every bit of professional 'help', that we could possibly get for him and for us over the years, bar putting him into care. We have had OTs and SALTs and Ed psychs and private psychs and CAMS and social workers and the police and every bloody professional out there giving DS and our family 'support'...but it has come to this.

I am sending my baby away to a boarding school .

And what happens after that? His sister (who adores him, but has been badly affected by all of this stress and difficulty in our family life) is turning from a gentle, sunny child to an anxious one (pretending she has a tummy ache to stay off school or to be able to sleep in my bed with me; crying all the time; tantrumming in a way that mimics his meltdowns). I feel like I have let her down, too, by bringing her in to this dysfunctional family.

My marriage is in tatters. DH and I use all our reserves to try to deal with DS, and to try to juggle our working lives around a child who now won't go to school. We have nothing left to give each other. I can't even imagine how our relationship will be once DS is at residential school. I dont even know who we are anymore.

We have all the other problems of normal family life - financial worries, ageing and ill parents, my sister is going through a bad break up from an abusive relationship and needs support etc. It all feels so hard.

And now I have to find the energy to fight the LA to fund a place at boarding school for my DS. It may involve expensive solicitors and a tribunal and I am just so fucking knackered with it all.

I am just so tired. I have lost a stone this months without even trying. I have no appetite. I think I am anaemic. I feel like sleeping and crying most of the time. But how can I? I have to keep going.

I am sorry if this has turned into an epic self pitying ramble.

I am nearly 40. I had no idea that my life would ever be so grindingly fucking hard.

I have no useful advice to give but I just wanted to say that I am so very sorry. This does sound exceedingly hard

I think you have done very well to hold it together thus far.

More experienced people will come along and offer better advice soon I am sure.

Lots of people send their NT dcs to boarding school! You're doing what's best for the whole family. Life sounds so hard for you on every front, so give yourself a break and don't feel bad about going down that option. Have you got help for the application?

Hi I am in exactly the same position, home with an aggressive 11 year old who is not in education. We are looking for a suitable school placement, possibly residential.

It is so hard and I sympathise with what you say eg no social life, few friends left, younger sibling in distress. I am afraid my marriage broke down due to the stress of dc's behaviour.

I don't know what to advise except I think it is a positive thing that you seem to have found somewhere where his needs will be met. Hang on in there and you might find life will settle down when he is there. If I were you i would be holding on to that and looking to rebuild your life, with more time and space, hopefully with your partner.

Thank you, both.

I keep telling myself that, Seriouslyffs - that parents pay thousands for their NT kids to go to boarding schools. But it feels like I am telling myself lies . They pay for their children to have lovely experiences in lovely schools with lots of extras. I am begging the LA to fund a place in one of only 4 schools (out of the 50 we have looked at!) that would take him .

I know I sound like a negative Nelly...sorry.

I do believe deep down that this is the best and only option for DS, and for our family.

I am feeling worse than ever today, I think, because DH has been away for work since Friday and I have been (literally) trapped indoors all weekend as DS refused to do anything other than go on his computer or watch TV. Watching what his demand avoidant behaviour does to my DD has been hard. She just wants to go out and be 'normal'. My mum was able to come over and take her to the park for a bit, and it really lifted her mood, but within an hour of being back in our house with me and DS, she was clingy and tearful and tantrummy again and saying 'I hate this life'. She is only 7 yrs old

A friend of mine started counselling recently and after recounting her story the counsellor said "yes, well I can see why you're here". The good news is, you're not exaggerating the difficulty of your life, it sounds absolutely appalling.

Do you know that you will have to fight the LA to get the place funded, or are you just expecting that that will be the case? (Apols, I don't know anything about this, but I read the post twice and I couldn't see anywhere where the LA had refused to fund the place).

It sounds as if the residential place is absolutely the best thing for your ds as well as for you. He needs specialist help and to be kept safe, just as you all need to be safe as well. It's not a question of failure (although I absolutely understand why you feel that way) but simple practicality.

Unfortunately I don't see how you can be providing much in the way of assistance to your sister or your parents. Your priority needs to be your children and yourself. I know that's difficult but it won't help anyone if you end up back in hospital because you've run yourself ragged. Are you getting any MH support at the moment? I think you need to see the GP about the weightloss and loss of appetite. There could be a physical cause which needs treating.

Sending you sympathies and supportive vibes.

Thanks, Living

Its hard, isn't it? (understatement). I am sorry about your relationship. DH and I have nearly separated a few times. Its a miracle we are still together, to be honest.

I have been holding on to 'when DS goes to residential school' for months now. I know I just need to hold on a bit longer. I can't let things fall apart now.

I am in quite a similar situation, but DS is only 7, however I am older than you and look a decade older than that. It's not the age, it's the mileage.

I'm at the point where DS has been home for a few months while we wait for a school. It's relentless.

I think in your case, the thing that leaps out at me is that you need to work on losing the guilt. You have done so well by your son. If a boarding placement is what he needs right now (and that includes the wellbeing of his family who are in this for the long haul) then that is what he needs.

All of us in this situation are on the road to this big question. What about when he has to live elsewhere? I think most of us try not to think about it because of all the feelings it invokes that you are having to face.

But you've done nothing wrong. Sorry, there is so much in your post and my reply is pretty pathetic (attention problems I have found come with the territory). But you are not alone.

tribpot - that struck a chord with me! After I had my breakdown, there was various talk of whether I could be bipolar or have some underlying mental health condition. I was under the care of a psychiatrist and psychologist for a few months after I left hospital, and I remember the psychologist saying to me 'Your life is hard. There is nothing 'wrong' with you. You're just dealing with a tremendously difficult situation'. It was a relief, in a strange way, to have someone acknowledge that.

I'm not getting any MH support currently. When I was discharged from the crisis team, I wasn't offered any further therapeutic support. I paid for private psychotherapy for a year, which was illuminating, but actually made me feel more unstable, ultimately. Bringing up lots of difficult feelings on a weekly basis just wasn't cathartic for me in the end...it was disruptive. i have to hold it together enough to function, and i was just finding myself feeling dreadful and tearful after my sessions.

Got a GP appointment in half term to get blood tests sorted for the weight loss etc, so trying to be proactive on that front!

You're right about not having the reserves to be supporting my sister. Its tough, though. My mum hasn't been well and has had a rough ride in life over the past few years, and I worry that the stress of my sisters situation falls to her if I dont intervene.

Sorry to waffle on. It helps to write it all down x

Yes it is easy to think you are alone when everyone you know seems to have children who just go to school every day without incident.

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I worked in a residential special school many many years ago I loved it and now I have dcs myself I realise what a great place it was.
And I know and judge lots of people who send their dcs away to not have the hassle of parenting them. That's not you and this placement could give you all the space you need to enjoy each other.
What stage are you at with the school? How's your MH these days? Can you separate the exhaustion and ground downess from your health?
to go with your flowers. Even if you're still firefighting feel a bit held by us here.

x post about your MH
Is there anything you can do for yourself today? Can you take DS somewhere blowy if he's off school today? Hot bath for you if you're alone or loud music you can't normally play.

You are not a failure as a mother you are doing everything possible to meet the needs of your children under exceptional circumstances.
Do you have a social worker and are your LA providing you with any respite in the meantime? You need support now.

When it comes down to it your primary loyalties are to your own family unit of your DH, DS and DD.

I was also going to ask what stage you are at with regards to getting DS his residential place. What have the LEA told you?.

Do you get any support as a family from Social Services?. Did they ever give your family respite?.

Did he have a Statement of special needs or an EHCP in place when he was attending school?.

Sorry for all the questions.

I just wanted to post and send love to you. I don't know you but it sounds incredibly hard and I feel almost like crying just reading it.

It's hard enough to keep the family's head above water and the marriage intact where the children are NT. Goodness knows what a struggle you must have.

I remember hearing this radio programme ages ago - Letting Go of James, www.bbc.co.uk/programmes/b006r090 about a family with an autistic teen son, James, and the process of their decision to send him to a residential placement. It sounds like you are going through many of the same emotions. It was a very powerful documentary - I wonder if the BBC could let you hear it if you email them.

xx

I don't have experience of your situation but I do know how it feels to feel completely and utterly overwhelmed. I feel for you.

You are not being a rubbish mother at all, your are doing the best you can for your son under extreme circumstances, and if a place at a residential school is best for him then it is good parenting to allow him to go.

All the best, hang on in there

www.bbc.co.uk/programmes/b0128hsj/broadcasts

perhaps this link is better (click on Letting Go Of James)

I am sorry you are going through this.

I wish I could offer some amazing advice, but there isn't a lot to say. I am all too familiar with the complete and utter exhaustion, and wrung-out, end of tether, no more to give feelings.

My dc are all autistic, with varying levels of need, and ensuring that they are all ok, and sorted out, leaves me done in.

I recognise the thought of not even knowing who you are anymore - I haven't had time to be me since I had children, 12 years ago. My H and I have not a been a proper couple for years. We have been coping, centred around the varying needs of the dc. I too get tremendous guilt when my younger 2 (much higher functioning) want to do something which we cannot manage due to their sisters needs. Everything revolves around her being able to cope. And even then that is not enough, and she has recently begun being physical with them both. Not to mention the constant high anxiety from her which leaves us all on edge, and borders on extreme control - demanding where someone is going/what they are doing if they so much as shift their position on the sofa. Not answering is not an option (leads to screaming and meltdown) but I am at the same time aware that it is not right they have to answer to (and explain their actions) someone for everything they want to do.

You are doing he best you can, which is all anyone can do. I wish I could be more help.

Sounds like you have done everything you can for your son. Don't look at a residential school as giving up, think of it as a way of helping him move forward. They will be experts at looking after children with autism. He may find it more relaxing as won't be going to and from school all the time.

Meanwhile you will be able to reserve your energy to have special times with him at weekends and holidays.

I think most people, when their babies are born, swear to do their very best for them. If you send your son to a boarding school, where he will be cared for by specialist staff who have the advantage of time off from work when they can unwind, unlike you, then you are doing the best for him. If you keep your marriage together, you're doing the best for him (though I know the pressure must be tremendous.) If you give your daughter respite from her brother then you're doing the best for her.

It sounds incredibly hard but I think there is no other option. This is the best thing that could happen and I hope the LEA fund it without making you fight for it.

Candles honestly boarding school could be a life saver for all of you,it may just click for your DS and he might become a much happier person there,it will also provide some much needed breathing space for you,your husband and your DD.

I know it must feel like an eternity away but what I'd do is focus on what positives this could bring for all of you this year.

We have 5DC and 2 of our DC are asd and our youngest also has physical disabilitys as well,I've been seriously ill and disabled for 7 years now,it happened within a year of having our youngest.I know some of what your going through,I hope they pull they're fingers out and get everything sorted as quickly as possible for all of your family.

I don't have an practical advice to give you I'm afraid but I just want to say I hear you, and if I could reach through the screen and give you a hug and a stiff G&T I would. You sound utterly, utterly ground down and I know no-one can take away your problems but I really hope you get some support and some respite soon x

You're in an incredibly difficult situation where there is no solution that feels 100% right. So you have to go for the one that is nearest to this. And protecting the happiness and future of your NT daughter, yourself, your husband, with luck your marriage in return for your son attending a specialist residential school sounds like the best decision. You are not abandoning him.

Bear in mind that he will be hypersensitive to how low you are and how much your stress is caused by him. It could be a huge relief to him too to be outside of that family dynamic in more neutral surroundings where his caregivers aren't so fiercely and emotionally attached to him.

FWIW a friend was in a similar situation a few years ago: skeletal, living on nerves, family life and marriage in tatters because of her daughter's severely psychotic behaviour. No one's fault. The daughter had brain damage. She clung on way too long in the false belief that keeping the family together was the thing that mattered most. It wasn't. She almost died. In the end, they chose a similar route to you. Everyone is happier. Including the daughter. Her marriage is back on track, her health is restored and best of all, her relationship with her daughter has improved.

I think we're put under immense pressure to believe that one-size family life fits all. It doesn't. If your family dynamic works best when you are not all under the same roof 24/7 then that is fine. It doesn't mean you love less, or that you're less capable, or that you've failed in any way. Your family circumstances are not the same as everyone else's and so the choices you need to make won't match the majority of the world's. So what? It's right for your family.

Allow yourself to think positively about the decision you have made and share the positivity with everyone in the family, including both your children. They'll pick up on the emotional value you attach to this decision.

And then allow yourself to feel pride in the tough decision, not guilt. Take a breather and have some fun with your daughter and your husband.

It sounds hard, but never consider yourself a failure. The amount of effort you've put into raising this child is astounding, and you do it all for love, not for approval or vanity.

You need your energy, as you said, to focus on the other aspects of your life. Perhaps boardings school will be good for him, and you simply need some space to work on your individual needs.

Sending you my love!

Just wanted to say that you really moved me with your post. It just sounds so incredibly difficult and exhausting, I think the residential school will give you some respite, and god knows after 11 years you have earned it. Don't feel guilty for wanting to stop things going into free fall for the rest of your family. That is doing your son no favours at all. It sounds like he needs a lot of help and no one or even two people can carry that burden all alone forever. You also need to stop carrying this guilt for your dd too. Just remember every time you have that negative thought, you are doing your best to get it sorted ASAP and give her a normal childhood. There is nothing more that you can do. It is not your fault, it is your very unfortunate circumstance that you have all this to deal with. Agree that your mum needs to take the burden of your sister, you really have enough on your plate. September is 7 months away. You have already done 20 times as long as that with your DS. You need to go easy on yourself, accept that things really are shit for another half of a year but after that there is a light at the end of your very long tunnel. And don't feel guilty that the light involves residential care, it's there for a reason.

Thanks again, all. Just reading through your replies.

Attila - just to answer your questions...

We have never had any respite and, in fact, our LA doesn't offer respite at all anymore other than emergency foster care, which we have been repeatedly told isn't appropriate for our DS. DS had three hours a week at a play scheme via Shortbreaks, but stopped attending last summer. We physically couldn't get him there any more, and although they offered to send a 1:1 support worker to our house instead, he wouldn't engage with that.

DS does have a Statement, has had it since reception year and it has quite a high level of support written into it (placement at an ASC provision within a mainstream school, plus 1:1 support 32.5 hours a week + private OT written in). It was due to be transferred to EHCP by now, but that has gone on a back burner. His Statement is reviewed twice a year, so at least its up to date.

Re: school place - we have told the LA months in advance that we were looking at a residential school place. It was minuted at a CAF meeting in October, we have verbally and in writing told the LA this is what we were looking at etc. But the official letter has only just gone in (Friday). They have remained tight lipped about their views so far, but DS's current school are supportive of a residential place and have collated all our professional reports for the LA and residential school and written a very strong supportive 'school view' (really, really well done - I just got a copy - they have gone above and beyond, to be fair) and the Head of his provision thinks it won't go to tribunal and that the LA have run out of other options. I am still incredibly nervous, and distrustful, though, as we have had to fight for everything for DS all these years - it was never given to us.