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 would definitely consider medication. It has helped enormously in my dc's case.

Honestly Google carers centres for your area. Money offer tons of free advice and support for anyone in a caring role. As a carer you may be entitled to things you didn't know about so please have a look.

I have a friend with a severely autistic daughter who is now in sheltered accommodation (she is 22). Her daughter has the most amazing care, many activities, accommodation which suits her needs, plenty of time with her family (they live very nearby), and the kindest carers.

My friend devoted herself to her daughter while she lived at home, but is so pleased that life has moved on for the whole family.

Dearest Candles2016

You are very brave, remarkably strong, and absolutely doing the right thing fighting for the residential provision for your son. I want to emphasise, it is right both for your son and for you.

Space is so important in our lives and so often people forget that. Stress creeps up on us and when we least expect it we can snap or say something we would never believe or say normally, all because it has crept up silently.

In your case, it is not so silent, so I can only imagine the general stress you begin every day with, let alone how it ends! How can you keep the perspective you need in that situation? You can't. How can your other relationships have space in that situation? They can't. How is it healthy for you, or your son, if you are emotionally so drained that you do not have the perspective you need as a mother? It isn't.

Your son, your daughter, your husband and you, all need the space to remember that you are a family.

Also, do not feel guilty about residential. You are not giving up care or responsibility for your son. You are exercising that responsibility by making sure he is safe, cared for and in a suitable educational environment for his needs. More than that, when he comes home, feeling more positive about his own achievements and experience, he will bring that with him. Even more than that, when he comes home feeling better to a home that has managed to remember it is a family and feel more at peace, that will be EVEN better.

Keep it going. You don't lack parents cheering you on, because you are doing the right thing.

I'm so sorry I can't give you any good advice but I've read the thread and just want to give a huge cuddle and tell you to be kinder to yourself.

You are dealing with something most people never even have a inkling of. You sound like a wonderful person and all of you have been given a huge amount of stress.

I really hope you get the help you deserve and things improve for you

dear Op

i was in tears reading your post .
I send my Dc to boarding school, not for their 'challenging behaviours' but for their own special needs....one is at a high level performing arts school because frankly that is what she needs to be the best she can be, and my youngest at a highly academic school because that is what she needs.
Neither could have their particular needs met by me at home , with juggling everything else as well.
I feel guilty that i effectively send them away ...but i am trying to do the best for them and the whole family. This is what us parents do, we want the best for our children, and you OP want the best for your ds...and if that is a boarding school you should not feel guilty. You have not failed him, just as i have not failed my dds, you are actually doing an amazing thing for him in fighting for this chance, this opportunity for him to get the best education he can .

Needs are needs whatever they are ...and as parents are job is to try and meet them as best we can for our dc.

Candles - you have my heartfelt sympathy. You have done and are doing the very best you can. And are now running on empty. Is yours a LA which believes in inclusion at all costs and has no within authority residential provision and is also facing humungous budget cuts?

Residential could very well be the making of your son and is in no way a failure on your part. Some children, for absolutely the right reasons, need this. You need this.
Have the LA agreed to residential? Are they umming and aaahing?
It might be worth exploring the legal route, checking out actual costs etc. Is there a free consultation available with a firm which specialises in this kind of thing?

Just want to say how difficult this must be for you ...my sister son is autistic and he's nearly 7 he will only eat weetbix amd has only just started to talk ..he hits himself constantly in the head and it's distressing ...

. She does have outside help at the moment and he does go to a school that can cater for him but he comes home at a normal school time ....she is 49 and is exhausted he never sleeps and will not be with any other family members she dreads the school holidays because their is no break for her ...she hardly sleeps herself . So I can only imagine how hard this is for you xx

I could have written your post. We have just made the decision to go for a weekly boarding placement for our son who is 14 and severely autistic. Our family life is also utterly miserable and we probably should have done it years ago. I agree with the statement that you should be positive about the decision you have made. We have spent years struggling on and have finally come to terms with our decision as being the best thing for our ds and for us as a family and quite frankly I had made the decision in my head that if it didn't happen we would have to separate so at least we would have a break when our ds was with the other parent. I have also started to look to the future for ds and feel that preparing him for supported living as an adult is part of our responsibility to him. Keeping him at home will not do this. Please don't feel guilty.

Good grief, you sound incredible to have got this far. Your poor thing.
When your DS is settled at boarding school, I would prioritise your relationship with your DH, simply so that you are both happier and feel like you are something more than two carers living in the same house. This will benefit your DD, too.
I know it's easier said than done but you all deserve a happier life.

I can only reiterate other posters and say that you mustn't feel guilty for wanting to send your DS to boarding school. In fact, you should only feel guilty if you were to prevent him from going to the best possible school for him.

I haven't got direct experience but my DS had to be admitted to an adolescent inpatient psychiatric unit. I felt like a failure of a mother as I
couldn't keep him safe at home. But then eventually I realised that if none of the professionals could either, then what chance did I have? My DS benefited hugely from being away from home in a therapeutic environment. It was very hard to
understand or accept, but being at home isn't always the best thing for teens with significant emotional/behavioural problems.

Also, can you look into getting family therapy possibly through CAMHS. as the whole family needs support in working through this, including your DD.

I am in the Same boat as soconfused my son was admitted to a forensic psych unit for two years at 13 and he has asd. I had a long running thread on here about it but it gave us all respite.
I Don't recognise him anymore as that person. They did wonders in lots of ways.

Oh, candles you sound like you're absolutely on your knees

Can I just make it clear that you have no reason to feel guilty about your DD. You have no crystal ball. You could not predict what the dynamics of your family would turn out to be. Meantime, you're a fabulous mum because you're doing everything within your power to make it better for her.

My boys are 12 and 9. Both have ASD. DS1 also has ADHD and strong PDA traits and we've been through the mill with him. After a fight, which thankfully didn't end in tribunal, as LA conceded, we secured a day place at a specialist school. It has made a huge difference to him in many ways.

It's still not peaceful, though. He detests his younger brother, who in addition to ASD has LDs and limited language and constantly tries to control everything he says, does and eats and looks at. DS2 has learned to wind DS1 up, though and is now extremely challenging in his own right. The boys simply cannot co-exist peacefully.

We can normally more or less manage the situation on our own, but there is no slack. No room to give. We already take a boy each on Saturdays and keep them apart and entertained in a way that suits them. Keeps the peace, but not great for building family cohesion. FIL died, last week. DH wasn't all that close to him, but has still, as you would expect been a little tearful. DS1 locked into his having a go at DS2 routine, yesterday lunchtime and would not back down, saying that DS2 shouldn't exist, and so on, and DH just broke down because he couldn't take any more. It just drives home how precarious our situations are. If we could plot our emotional CPU activity, we'd be constantly running above 90%, meaning that anything else thrown at us, whether from our immediate family or outside is likely to send us into meltdown.

Don't feel guilty about seeking a residential placement, either. I think DS1 will need to board in the future. One of them will have to and I think that DS1 is he one who will gain something positive from it (and worry us less.) As I've already said, you're doing what you need to do to do the best for all your family. And you will do it because you know you have know choice and you can guarantee that the LA know that, too.

Slightly different angle, but can you if there is any support for your DD to do some 'normal' things with others of her age group? Do you local parent partnership offer anything for siblings? Mine do a little bit but it's not what we've needed though at times it might have helped. Perhaps ask at her school and ask if they can organise some support for her via school counsellor or if they can help see if there any groups that she could go to. If pressure can be removed in any area it may be a little bit of relief and help her.
At times I felt in the past like simply admitting I could no longer function - in our case things improved dramatically out of the mainstream but different set of needs.

God you are the last person who should feel guilty. I should feel guilty for finding it hard with two NT DCs.

Is it possible that part of your feelings of guilt is also sadness that you can't fix this however hard you try? I could imagine feeling that. But maybe letting him go to residential school could actually help you come to terms with that. Because he needs additional stuff that you just can't provide in a family setting because no one can.

You've been dealing with this and fighting for your son for years. It's clear what he needs - you simply need this for everyone's sake. I hope you can find a way to get through to the next stage in your lives with a better balance for all of you.

I wouldn't think twice about the meds actually. Not only will you be better able to cope, but so will he. He'll be happier, calmer less stressed and less traumatised, less in severe pain. Think of it as pain - if it was an extreme physical pain you child was in, would you think twice about painkillers?

Don't worry about the puberty thing. What use is having him go through puberty without drugs in his system if every day is a living hell for him, and for all those around him?

for you. So many wise and helpful posts from people upthread.
I have nothing to add except to say that you are doing the very best for your family. Lots of love to you my darling and many hugs.
Dx

Hi, just wanted to offer and hope, we have a son with an Autistic Spectrum Disorder a few years older than yours and five years ago we were at the same stage as you are now, we were on the very edge of destruction as a family unit, my son's behaviour was so destructive, he was at risk of permanent exclusion from school, my daughters schooling was suffering, her friendships ruined,my health was suffering, my work was suffering, my relationship with my DH was almost destroyed, we had no money, and no time for each other. Things got so bad that I couldn't take DS out on my own and DD wanted to move out of our house, she was trying to study for her GCSEs and couldn't cope at home.

DS was in mainstream school with a statement and full-time 1-1, his statement wasn't adhered to, he was being discriminated against, illegally excluded (as well as the legal exclusions), in hindsight the school really had no idea on how to manage ASD but wouldn't admit it and kept telling me that theirs was the best school for him. After a long period of time in isolation internal exclusion I was told that he was no longer welcome at the school, the following September he started at a special independent school (as a day pupil), at this point his mental health was at serious risk and it was agreed that residential was not an option at that time.

Five years on and we are a different family, my son is a different child fast approaching his GCSEs and adulthood, life for all of us is much better (not perfect by any stretch of the imagination). We did what we had to do for the sanity and wellbeing of all our family. There is hope.

Put your guilt aside, you cannot help your son if your own health is compromised, you need time and help and a residential school will give you both.