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.

My friend's daughter has been in residential care since she was 11. The difference in her is astounding. She's calm, she's happy and does lots of things that she enjoys. The routine is fantastic and she's like a different child. This was the right decision for her.

Also, is your boy on any medication for his anxiety? That can help.

You really don't necessarily need expensive solicitors for a tribunal, but you do need advice from people who know what they're doing. I'd strongly recommend calling the SOS SEN helpline on 0208 538 3731. There are a number of things they can probably help with besides a tribunal.

One of the most urgent issues seems to me that your child is out of school. Your local authority has a duty to ensure that he receives full time education and provision for his special educational needs, and therefore if they're not doing something urgently to remedy this they're acting unlawfully. It's not good enough to say you will have to wait till September. It is likely that you will need to threaten judicial review, and I understand that SOS SEN can help with doing the necessary letter before claim setting out that the LA is acting unlawfully and that if they don't remedy it they will be taken to court. If you had to go to court, it would be in your son's name and he would get legal aid. But the likelihood is that the threat would make your LA move anyway.

Has your LA done a full care assessment of your son and a carer's assessment for you? If so, have they prepared a detailed care plan? If not, I suggest you ask for this immediately: again, your son is entitled to the care plan under the Children Act 1989. If they don't do it they would again be acting unlawfully and action could be taken to enforce it. I would have thought, given your circumstances, they should as a minimum be offering respite care. I would suggest that you push for it anyway, not least because, if they are paying out a lot for respite care, they may be more receptive to paying for a residential school place which will in effect provide that care as part of the fees.

I'm having a good old cathartic cry now reading all of your lovely, thoughtful, hopeful messages.

notagiraffe - you started the tears .

Thank you, all. Thank you very, very much. I realise now, sitting here, that guilt is a huge part of why I feel so bad. I have felt like nothing we do is right for a very, very long time. Its good to acknowledge that x

I agree with the person who said look upon the residential school as a way forward. Because home life as it is at the moment isn't happy for anybody. Could you see your GP and ask for intervention to speed things up with the school. Sorry if you've already tried this. None of this is your fault and you are facing enormous difficulties and stress.

I am sorry about your situation. In regards to the weight loss, you need to find out the cause by going to the G.P. You could ask your G.P. about Fortisip drinks (www.fortisipdrink.co.uk/). My father had them on prescription for malabsorption, my mother however, used them (bought from the chemists) to deal with the stress of what happened with my father. (She lost her appetite and used to say she just couldn't swallow any food. Dramatic weight loss.).

There is no need to feel guilt. (Easier said than done.) You need to look after yourself in order to be able to look after your family.

I want to give you a massive hug. I like that you realise that there is nothing 'wrong' with you. It's really really hard to deal with the stuff you've got going on!

Isn't it an amazing feeling when you feel connected & strong & things are going well though? I hope you feel proud of yourself during those times because you deserve to pat yourself on the back sometimes.

It could be a different scenario altogether. I know families that have broken down and their (AS) children taken into care because everything fell apart. Look how you (and still strive to) do the very best for your family.

Residential care will be perfect for him and of course there's no cure, but the approaches & therapies they will be involved in will be so beneficial for him. They can use the techniques almost 24/7 to get the best out of him and he WILL learn. You don't have the time to devote to this, they do. It's the absolute best for him & the rest of your family.

Good luck x

Is there a Carers Centre where you live? They may be able to offer some support.

Guilt is truly a useless emotion.

Am horrified to read about the complete lack of respite because it is not offered in your area. Does your MP know about your family's circumstances, I would get this person involved if he/she is not already particularly if any sort of assessment package has never been set up either. After all you are one of their constituents.

IPSEA www.ipsea.org.uk are also worth contacting as well. The more info you can arm yourselves with the better, knowledge after all is power!!.

Gruntledone - thank you for your advice. I do need to contact SOS:SEN or similar, I know. There was a time when I was shit hot on the law and our rights and spent hours every day constructing brilliant arguments in letters to the LA and others to get what we needed for DS (his Statement, his school place, certain therapies etc). i seem to have massively run out of steam now, though...I know I need to try to muster up a bit more energy at this crucial stage to make sure we are informed and empowered in this final push.

I did make a couple of calls to specialist solicitors and got a bit of free advice. But DS wasn't refusing school at that time, so its a good reminder that being out of school is another argument for needing them to consider residential school urgently. Thank you. x

can't remember who asked, but no - we have never had a social worker. No assessment has ever been carried out. There is a social worker attached to our CAF who did some safety planning with me (keeping DD safe when DS has a meltdown, basically), but she said we do not meet thresholds for children's social care. Paramedics and police have referred us (with our knowledge/consent) to SS before, too, as we have had to call out the police on occasion for DS's violence against his father during meltdowns, and because he has a Merlin (he absconds sometimes and police are called). Each time, the MASH team refer to the CAF team ie. non-statutory, no allocated social worker. I have oven up now, to be honest. They know what he is like and the strain our family is under, but t seems I would have to twist the truth to make out DS poses a serious danger to his younger sister (he doesn't) in order to trigger that level of intervention, and I just dont want to do that .

I think you feel overwhelmed by the lack of "knowing" - is a place being offered will DD life improve will your marriage survive etc.

Take a step back - look how far you've come and get some advise -

You are in nomads land and feel you have no control on the outcome

I really feel for you and any parent in your situation - all you want is that bit of help and support and fighting for it requires energy which you don't have

The government should be ashamed people have to live like this in this day and age!!

My cousin who's autistic loved his residential school and low loves his supportive housing.

Please don't feel guilty for sending him away nor guilty for wanting the relief. It could be the making of him.

Re: medication

I have always been loathe to go down that route while he is so young and before he has gone through puberty, but I have just had a conversation with his teacher and she also enquired about whether e should see our GP and revisit the idea of anti-anxiety meds....

Mixed feelings, but if it could take the edge off his anxiety even a few percent, I would do it in a flash. He is just unable to make any sort of sound decisions at the moment, its as if his anxiety levels have frozen him into fight/flight mode permanently. All he can decide is 'I'm not doing that/I dont want to'

There are organisations that should be able to provide you with practical and legal advice and support.

National Autistic Society www.autism.org.uk

Coram Legal www.childrenslegalcentre.com

IPSEA www.childrenslegalcentre.com

SOSSEN www.sossen.org.uk/what_we_do.php

Lots of information on the website but the helplines will be able to give specific advice. If they are almost impossible to get through (i.e. Coram and Ipsea) you can book a call back.

Does the residential school take year outside of normal transition times and throughout the year? Does it take DC below secondary age? If so, you don't need to try and survive until September.

Provision in his statement is not being delivered and he is due for transition this academic year because he is in year 6.

DS1 is out of school again (HF ASD diagnosis) and his provision is also not being delivered and he has also not been transferred to ECHP because he is out of school.

Yes, Sally - that is SO very true. The uncertainty is very tough to live with. I feel completely out of control and I think we all do within our family. Nobody knows day to day what DS's moods will be (not even he does)...what we will or won't be able to do as a result of that...and then the longer term thing of 'will he get a school place? will be be OK? Am I fucking up my DD? Will she suddenly become really difficult to manage, too?. Its exhausting.

Oh Candles

You sound absolutely on your knees and no wonder. There's a saying from a mum of a child with SEN - I am willing to sacrifice much for my child, but I cannot be the sacrifice. It sounds like all of you desperately need a break, do you get any respite care? Is your GP helping you with your stress and tiredness?

It must be so hard to think of ds being away at school. But you and he may find he feels calmer and finds life easier in a very structured 24 hour routine, they'll be able to control his environment for him to an extent that's so difficult to replicate in a family home no matter how exceptional a mum you are, and you may find you then get to enjoy the nice parts of being his mum with visits and cards and phone calls during term instead of the struggle to help him cope as well as the time for the rest of the family to recover.

I am so sorry OP that you are having to go through this fight. I wish I had some advice I could offer; truthfully I am just in awe that you are still standing. Please, please don't feel any guilt about sending your son to a specialist boarding school, it's the absolute best thing you can do for him. He will be supported and nurtured, crucially (as someone said upthread) by people who will get a break.

You need to do this for yourself, your family. Your son will be happier, your daughter will be happier and you and your DH will have a chance to find yourselves and each other again. I really hope it works out for you

ps: on anti-anxiety meds, it would be worth talking to your doctor about it. They may give him something gentle like a beta blocker, which seem to have been safely tolerated by people for a very long time. My friend was under severe pressure juggling a demanding course, family issues and childcare and her GP prescribed them. They have made such a huge difference - they just block the permanent fight or flight mode you're describing, meaning that she can think and do.

Please, please be kinder to yourself. You have absolutely tried your best for your son. I was a Special Needs teacher up until recently, working with pupils who could often be violent/extremely volatile. I was frequently on the receiving end, and after 14 years I finally handed in my notice as I was heading for a breakdown.

The difference is, I had a team of 5 support workers, ready to move other pupils/furniture/shield me if necessary, and give me a hug after. I got to go home at the end of the day to my sanctuary. I loved my job (and my pupils), but can only imagine how tough it can be as a parent.

If your son gets a place in residential school, he will be supported by a large team of staff who choose to work there, and are on the whole committed to working together to make sure your son is as happy as possible. His needs will be assessed and staff will be following a care plan for him using the same strategies.

They're on a rota, so not having to do it 24/7 like you. They will have support/debriefings, because it is acknowledged as being a very tough job even when you're part of a team. You're trying to do the job of a whole team, with no respite/support. You've done so well, but now you need to protect the rest of your family unit whilst giving your son the chance to get the specialist input/environment he needs.

My nephew on my ex husband's side is autistic. He was given Prozac for his anxiety at the same age, and yes, it really did help, to the point where he could sit and have a meal in a restaurant. It was explained to his mum that imagine how anxious she is when she has to fight for him. Then treble that anxiety and that would still not be near what he was experiencing.

We have a school like this near us and it is amazing. A friend's foster daughter was fortunate enough to obtain a place. I say "fortunate" advisedly because it has been life changing for the DC and foster family. Please don't add to your woes with guilt. You are doing your best.

I feel for you, I too have fought the LA to put ds into an independent specialist school.The fight nearly killed me but I'd do it again for ds to get the incredible support that he got from his school. Really life at home improved immeasurably once he was in a school that could meet his needs. We didn't go for residential as we had a school close enough for him to be a day pupil.
Ds is 21 now and in college and unrecognisable from the child described as having extreme challenging behaviour (every professional entering our home used to duck as they walked in to avoid the missiles he'd throw with breathtaking accuracy) That's not to say I don't sometimes feel stressed and anxious and frustrated because every day is a groundhog day here but it's bearable. Dd has ASD too and has changed from a sunny little girl into an extremely anxious 12 year old probably because of secondary schooland puberty tbh.

Candles - for you.

It all sounds so desperately sad and difficult.

I have a friend in a similar situation, though her ds is older now. She had to fight every step of the way for a residential place for him and when he hit puberty his behaviour became much worse and he was violent, so only a few schools would take him. He has settled in well to his school now, and enjoys it. But it was a very long-drawn-out process as the council wanted to avoid spending the money on him.

His behaviour was having a negative effect on his little sister, who was scared of him, so she has blossomed since he ash been in school.

It is helping him with life skills too. Think of it as a positive for your son: you're doing the best for him.

has, not ash

Candles you sound fantastic. Worn out, ground down and on your knees, but fantastic nonetheless.

Everyone has given support and some great advice and I hope that you can get some help, too. I hope your DS gets his placement - it could be the making of you all. It will give you, DH & DD time to recover and rebuild and your son will get 24/7 professional help and care.

Nothing useful to add but I wanted to handhold and support you from afar.

dear OP

I really hope that he starts to thrive at this school

how can a depressed mum, an anxious sister and a worried Dad meet his needs?

have you thought that maybe things will improve when he goes to school? I think you are doing the right think, really and I hope this is a positive step for everyone

as everyone said, he will pick up on this- and it will exacerbate things

GOOD LUCK TO YOU ALL

And def speak with other people who have used these school and seen a positive change

I am so pleased you have a solution is sight, stop beating yourself up