to feel utterly trapped?

@LadyMacbethWasFierce sending you SOOOO much love ❤️

I honestly think this too. I feel almost unhinged for saying this. But I do agree with @Jamesblonde2

it’s not like having a dog or cat you had to rehome and just move on from.

If you want to talk about taking offense I don't believe anyone should treat a pet this way. People who rent shouldn't get pets when they are going to find it hard to find subsequent rentals that will take the pet, leading to rehoming. People shouldn't buy and sell horses as if they were items of clothing. People whose pets have behavioural issues, medical conditions or whose pets are old shouldn't be doing anything other than having them PTS if they can't look after them. Pets are part of the family IMO. So yeh your comments about "rehoming pets and moving on from it" as if they don't matter is pretty offensive IMO.

I'm not talking about pushing the child away. I'm talking about finding a way to place her somewhere where she can get the help she needs and deserves. So she can have better quality if life. Or if not an improvement, at least it's not worse than her life now. I'm talking about two parents who are at breaking point getting their lives back so they can be a family still, albeit to a child that doesn't live with them.

Was she born prematurely OP?

Hands up I couldn’t cope.

I mean this sincerely, I would be asking to place her in residential care and visit her. Tell social services you can’t cope.

Everyone will jump on me. But external support won’t cut it OP and as you say she will only get worse.

It’s not normal to want to cope with that.

Not really. @Mingspingpongball . The OP sounds like she wants out. The husband sounds like he wants out too. It's their elephant in the room. Neither if them wants this. They both miss their marriage before, their happy life and they're losing touch with their peers, a gulf that will only widen as those other kids grow up and their DD remains in need of 24/7 care and displaying antisocial behaviour. If they could rewind the clock and not have her, I think they would. For DDs sake too, she's suffering. That's what I took from the opening post.

Residential care is the way out of this current situation, for all of them. It's not mean, even the kid isn't happy right now. It might take until the kid is 10 if they start fighting now. They've currently got zero help so it'll take a while to even find out about where to start. Some good suggestions on this thread. Better to start now than waiting until the kid is 10 and they're both depressed, husband has fucked off as they inevitably do, and then find DD ages out of that system and is 20 something, still living at home with OP, trashing the place and OPs nerves etc.

By the way I don't mean out of her life or that she doesn't love DD. Just wanting a normal life, or at least a life she can cope with and to not lose her marriage over this. I'm not saying she'd never visit DD or want a say in where she lives etc. I don't think she wants to turn her over to the state which is why I haven't suggested it.

Brilliant advice x

@Whyarepeoplesuchwankers
But you are overlooking that the OP may not WANT their child in care. Just because things didn’t go as she naturally hoped and expected it doesn’t mean she wants her child out of her home and her life.
My life with my DD is very tough (for different but similar reasons). She’s the light of my life and I dread the day I die or become incapacitated so I can’t care for her and be with her. That day will come. But I’m not planning on trying to create a life that’s as if she were never born- and I don’t get the impression (sad, tired and disillusioned as she may be) that the OP wants that either… because I think she’d have said as much by now.
I understand how someone from the outside looking in thinks life could just be “normal” if only the child wasn’t around (either as much or at all). But that’s effectively acting as if motherhood only really pertains) I mean the emotional part) if your child is “normal “ and doing typical things.
The parents I’ve met through DD’s school are as bonded to their children as I am with DD. Doesn’t make it less hard or heartbreaking at times but it’s not like having a dog or cat you had to rehome and just move on from.
And honestly, despite whatever a local authority can or can’t do, it’s actually pretty offensive (and I don’t take offence easily) to suggest it should be an inevitable option that a child- in this case undiagnosed and unaided by professionals or carers - should be just pushed away out of sight essentially.
But assuming it’s largely not having lived as the parent of a disabled child (to this level), I’ll leave you to it.

I know I will be slated for this. But you are probably grieving not having a child within the normal parameters. I would be desperate to have a second child in your shoes to experience normal parenthood? I know it would be a concern the impact on child 1 and child 2 but it would be what I would personally want to have something in my life I had been really yearning for. It would give me a reason to get up and keep going on tough days.

Well tbh I meant that I would stick at it, one way or another.

You are grieving OP.

Make sure you get all the benefits you are entitled to. My friend gets the maximum for her son which is near one thousand a month and he’s in mainstream school.

Banardoes offer an excellent range of support, including counselling for parents.

Get in touch with every support group you can, as a way to find out what support/ legal advice etc you can get, to make sure you get the right support for your DD. There are online and Facebook group ones if in person is too depressing.

It’s outrageous that parents in your situation need to fight for support instead of support flowing to you.

@Mingspingpongball

It will take a long long time to fight for. There are special schools (school age is 4yrs old) and some are residential settings. I don't know what ages for. It won't be long before this violent child is beating up at least her mother even if her father is strung enough to restrain her. She sounds like she needs 2 to 1 carers, which she's currently not getting. IMO she should be in residential care ASAP. If she was turned over to the state she'd either be in specialist trained foster care or in some type of residential settings, you can bet your life she'd be rejected as unsuitable to live there from any regular social services run children's home. They can sort something out if they wanted to, they'd just rather dump it all on the parents. If she's capable of progressing then fine get her all the help to progress then, currently they're doing nothing. I know there's no money, I also know they're not allowed to use that as an excuse to shirk their legal duties.

I'm so sorry it's so hard for you... If I knew you, I'd give you a very big hug. My son is autistic and I know all too well this sense of dread. It's like a constant shadow over me. So many things in the world around us is like an attack on his senses. I want nothing more for him to be happy. And I want to be happy. Not all the time but sometimes would be nice. I hope you get some support, something to help you manage everything and find some happiness along the way.

@Whyarepeoplesuchwankers
As above - where do you imagine there is residential care for a 3 year old?
An 18 year old man who is physically capable of destroying a house and seriously harming himself or others doesn’t just get residential care..
You know when people go on about the cost of social care and the pot being empty… it’s because it’s almost non-existent and as the OP’s child hasn’t been diagnosed beyond global development delay and could progress immensely with the input of school and SALTs etc. there is no way she’d be placed so young.

@Designless
I know you mean well.. but there IS NO residential care for 3 year olds. Do you know what you are even suggesting really?

Sorry loads of typos - hope it makes sense

Hi OP,
Im so very sorry to hear about life is for you.
Im in the process of putting my (severely disabled) DD to bed, so I may drop back if I don’t get to say everything.
I’ll start by saying that my first DD was stillborn at full term, so I knew profound grief and loss before I then (accidentally after failed IVF and giving up) becoming pregnant with DD.
We knew from the 29 week scan some physical things were wrong and as the weeks of pregnancy went by it appeared sometimes as if she’d just have clubfoot and then progressively it became obvious (at 28 weeks) she probably had other issues.

Nothing prepared me for meeting her - she was absolutely beautiful and exotic looking but absolutely incapable of moving anything.
I decided I’d take one day at a time.

Ive managed that mostly throughout her 8 years but I have plenty of wobbles and am in a low period I can’t shake at the moment.

She is nonverbal, can’t stand or walk or sit herself up, can’t dress, is doubly incontinent, seems very very smart but cannot communicate much at all, and worst of all, can’t eat (PEG fed).

She has self-harm behaviours but because she can’t get around without her wheelchair (she’s certainly moved on from not being able to move to being noisy, fun, funny, loves music, very noisy etc.)

Everything changed for her and me when she went to an absolutely amazing nursery where most of the children were “normal” and they were amazing with interacting and playing with the disabled children. She changed into a calmer, more relaxed child (she was always happy but this had the food enabling relaxation).

She attends a special school since she turned 4 and loves it - goes off with her PA and it gives her social contact and activities I can’t do (especially after lack of sleep as she doesn’t sleep much).

Contact your local authority and tell them you a) urgently need a carer’s assessment. That will trigger them looking at the social services care for your daughter if she doesn’t already have a social worker.
Tell them you are struggling and force them to look at your needs.

Don’t expect respite - it just doesn’t happen. Not from the council anyway.

Do seek out charities and groups with similar children because local knowledge is everything.

Call your local authority and say you need the EHCP and you are pushing for her to start school (specialist).

I know you are fighting but if you imagine special school in particular/school in general will change things it might give you some momentum when you feel it’s waning.

Before I go for now - have you looked at communication methods like PECs or AAC talking devices that might say things for her that she cannot express but she can “rely on” when her body doesn’t work to let her communicate? I highly recommend trying something like this.

Has she got a community paediatric consultant? If so they need to push for diagnosis and support. If you don’t have one ask your GP for an urgent referral and specify you are at breaking point .

I hear all your feelings OP. I live and lived them. Life is cruel sometimes but it can also be full of tiny glorious joy when things go well.

She'd be bloody mad to have another child without ruling out that the current one has anything that's genetic. Imagine her current scenario doubled! Or finally getting one child into residential care then winding up back in the exact same place with a second child a few years on. I know she wants another kid but my comment still stands.

Indeed, having a ND child is a whole different ballgame and unpredictable territory. You just have to accept it and roll with it, seek as much support and intervention you can. We have to do the best we can, they need us, unconditional love, plus with the right guidance every little win is the most wonderful feeling. Xx

Hi OP. I feel so sad for what you have described. I hope you will be able to get some respite - there is just not enough for special needs families. But I’d echo all the advice given above about getting a full team onside to advocate for a suitable educational setting, respite care, and carers who can give you a break.

I know you mention you don’t feel able to have another child — I know a number of parents in a similar situation to yours and to be honest it’s the only thing that has brought joy back into their lives, having a second or subsequent children. As adults and parents we can put all our needs aside but not those of our children, so life has to change and accommodate a new baby even if managing that alongside a child with multiple needs makes life even more challenging in some respects. It does mean you may get to experience the joy that others do. But completely understand this decision is different for everyone.

Exactly, if OP finds it hard, why wouldn't anyone else?

In my opinion it would be ok to explore options to place her in residential care. This is absolutely what I would do. I appreciate it isn't possible for everyone I just want to say it in case it would be possible for you.

My biggest fear would be my DH leaving me to it at some point. It’s very common for men to up and off leaving their ND child with mum to cope alone. I don’t know the answer to your problems but I really feel for you. It sounds all consuming.

Your feelings are entirely understandable. I taught children with issues like these and loved doing it, but it was always my heartfelt relief that I did not have to parent them. My heart goes out to you all as you are bearing a burden few will experience or understand.

Help is not always easily accessible. It is out there though, and if you can somehow manage to get some respite care in place it may give you both a breathing space to see ways forward. You may be lucky and find a respite situation which can be expanded from a single hour play in your own home to overnight stays once a relationship of sorts has been formed. Such relationships can be possible..there are some wonderful carers out there. It sometimes takes time to find the right Do keep trying to find the right ones.

More immediately, the nervous system regulation suggestions Endofyear has mentioned, are really pertinent and once in place will help your child feel more comfortable. It may dampen down some of her reactive behaviours quite quickly. Weighted clothing, blankets, hats, socks, etc are not so expensive.. it may be possible to get a grant towards them. I’m sorry I’m out of this loop so don’t know what benefits are available. I do know you may have to find out for yourself or persuade your GP to make an Occupational Therapy referral.

Does your child have a nesting area to crawl into and hide when sensory overwhelm occurs eg a table with a blanket over it, or one of those indoor toddler tents furnished with sensory materials you know soothe her?

Crucially I believe diet and possibly supplementation would make some difference also. It costs, but researching then consulting Functional Medicine practitioners with experience in Autism could help you all hugely. They could put you in touch with appropriate Nutritional Therapists who are experienced in helping parents of children like yours modify their diets. It seems impossible, but I have seen it happen. Finding the right FM help and implementing their regime takes persistence and patience .. nothing is easy, but positive changes can and do occur.

I wish you every blessing and success for what that’s worth.

OP, as everyone has said, apply now for the ehcp - she clearly meets threshold and it would be unlawful for your LA to refuse to assess. What are your local portage team doing?? What area are you in? If you were near me, (London) as a mainstream SENCO I'd be happy to meet with you and go through options and support networks.