to feel utterly trapped?

[Basikelly]

DH and I are both 32. We have a three year old DD who has significant global developmental delay (we feel there are more diagnoses to come). I won't go into too many details in case situations I mention are outing, but I feel totally trapped and that my life is over. I suspect that DH feels the same way. We don't talk about this elephant in the room, although the tension between us is very clearly a reaction to this.

Every day is dictated by DD and her needs, which are increasingly difficult. The joy of having a young child is altogether absent.

Friends who have DC the same age are forever taking them to lovely activities and events, such as seeing things at the local cinema, dancing classes, swimming - even just playing games together.

DD can do none of these things. She'll scream if there are loud noises, behave aggressively to other children, run away from activities - exhausting meltdowns and tantrums. Horrible for her, horrible for me, horrible for everyone around us. I can't even take her to the supermarket without chaos ensuing and leaving me feeling really frustrated and, frankly, resentful. It will only worsen as she grows too - thinking about having to meet her physical needs and also how her increasing strength with impact everything.

DH and I had very pleasant childhoods, filled with fun. I remember feeling very grown-up when my mother took me to see The Nutcracker when I was about five or six years old, for example. I had music lessons and loved to write stories. DH speaks in fondness of visiting his uncle's book shop every Saturday. He tells a lovely story about coming home with Fungus the Bogeyman and his mum enjoyed it more than he did.

I feel sad writing this because it's everything that we thought our child's life would be, but it never will (we planned on having two children, but we can't do that now). We're more facilitators of trying to stabilise her mood than anything else. Grandparents live hours away from us and we wouldn't impose looking after DD on them. They've tried babysitting on the odd occasion, but it's not worked out.

I wake up in the night with anxiety and greet each morning with a sense of dread. The hard thing is that this is 24/7 - it's not like a crappy job that you can go home from.

The worst aspect of all of this is that DD is very unhappy. Her default emotions are fear and frustration. Apart from sugary treat foods, I can honestly say that nothing seems to make her happy. Some things, such as one particular teddy, seem to offer her comfort, but it's not happiness.

I used to find comfort in DH and my cat, but DH is now emotionally as destroyed as me and I had to sadly re-home my elderly cat for his own safety.

I don't know what the AIBU is, or even why I'm posting this. Pointless really!

First of all, make sure you're getting all benefits and support you are eligible for e.g. DLA, SS disability assessment, carers assessment etc.

Look at ways to make life easier in general to help lower stress levels. Meal planning with a slow cooker taking a lot of the load has been great for me. And a robot floor cleaner.

See if there's a local Facebook parent carer group. These are often brilliant sources of support and ideas. There might be more services than you realise.

As you have an oh I would suggest making sure you take turns to let the other parent go out regularly for a break.

My situation is a bit different but I'm a single parent of two autistic children. One has a lot of behavioural issues. One has awful sleep. I find that normal social media makes me feel miserable, as its too easy to company. But carer type groups have been my lifeline.

Have you not read the way she reacts around other people? She is never going to cope with school.

In a sense you are grieving. Grieving the loss of the life you thought you were going to live. This wasn’t the life you thought being a parent would bring and it’s obviously a great cause of sadness that you cannot do the things you’ve other parents getting simple joy from. Assessment will hopefully bring the many answers you so desperately need and even without that, it seems clear she would never cope in a school environment with her fear of her surroundings and inability to cope around other people. It may be worth looking into support groups again but with a different perspective if that’s at all possible as a means to try and find strategies to help until you get a proper assessment. I feel so very much for you as you sound so down x

I am so sorry. It is understandable to grieve the child you thought you’d have. It all sounds relentless and hard x

I always recommend these people on here: Empowering Families of Children with SEND | SEND Advocacy It's so worth using their webinars and resources to walk you through the EHCP process, but I would really recommend booking a 1:1 appointment so that you can get to grips with what is needed. They have lived as well as professional experience.

FYI, I read the other day about a new film out called If I Had Legs I'd Kick You (2026).

My only advice is for you and DH to hang on there until DD goes to the residential care she's inevitably going to need. I would raise this with him. Not being mean but you know how men are - eventually he'll put his own health and wellbeing first and leave you both, if he thinks there's no way out. Let him know you're ok with her going into residential care and start looking into how to fight for that, together. As horrible as it sounds I don't think either of you should have solely separate therapy, that's going to lead to one of you jumping ship, because what's best for both of you individually is not to be DD primary carer. Have marriage therapy to figure out how best to support each other and stay together, if you want this marriage to last. If you have solo therapy do it alongside the joint one. DD life honestly sounds shite, there's no need for you and DH to lose yourselves too. She'd probably be happier in residential care where they can keep her environment stable, her care timetabled and carers consistent, and she doesn't have to go somewhere with adults every time they need to go somewhere. She sounds really distressed. It won't be too long before she's beating you up because from her perspective she's probably fighting for her life, when everything feels like a threat to her equilibrium. Focus on saving your marriage and getting DD the care she needs.

i became aware of Mumsnet when a poster called Riven was posting about the lack of support for her severely disabled daughter. There was a lot of publicity and I think she even met the PM. She was desperate. I remember that she felt she was going to have to put her Dd into full time care as there was no opportunity for her to have any respite. This would be about 2010 I think. How sad that there seems to have been no improvement in the support to families without long waits for assessments

Would you consider having your daughter adopted?
I'm not trying to stir up hate, but this seems like no life for anyone.
Where I grew up, the actual well being of PARENTS was prioritised.

It sounds like there needs to be someone working alongside your daughter, physical/speech therapy etc, sooner rather than later. If you haven't done already (which you probably have) id talk to your GP. Also, someone to take her regularly so you both can get a break. I don't know if she could go in a crèche or maybe you could contact a charity who deals with disabilities.

Aw, I'm so sorry. It's not nice to feel this way. Remind yourself that she's only 3 yet and getting the right kind of help alongside could make the world of difference.. Also, if you get a good routine going, with someone who can take her regularly, it could make a big difference too. When you feel exhausted and worn down all the time, everything can feel wrong. Keep fighting for yourselves and contacting people until ye get the help you need. Hugs 🤗

Nobody is queuing up to adopt children like this

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.

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.

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.

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.

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

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.

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

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.

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.

Sorry loads of typos - hope it makes sense

@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?

@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.

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.

@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.