to feel utterly trapped?

Nobody is queuing up to adopt children like this

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 🤗

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.

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

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.

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

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.

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

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

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

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.

The EHC needs assessment has a mandatory timescale and should be completed within 20 weeks.

If you submit the application now, it really should be done in time. Legally she is entitled to a full time education that meets her needs. Even if it isn't done by September, it will be done afterwards. You absolutely need to be able to look to the future and see a tiny something of light (that's not the train coming)

I remember feeling how you feel now, keep working, it keeps you from being utterly swallowed up by being your daughter's mother and its so easy to get swallowed up in.

I'd really like to tell you it gets easier, but the milestones your friends children reach are often still a gut punch, the gut punches do get softer.

Hi OP, I'm sorry things are so difficult. I have a SEND child with much lesser needs but I remember age 3 was definitely a low point. Regarding the council, fortunately there are posters on here like @ExistingonCoffee who know the law and procedures inside out and will help you pressure them to sort you out an appropriate school place. If grandparents are helpful but hands on babysitting isn't possible, could they help you with some of the paperwork?

Please try not to compare yourself to others. I've had to make different educational decisions for DD to our peer group and it is hard, but I made the right decision for her.

@LadyMacbethWasFierce I am so sorry for your loss

www.mumsnet.com/talk/special_educational_needs/5309128-ehcp-support-thread-no-5?utm_campaign=thread&utm_medium=app_share

You just needed to vent right? You are in a very stressful situation i really feel for you. I think you should deffo talk to your husband about this u will need your relationship to stay strong and to support each other for you to be able to function. Make plans to help each other - give each other respite etc. You are amazing for what you are doing already though!

Of course you are grieving OP, this is a huge loss from the life you expected and the life that your friends have. It's deeply unfair, and made worse by our unfair society that does not provide adequate support for disabled children.

All your feelings about this are completely fair.

It might be worth trying some other carers groups, perhaps online, to find one which clicks with you. In awful and isolating situations, peer support and friendship from others who truly get it can be the most helpful thing.

You will need to make a fuss as your child should be able to start school when their peers do. I have noticed it's those that shout the loudest do get help the soonest.

There are a number of groups near me that do run specific Sen sessions. These are 'fun' groups doing sensory play and generally seem to be run by former or current teachers trying to make extra money so I think they would be understanding of your child's needs and while not quite the same as the activities you imagined taking them to, is an alternative that might be possible.

Why do you need to wait for the ehcp? Just enroll her in a mainstream and let the chaos commence, gives you good evidence too. She’s legally entitled to an education at the same time as everybody else, don’t let them con you out of this. If they can’t manage to sort their shit out in time for a special school, it’s not your problem.

The LA will drag this out for as long as possible. Enroll her in your local mainstream now, they have to accept her. Don’t let them fob you off, she is legally entitled to a full time education

Has an EHCNA actually been requested? If not, do that yourself now using IPSEA’s model letter. If an EHCNA has already been requested, what week are you on? The EHCP process is governed by statutory timescales. These timescales aren’t optional despite what LAs think.

Does your area have specialist early years assessment places for DC who are going through or need to go through the EHCNA process? Some LAs do.

You need a home OT assessment ASAP. This will look at making the house safer and better meet DD’s needs.

Request social care assessments. A carer’s assessment for you and an assessment from the children with disabilities for DD. On their website, Contact has model letters you can use.

Also look at your local short breaks offer. What is available varies area to area so there may not be anything suitable, but it is worth looking.

See if Home Start can support you.

Are you receiving DLA for DD?

OP, do you think part of the issue is her not being able to communicate her needs to you and others? Not being able to tell you when she is hungry, tired, sad etc? Have you tried PECS (picture exchange) or another way to help her communicate her needs/feelings? 💐

No advice but solidarity for everyone grieving.

Heart goes out to you. I feel a bit on eggshells suggesting this but have you seen BBC's There She Goes. It was brilliant for giving myself a window into a different parenting world and the interface between my experience and yours.

I hope you find the whole series, this is the concluding special.

https://www.bbc.co.uk/iplayer/episodes/b0bp2zq4/there-she-goes

Agree with others. Apply for an ehcp yourself. Ask for support through Sendiass. Your dd will be entitled to a school place. I take it she’s not in. Nursery setting? I think a break for you all would be good. Even without an ehcp some areas have high needs funding for preschoolers though this is dependent on area.

My heart breaks for you, your DH and your DD. You've all be dealt a terrible hand in life and it's not one that you can dodge or make easier. Totally fair that you feel short-changed - I would too. If it's currently possible for one of you to manage her alone for the weekend I'd suggest each of you having a weekend away each month to recharge and have a break. Especially as you don't know how long it will be possible for one person to manage her alone. Hugs.

I’m so sorry you’re going through this and your feelings are totally valid.

I think it’s important that you and DH feel safe enough to speak openly to each other about this, as sometimes just venting can help.

3 year olds are hard work.
As she gets older, she will get easier, even if she has additional challenges compared to other children her age.

Lower your expectations too, as many parents find having kids but more challenging than what they realised.
My sisters toddler is an absolute angel but my sister started crying in ASDA because he was trying to grab everything and she just felt overwhelmed.

My friend has a child with the same condition and she has found joining FB groups really helpful just for that support and having people understand what you’re going through.

oh my god @Basikelly I read this and HAD to respond. I am about to go out so will try and write a longer response later but just to say I have a 3.5 year old with a serious delay and there’s so much of this I could have written. I am not over it and never will be, but some things that have brought some light back to my life:

1. sertraline. i’m on 100mg a day. the constant, bone-shaking anxiety about the future is reduced to occasional worry

2. diagnosis. my son has a very rare genetic condition that means he is likely to always be intellectually like a child. it was a devastating diagnosis to receive; a true worst-case scenario. but the 2.5 years since receiving it have felt infinitely easier than the first year, where it was clear something was wrong but we didn’t know what.

3. childcare. he is in childcare five days a week now. he went at 14 months for 3 days a week and the first 6-8 months were absolute hell for him and us. he was miserable. constant meltdowns there and here. eventually he got used to it and now he enjoys it. i don’t feel guilty. weekends and evenings are the absolute maximum time we can handle him without spiralling. i don’t .

4. this will be controversial, but we had another baby a year ago. we only ever wanted one child. but within hours of having my son it was clear something was very wrong and i knew there and then the pain i was feeling could only be salved by experiencing the motherhood i had imagined. it has made our lives very much more difficult but it was the right decision and i believe we can still give both children a good life.

solidarity. it is awful