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!

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.

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

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.

@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.

Brilliant advice x

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.

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.

Was she born prematurely OP?

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.

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

@LadyMacbethWasFierce sending you SOOOO much love ❤️

Sorry to hear this OP, it can be very challenging and feel very isolating.
I have two children with SEN and associated medical needs and I definitely went through a a very ‘dark’ period but it is getting better.
My youngest (who sounds very similar to yours) will only ‘tolerate’ softplay, swimming and trampoline parks - is this something your daughter could participate in (perhaps maybe one of the quieter sessions that some places offer?)

I’m sorry.. was this post intended to be helpful?!

Fuckssake, people. You’re writing off a three-year-old! So much can change once she’s in the right school and the OP and her husband are getting more support.

OP, I really, really feel for you, It’s a shitty situation but there are small tweaks that can make things feel less bleak. As PP have said, insist on a social services needs assessment for your DD, and a separate carers’ needs assessment for yourself and your husband. It can be a battle to get them, but we found that once we were in the system, SS took the fact that we were close to the edge with no family support pretty seriously and put together a (modest but desperately needed) respite package for us.

I won’t repeat the good advice you’ve had about pushing the LA harder on the EHCP - your daughter has as much right to an education as any other child - but also, remember that if the council can’t meet her needs with their own schools, you can ask them to consider schools in other LAs or private SEN schools.

And definitely stay off social media and make friends with some local SEND parents. They’re the only people who really get what you’re going through.

I feel like I could have written a lot of this myself. I get you. I'm in a similar boat. Daughter just turned 4. Our first and probably only child (as I feel awful saying but I couldn't risk having another child with such high needs). Desperately want/ed those typical experiences of being a parent. Am grieving and angry and sad and terrified. Something I will say however is that sometimes they completely surprise you and do things you never thought they would eg might seem small but my daughter has suspected motor planning issues and the last day, for the first time, climbed by herself all the way to the top of a slide.
She's also in the process of toilet training, although it is taking a lot longer than her neurotypical peers. Of u had asked me even a few months ago I would have said she'd be in nappies for many more years, if not forever.
You need support. Are you getting any help whatsoever eg preschool? My daughter is in a specialist preschool and also I've privately hired a home tutor (although she doesn't get much tutoring as such, sometimes it's just a break for a couple of hours and I usually nap!). Can you look into private carer hours even for a couple of hours a week? Some charities may also help with this. I'm here if you ever want to DM xx

I feel for you, OP. Your situation sounds extremely difficult.

Would you be able to arrange a visit to the school which is suitable? I'm wondering whether the staff there could advise you.

Is it possible to have an EHCP assessment done privately?

OP I'm sorry you're struggling so much. Is there a charity which supports people with the condition your DD has?

My DS has a very rare disability and a charity helped us to understand what was happening in the early days. The same charity also connects parents which is helpful when your isolated.

The are some really thoughtful posts here with great advice from people who know what this struggle is like.

I hope you are not letting the handful of silly and unhelpful posts get to you, OP. People who haven’t experienced this simply have no idea, even if they mean well.

I don’t know if you’ll be back, but if so I’d love to hear more about your daughter. What age group does she seem closest to in terms of her development? Can she say or understand any words, and does she smile and show affection?

She sounds similar to my son in some ways. He also used to be so fearful that we couldn’t ever take him out of the house, or have people visit us at home. My maternity leave was bleak. I heard about other mums going to baby groups or cafes or even just taking their babies for walks in the buggy, and I’d think - HOW?! I couldn’t do any of that.

The fear of people has improved (I can say more about how, if you would like). Now our biggest struggle is his violence. He is totally nonverbal and understands very little so discipline is challenging.

I hope you have an okay night tonight and that she doesn’t keep you up. We have recently been prescribed slow-release melatonin (brand name circadin) and it has helped reduce his night wakings. Could be worth asking your paediatrician about.

Sending strength for the next hour, which is all you need to think about. One hour at a time, we will get to a better place.

My best piece of advice is get yourself an Adult Carer Support Plan drafted by your local Carer's Centre. It's an assessment designed to see where you're needing support as a carer.

It's a valuable document that can also help you qualify for respite breaks too.

So sorry to read this. I have a child with high needs and have experienced some of what you are feeling. Presume you get DLA? It makes a big difference for us, but sounds like financially you don't have much scope for buying in help. We are midlands and there are some specialist respite group activity providers (e.g. arts). Wondering if there's something like that near you that you could try out. It sounds like you desperately need respite, OP. But you've probably researched/ tried everything possible and maybe just need to vent. I hope you find something that will help soon. Fingers crossed regarding getting her into the right school soon.

Are you projecting your own experience here? It's not inevitable that the child will go into residential care and beat up her mum, nor can you make the assumption OPs husband will leave. What a negative comment. The child is 3 years old, she's not even having additional support at school or home yet, give them a chance.

Just to offer a bit of hope

I didn't start speaking until 4.5 years old. Apparently I didn't understand much either. Went to a special school, had lots of speech therapy etc. Suddenly made progress and by 6 I was in mainstream, catching up with others. (I have very little memory of those early years, but relatives say they were very worried about my future)

I'm still mildly autistic as an adult, but nothing like back then. So don't assume your daughter will always struggle this much. Get as much intervention as possible, asap

I am, and have been in your position @momager22 - it is heartbreaking, a truly horrendous experience, and simply relentless. It is life limiting to the whole family, I understand.

I'm sorry if I missed this - as I am skim reading while chasing my own DC - do you have an EHCP in place? And have you started looking at schools? My DC is in a specialist school now & that has been life changing - knowing he is in a setting that can meet his needs and I'm not constantly battling anxiety.

I won't quiz you on what support you have from the local services/ DLA etc, as I know how overwhelming that is in itself, but these are the things I would prioritise if I were you.

Short Term:

1. Speak to a GP & get support for your sleep & mental health/ anxiety - don't shy away from meds.
2. Get on the waiting list for counselling - regardless of whether DD is around, do it via video link & explain the situation, or defer until DD is in school.
3. Draw up a rota with DH to enable you both to have some downtime each day - even a walk/ drive listening to a podcast is vital.

I'm a bit further down the line from you & still trying to carve out a new life for
myself - we had to move to a new area to support DS' needs & I had to give up my career - it's exceptionally lonely & soul destroying at times.

In the long term - we are gradually renovating our house to meet DS' needs - the garden is now totally enclosed, his bedroom has a special bed & equipment & we have cameras set up, so we can keep an eye on him from elsewhere in the house - all of which allows us a little bit of freedom & opportunity to just have a coffee/ sit down etc. Our next project (when we've saved enough) is to build a garden room/ studio - which will be a DS free zone & hopefully a sanctuary for us when we need an escape & when our house is trashed (which it always is). I know this isn't possible for everyone, but it's finding those small ways to make life incrementally better.

I hope in the future that DH and I will both work 4 days per week & have one day a week together to just be with one another & do those things we really want.

You are really in the trenches at the moment & it is about survival. I'm so sorry you are going through this xxx

Hi op, it sounds like an absolutely awful situation you are living through. My heart breaks for you to read about it. You must feel so much grief about what you thought having a child would be like. I hope thst there is a way for you and your husband to get some respite and to regain some of your old life.

I have a friend who has a son who had a global development delay. He was less severe than your daughter sounds. He didn't crawl until around 18 months and walked late as well, he also used to cry a lot and had many sensory issues. Well still does on the crying and sensory issues I believe. But he's a lovely boy.

I met him first when he was 4 and starting school with only a handful of words and not potty trained. He potty trained at around age 7 I think. He started at a regular school, but it does have very good send provision and eventually he got a place in a specialist school in year 3 and now a year or so on is speaking full sentences and reading books, apparently below his age but they have sentences etc... Watching from the outside his development is astounding.

What I'm very clumsily saying, please tell me to f off if I'm annoying you, is that she may not be fixed in this point for ever? I appreciate some children are and don't develop passed this point. But she could still learn to speak or at least communicate more in some way. Maybe there will be a time when it gets easier for you all?

I'm sorry a regular school won't take her until she can get a place and the specialist school. I hope when she does eventually start you and dh can have some days off together without her and catch a well deserved break.

Very sorry to hear about your difficulties. Could you go to your MP? I know that not all MPs are created equally but mine recently worked on a case similar to yours and managed to secure provision for the child. It's worth a shot I think.