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!

I am so sorry for you and what you are going through. Are you getting any support from Social services? Would it be possible to pay someone else to look after your DD once a week so that you and your husband get a break and can spend some time together? I am sure you love your DD but this is not what parenthood was meant to be.

I think it's really understandable to be grieving the parenthood you both imagined .Im sorry I can only advise that you go to social services, Gp and keep asking for help both practical and emotional for you all. It's going to be a challenge as it seems so difficult to get this help which is crazy as ongoing support reduces the risk of a massive crisis later down the road .Don't ever feel ashamed for needing help everyone would in your shoes .

Thank you for your kind replies.

The GP and support services are involved, but there are long waiting lists for everything. As long as DD is safe at home, she isn't a priority. I understand this, but it feels such a long, dark tunnel all of the time.

We can't pay for a babysitter because DD would scream if it isn't us with her. She tried to jump out of a bedroom window before, when my friend came over with her daughter, who is two years older than DD. She can become terrified of people in some circumstances and I don't know why. She can't verbally communicate very well with us, which makes life very difficult.

I work two days a week and DH works three, so that one of us is always with DD. As awful as this sounds, I absolutely dread my DD days, as it's just a hard slog from start to finish (and she's often up in the night, so the "finish" is very vague).

It's so difficult not to compare with surrounding families. We did NCT and are still in touch with the group. One of the dads recommended meditation, so I went to a session at a local Buddhist temple. It was lovely until I chatted to a woman who I met when both of our DDs were babies. She was telling me that her DD had started doing some sort of toddler yoga class and I felt so sad that my DD could never do that.

I don't want to feel so jealous of everyone else. I'm pleased that their lives are good and that their children are happy and enjoying life. It just makes me feel so awful to then return home to misery, screaming, plans to buy nappies for years to come, food thrown, being hit, broken toys, sadness and stress.

She'll be four years old in two weeks time. She won't be able to start school in September and we won't be able to do enough hours at work to earn a decent household income.

We are trapped.

hi op, I think you need to look at therapy for yourself and DH in order to work through your feelings. could you afford private ?

That would be good, but we'd have to take her with us. We can't afford private, unfortunately.

DH and I had such a nice life before DD was born. We were happy and were so excited to have a baby. I feel as though I'm grieving

Im heartbroken for you and your family @Basikelly. I can’t offer advice as I have no experience, but I’m sure I’m not alone in feeling very deeply for you all.

I am really, really sorry to read your post. I feel your heartbreak in every word you write.

I do not think that what I am about to say will bring about comfort as such; but maybe some degree of solidarity in knowing that I acknowledge that the journey that is parenting is so beset with hurdles and challenge and trauma. For so many of us this journey is not what we set out for it to be.

I have 3 children. Aged 24, 21 and 14. I was blessed. They were all so rewarding and so loved. We lead the lives that you spoke of in your OP. Then in October last year DD1 died. Totally unexpectedly. I am demented with grief at the loss of her. And the loss of all her potential. I have genuinely questioned whether the grief I now experience is worth her having lived. I am, very selfishly, still not sure.

I acknowledge my experience is unlike yours OP. But it is an illustration that when we embark on the journey to be a parent we really cannot know the extent of the joy, or pain, or challenge it will bring us. I never envisaged I would mourn the death of my first born beloved child. As you never imagined you would have to face the challenge of a child with potentially significant additional needs.

I do not have the answer as to where this leaves either of us; grieving the loss of the life we envisaged. But all I can is that you are not alone in your struggles as a parent. For many of us, the parenting adventure has not played out as we had anticipated. I hope you can still find some joy in the life you have.

I read the anguish in your post and I send you love and blessings.

Sending huge hugs.
I have no answers, but am so sorry you are in this situation 💐🩵🫶🩵

Are you in England? Have you applied for an EHCP?

Claim for all benefits that you are entitled to to make it financially easier for you. My son is the same and is probably autistic although less severe than your DD. Have been tempted to just run away.

Why won't she be able to start school in September ? Albeit one with specialist provision? She still has educational, sensory, developmental needs that need to be met by an educational curriculum. Is she at any nursery at the moment ?

Sounds so hard, can you fight for place at the right school? That respite would be such a blessing and she may get therapies that help? There shouldn't have to be a fight but as a parent with an autistic child there's nothing but fighting, which makes everything so much harder.

OP I think you are grieving, and that is OK and also totally understandable. I don’t have any practical advice aside from saying I think this is a rational response, and is nothing to be guilty about. I think we’re conditioned to not talk about the rage/disappointment/despair of these situations. But I would guess it’s incredibly common.

Actually a little bit of practical advice - are there any groups for parent carers in your area? There are some near us where you can bring your DD and talk to other parents in a similar situation. It might help to feel less alone.

Oh my goodness, OP, you write so well . I am almost in tears reading . I am so sorry that you are going through this and I really hope that things improve for you all xxx.

Thanks very much everyone.

I'm ready for fighting!

We've been told that the only special school in the county which could meet her needs probably won't be available to her in September because the EHC assessment won't be carried out in time. There's a huge backlog in our area, apparently. We're currently looking at options and will try to sell the house and move. We can't really afford to do this, but will have to.

I once went to a group for parent carers, but it wasn't quite for me. There seemed to be a bit of 'race to the bottom' and competitive martyrdom, rather than supportive. It made me feel hopeless really. Perhaps I didn't approach it properly and should give it another go.

I would be applying for an EHCP asap-get HV and hospital evidence and contact IPSEA or sendias for advice. I think suitable educational provision for your daughter would benefit everyone in your household.

OP I feel your pain. We also have a son with significant learning disability and autism. He's 32 now and in supported living as last year we were at breaking point, getting older and realising that we just couldn't do full time care anymore. It took a lot of soul searching and feeling like the worst parents in the world. But he is honestly happier, more settled and our visits with him are happy ones.

You are grieving the life you thought you would have and that is understandable. You need to find your tribe - mixing with families with 'typical' children is hard - they have no idea what you're dealing with. You need to build a network of parents with children with additional needs, who get where you are coming from. Ask social services, look online, there are support groups for carers of children with additional needs.

I know it doesn't feel like it now, our children do grow and change and things may not always be as difficult as they are now. Are you involved with speech and language and occupational therapy? Is there support from psychology through social services? They should be able to work with your little one and find ways of making connection, through sensory activities. It sounds like your little one needs nervous system regulation - this can be done through movement, touch therapy, music therapy or deep pressure with weighted vests or blankets. There's lots to explore out there that may work for you.

Finally, I would explore respite care and possibly residential school in the future - it's sometimes the best thing you can do for your child and routines/structure can really help them thrive. Your little one is still very young and you're at the beginning of your journey. There will be highs and lows but things can and do often improve.

Don't be afraid to approach your GP for support - I have at times used medication (antidepressants) to keep my head above water. You're living with significant stress and you can't carry it all alone.

I'm sorry it's so hard for you both. It's a type of grief and a huge shift in expectations.

I think it might really help you to find parents in similar situations. And also get on the case with schools. The council has an obligation to find a suitable education setting for your DD, although you might have to fight for it.

In my city there are lots of opportunities, support groups, play spaces etc for families like yours. They do exist. You might have to consider moving if nothing near you.

I have nothing useful to offer in terms of suggestions or knowledge 😢but just wanted to send a hug.

OP you have my sympathy, that sounds tough. I wanted to share this profile with you. This is ann amazing family, and their daughter has a similar set of challenges. They have found a way, and nothing stops them at all.
I do think you need some support though. Look for low cost therapy near you, and see if someone involved with your daughter can suggest some support. There will be some when you are able to to access it.
https://www.instagram.com/mymumlifeintheshire?igsh=eGVtY3g3dDAyaGp6

We've been told that the only special school in the county which could meet her needs probably won't be available to her in September because the EHC assessment won't be carried out in time.

Who told you this?

Don't just accept no for an answer, put pressure on the council NOW, make your DD's legal rights clear, you may be entitled to legal aid for her. Yes you may still not get a space for September but if you let them they could drag it out for YEARS.

Oh gosh. I'm very sorry for your terrible loss. That is awful, you poor thing. A very sincere virtual hug to you. X

Thank you everyone. Sorry for not responding properly - I'm currently with DD, so I can't read and reply properly at the moment. She was banging her head hard on a kitchen cupboard in frustration because there's no ice cream in the freezer. This is just hellish.