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!

EHCP is a government system. It includes various assessments, the most important of which from an educational point of view is educational psychology (although occupational therapy and speech and language therapy are often also very important). It is possible to contract these specialists privately but there is a shortage and being able to pay doesn't always mean you can find one.

It is a complex system and involves a lot of filling forms in and endless detailing of your child's deficits, which is a) practically hard to do when dealing with a child who sleeps poorly and trashes the house and b) depressing.

However when you get the right specialist report/support it can be really helpful. In OP's case help with communication sounds really crucial.

Hi OP, I really heard you in this post. You’re in a really dark part of this journey but it won’t feel like this forever. Once DD has all of her diagnoses and you have obtained an EHCP you can start looking for the correct education setting for her. I’m a leader in a special school and we honestly change lives through supporting emotional regulation, providing routine and consistency and providing families with a community of people in the same boat. Start looking around now to find a school you think would suit her and make that your aim x

Someone said contact the MP. When I've emailed my MP about SEND (he's not that interested tbh) I've been sure to point out that the Borough "export" 20% of their EHCP kids for education (on their own published figures).

More positively, if the OP and her husband can find the right school, it doesn't have to be in their local authority.

My DC goes to a school in a neighbouring Borough because it was the right one for her needs.

I wonder if people really think these comments are helpful. It speaks volumes of people who haven't the slightest idea of the OPs situation. Residential places don't exist for 3 year olds and the ones that do exist are for older children are VERY few and far between and are subject to strict assessment and funding. You need to be assessed for these places and then funding needs to be approved. And as funding for social care gets worse every year, it gets even harder to fund these sort of placements.

Don't get me wrong, I work in social care and think the lack of support available to people like the OP and her daughter is nothing short of criminal. But people who have children with complex needs don't have any more coping skills than those parents who don't have children who don't have these needs. And most of them are barely coping and fighting for whatever crumbs of support they can get.

But it simply is so unhelpful and wildly unrealistic to suggest phoning social services and saying you can't cope and for your child to go into residential care. It just doesn't work like that no matter how desperate people are.

And as for people suggesting having a 2nd baby?! Have they read the OPs post? She has a child who struggles in social situations, is aggressive to other children, runs away, tries to climb out windows, bangs her head off kitchen doors and had exhausting meltdowns and tantrums and the OP and her husband are both struggling to cope. Do people honestly think the solution to this is to bring a vulnerable newborn baby in the mix? How on earth do people propose they meet the needs of a baby while trying to cope with the above? Or what they do if the older child is aggressive towards the baby or tries to self harm themselves or climb out a window while the OP is feeding a baby? Not to mention how the babies childhood is going to be shaped by their older sibllng and that's if they don't have additional needs themselves.

I really hope OP you find some comfort with the more realistic and sensible solutions in this thread. I think as well looking for local charities is a good starting point as well. As I said the absolute lack of support is criminal. We always say we need a village to raise a healthy baby yet special needs parents who are in need of this "village" more than anyone seem to be the ones expected to do it on their own, all the time.

All of this.

DS1 did not have anywhere as severe needs as what it sounds like your DD has - he went to mainstream school and is exceptionally clever.
But he was in nappies until he was 7, didn't utter a single word until he was nearly 3 and has used to bang his head on the floor if too much sensory overload. I understand how you feel. We did have 2 younger children and the comparison between them makes me sad. DS1 is in his 1st year of Uni but is planning to drop out. He wrote a sucide note last year but then went to counselling and seemed to be back on track. However he is not enjoying the workload at Uni.

I feel sad that he may never lead a normal life - after his A-levels he did not see any friends - only interacted with us at home for the whole summer of 5 months.

However he is still here and his life may not be what I want for him but as a parent all I can do is help him find his place in the world.

@Basikelly

Do you have a Portage service in your area? Do you have an SEN Pre-School?
Your health visitor can refer your daughter for Portage. I think parents can in my area, so you might not need to go via the health visitor.

It doesn’t sound like your situation is anything like the OP’s. By all means offer support, but I don’t think you can claim to know how she feels? It doesn’t sound like her DD will be going to uni, for example.

I wanted to say my heart goes out to you op. I know the heartbreak all too well. I was a single parent to my severely autistic son until he went into a placement as an adult and it was hell on earth. I was luckier than most to get respite at the time but even the respite carers didn't know how to cope with him so I felt like I was micromanaging my son plus the carer. My physical health was poor and I became seriously suicidal. To be honest I wish id told ss that I couldn't do it because I still have trauma and poor physical health from those years. My heart breaks for you because I know the grief well and it is so, so painful and it was almost impossible to bear when my friends had typical children. Just please know this won't last forever and you can get your lives back to some extent. I wish I had something more helpful to say but I do absolutely get it and remember the daily dread and fear all too well. It is soul destroying. I hope getting your daughter into school and some sort of structure will help her. Dm me if you want. Take care.

OP I hope some of the replies have been helpful- I replied upthread.
And then thought - I forgot to say if you use Instagram there are some useful accounts there. Although my DD doesn’t have (yet/if ever) a diagnosis of autism (multiple family members do but as she’s nonverbal and physically disabled she can’t do any kind of standard testing) and has global development delay.
As I said upthread she’s developed immensely (she several times nearly escaped from me in her wheelchair yesterday) … so I hope there’s some hope in these kinds of stories.
Im thinking in particular about an account called “stories about autism” - by a dad with 2 autistic boys. It’s really interesting to see the changes over time/what doesn’t change/ how he and his ex parent/cope, strategies, etc. I find it helpful - even if the diagnoses don’t exactly match.