to feel utterly trapped?

OP, I have been thinking of you and checking back on this thread. How are you? I hope you have been able to access some support. Sending you a hug, I have been there.

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.

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.

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.

@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.

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.

All of this.

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.

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.

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

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.

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.

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.

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

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

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.

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.

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.

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.

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.

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?

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

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

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?)