have you ever had your child in care temporarily?

[namechangedforsaturday]

Long read, so if you don't like long reads, please don't read, rather than complain about a long read. Please be kind, I'm at the edge.

Name changed for this, as outing, but if you've ever had your child put into care temporarily, could you tell me how it went or give me some words of comfort?

I've just called social services and told them I don't think my child should be at home with me right now. I asked doctor for a referral to them about 2 months ago as reached the end of my rope and had spent a whole night unable to sleep and crying, at not being able to cope, but never heard anything back, and then I asked her school for help and they referred to Early Help, but they haven't done anything for me- just want to go through parenting strategies with me, when they truth is, I know how to parent by the book, my daughter doesn't respond to any of it and I'm struggling physically so can't meet her needs each day. Sorry, that was a long sentence!

I've been struggling with my health ever since she was born, but couldn't get anyone to listen or take me seriously. They always seem to imply that I just need to exercise more, or it's all in my head and caused by stress. I've seen three different physios, and the issue hasn't gotten any better, and despite diagnoses, I can't get any help or support with my needs, and when applying for a bus pass, the doctor even said to me 'You're too young to be disabled', and refused to sign the form for me. My physio emails me workouts to do, and when I tell her about issues I'm having, she just implies I'm not trying hard enough. Some days I literally cannot walk.

So yes, I am stressed, but the stress began when the physical disabilities began, and the stress is as a result of not being able to do the things I was able to do before. It's definitely not in my head. I had started to believe that maybe it was all in my head, and really did try with journaling and therapeutic techniques, to try and 'heal' these things away, but yesterday I was finally believed by a doctor, when I went into the walk in centre with arms which were going into spasms whenever I lifted them, or moved at certain angles. I'm okay with typing, because I'm sitting up straight and making sure I barely move my shoulders.

She said she could see my back muscles spasming as she touched in certain parts of my back, and gave me some anti-inflammatories and codeine. I haven't started them yet as I'm worried about being drowsy around my dd. She advised me to get a second opinion from a different rheumatologist. Rh diagnosed me previously with fibromyalgia and mild hypermobility spectrum disorder, and referred me to a terrible physio who just gave me bum clenches to do, but I believe I have EDS, or more than mild hypermobility, and that I'm deteriorating since giving birth, breastfeeding and solo parenting a very high needs, violent and angry young child who doesn't sleep very well. I don't dislocate (only once ages ago) or have stretchy skin, but my feet are constantly rolling over side ways and everything feels crazy loose, all over, and the physio exercises are making minimal differences. I had six months where I could barely swallow food, but docs just wanted me to have thyroid tests- all fine. It's sorted itself out now, but there are still times I choke for no reason.

I'm trying so hard to get better but my daughter is with me all the time, has massive meltdowns after school and refuses most of the time. She's 4. She won't eat any food I make for her and asks for chocolate all day constantly. I don't give in, she can have a little bit every day, or every other day but she's relentless and refuses to eat. I literally cannot meet her constant need for stimulation and try to get my health sorted. Let alone getting more and more into debt trying to meet our basic needs on UC, trying to fill in disability benefit forms, with no support, and feel as though I'm neglecting both of us. Last night, my spasms and arms were so bard that every time I rolled over, I woke myself up in agony and crying, and with my daughter attacking me violently when I refuse her chocolate, I can't defend myself at the moment, as I'm too weak.

I've tried every door and avenue, trying to parent her alone and keep her with me, but I don't think I can do it anymore, or my health will just get worse and worse.

I'm waiting on a call back from out of hours social services.

Btw, dd was referred for autism pathway by health visitor 18 months ago, but just had results of assessment back, and they've said no ASD as they did her observation in school where she masks, and school argued back with their observations of abnormalities and said 'it was unusual for her to act that way'. Which it isn't, so I don't know why they've said that, but I haven't the energy to fight back.

I feel like I need a few month of DD in care, so I can get my health sorted, chase up for second opinions and help, get out of my debts, get the ball rolling with disability benefits, and take control of my spiralling health and life, and home, which has become chaotic and dirty.

Some great advice on here OP. Hope you manage to get some support for you and your daughter.

I’m sorry to hear school haven’t been helpful OP, but is your daughter getting free school meals? Sorry if you have mentioned this and I missed it. There is also Pupil Premium and whilst - if she is eligible - they don’t have to spend it solely on her, it’s money to reduce challenges that children face which affect their ability to engage in education, so you could ask how that money is being used in a way that benefits your daughter. I’ve seen it used to pay directly for things which benefit a particular child.

https://www.gov.uk/government/publications/pupil-premium/pupil-premium

She could also be classed as a young carer perhaps? And you could also ask if there is a vulnerable families fund or similar locally.

Sorry for asking questions and giving you more stuff to look at but I wish you well x

@namechangedforsaturday this is heartbreaking to read and I'm so sorry you find yourself in such a desperate situation. All is not lost though. Here are 3 things I think might help:

(1) While funding is being cut for local community groups across the UK, there should be some local support in the voluntary or CIC sector in your area. It looks like this gateway is a good starting point for finding what's available:

https://kent.connecttosupport.org/information-and-advice/

(2) It might be worth seeing if there are Young Carers support near you, although your child isn't actively carrying out caring duties for you, she is impacted by your disability and young carers support service will provide support to her (which may also give you some respite).

(3) reach out either to your local MP or your local councillors (or both), tell them what you've told us and ask them to help advocate for you.

Mum's know best. If she believes she is Autistic, she is right. Putting all the blame on OP is not helping her. I don't believe for one minute OP is responsible for all the behaviour problems. The situation will exacerbate it.

You are absolutely right in that Autism does not work as a one size fits all. Excessive fears are however very common. I imagine you already know that as a mum of an Autistic child.

Yet, I sense you are just another poster on here lacking empathy for OP.

Apologies - I just read your post again. Your situation is clearly different. I hope you are getting all the support you need as I know in this climate it must be difficult getting all the care you need for your child ♥️ I can see why you would be upset by this post.

. "i'd rather her go into care for the rest of her life than me end up in a wheelchair from not being able to recover, and her suffering as a result. i'm ready to take that risk."

This incredibly messed up. A wheel chair is a mobility aid, it's not the end of your life for gods sake. You would prefer your own kid
in care FOREVER than for you to be in a wheel chair?!

Christ on a bike. A wheel chair makes your life easier. Maybe you should try it? In the mean time

You can order clothes online to be delivered. If your daughter is always late, get up earlier and try harder. You need to find your reserves because the trauma of a child being placed in care and removed from her mother is much worse than what you are going through now. Send her to your mums, ahead she knows her grandmother and isn't just being taken from her family.

Sincerely, a part time wheelchair user with multiple disabilities and mum of 4 adult kids and nanny to 3 grand kids.

OP I am a children's social worker. What you need to do is push your early help worker to refer you back up to level 4, so your DD gets a social worker to do an assessment. You must insist that the threshold is met due to your suicidal thoughts and DD's needs that you cannot meet. I've picked up cases from early help that are less concerning than yours. During the assessment you must tell the social worker that you need support and advocacy to get an adult social care assessment, apply for PIP for you and DD, get back on the autism pathway and get a referral for an EHCP started. The social worker can support with all those things as part of an assessment and when it is complete after 2 months can refer you back to early help again if that's what you want.

What you won't get is a foster care placement for your DD or paid carers to come into the home and help you. You may get that through adult social care eventually but not from a children's social worker.

She's just desperate and crying out. OP can't think straight because she's on her knees. The gaslighting is incredibly traumatising for her. She's probably had enough of that and for many the meltdowns are just too much to cope with. OP has no one. She's clearly had a traumatic upbringing. I don't believe she doesn't love her daughter, not does she actually want her in care. She is utterly broken. And then she has to deal with everyone bringing their own issues in as a reason to berate her. I have never seen anything like this other than on MN.

I think it's wonderful that you have achieved alot in your situation but it is not a comparison to OPs situation.

@Mammma91 OP already stated the father is on another continent (as is his family) and basically out of the picture.

Please read the updates before posting

That's not a thing that is an option.

Also a social worker. You need an adults assessment, daughter needs child and family assessment or at least Early Help to set up a TAC or TAF. Early Help worker could help you apply for PIP or refer you to a service that can. Shocked school won’t let her go after school club for free, they have money like pupil premium. She sounds like a scared little girl likely worried about her mum but not being able to vocalise. School could be her routine, even safe space which could be why she is more settled in school. Perhaps she doesn’t have autism. Also it sounds being with your mum could also be traumatising for her. She needs to feel secure. Can school offer any type of therapy for her? Putting her in care should be the absolute last resort, she will be re-traumatised. Please keep reassuring her that you are ok and will always be there for her. As you know the stress will be making your health worse. Try anything to have a little bit of quality time with her. See if there are any other voluntary organisations that could provide any time of help- Timebank, Coram, Barnardos etc. don’t give up

OP, I looked back through my emails and the funding I received via Adult Social Care was in the form of direct payments. It was a personal budget to enable me to pay for things to help me as a parent. I was eligible based on my diagnosed health conditions. My son wasn't diagnosed Autistic at the time so I believe it was based on me and what was going on with my health.

The more supportive and understanding posters working in that field have already advised regards making contact with adult social care as a priority.

I also found Barnados offered activities in the evening for kids with extra needs. I joined healthy minds which was run via Barnardo's and got some respite that way. They do alot of ad hoc activities with kids of all ages. Due to funding, it wasn't too often sadly.

OP have you seen the most recent criteria for EDS? https://www.ehlers-danlos.com/wp-content/uploads/2017/05/hEDS-Dx-Criteria-checklist-1.pdf
in general, there’s been a recent shift in EDS diagnosis away from pain and towards more body systemic issues such as heart problems and spontaneous prolapses. Regardless of whether your issues are HMS or EDS the treatment for hypermobility and join pain is the same: physiotherapy and painkillers. I have cEDS and a good NHS physio got me out of a wheelchair.

Care or foster care isn't some magical place OP. Your dd will likely get attachment issues from not living with you and will feel abandoned setting her up for a life of feeling not good enough. Foster care in itself is a traumatic experience and even more so if she gas autism.

What you need is support to manage your MH and physical health.

This is very very simplistic and basic but have you considered allowing the chocolate each day? Could be in the form of chocolate spread on toast / hot chocolates etc

This would - in the short term - remove an obstacle which you say is causing her to be very upset and triggering her into screaming. It's only a very small thing but you need to make your life as easy as possible right now

This has to be better than you saying you're screaming back at her each day.

Really good advice. You hit the nail on the head regards just letting things go. I had to accept all these sorts of things to make life easier and manageable. My son has a hot chocolate most mornings. The fight is not worth it.

@Pantaloons99 yes, we are in agreement.

I appreciate I'm very lucky in that I've never had to face these difficulties but I have had times as a single parent way back in the past where my eldest refused everything apart from peanut butter. So that's what she got - every meal and every day. For 6 months. (She's now 25 and a career high flyer so it really did her no long term harm!)

I'd also look at interactive books / role play games you can play from the sofa / do you have a garden? Open your back door and let her out there. Could you hire a late teen babysitter once or twice a week for a few hours? Purely to engage her in some play.

Use Amazon and Vinted for clothes. Pop a post on elsewhere on this board asking for tips for how to entertain a child when you're unwell and have very little support. Can you ask on your local community Facebook page for assistance? People can be very kind with assisting fellow community members with simple meals / a bit of shopping

There's probably quite a lot you can do to ease this slightly in the short term but you'll have to think outside the box

This is good advice. My close relative (most likely autistic himself) would only eat Jaffa cakes when he was little and his mother had to accommodate this. He eventually grew out of it. He is now in a professional occupation and as far as I am aware, doesn’t have any health problems in his middle age and is not overweight.
We have a big pattern of restrictive eating and autism in our extended families.
My son was underweight when younger and his developmental paediatrician said we must give him anything he is willing to eat to maintain long term height growth. His recommendation was 2 or 3 scoops of ice cream per day!

@namechangedforsaturday In your shoes I would get a slow cooker, rice cooker and air fryer so you can cook basic and simple meals at home with minimal washing up. Even your 4 year old will be able to prepare and mix the meals if you instruct her step by step under supervision (no knives obviously). You can buy frozen already pre chopped onions, carrots, peas, beans, dried pulses, canned tomatoes, pre-made stock and herbs etc that can be thrown together. You can get jars of tomato paste, crushed garlic, ginger, chilli and various curry pastes. If you make a large amount in the slow cooker you can just reheat the leftovers over a few days.

Big hugs.
I haven't been in your situation but a suggestion is pop annon post on a local Facebook group it's amazing who else may be able to comment and provide support. Worth a go.

I have to say I'm shocked at the posters telling the op to 'find reserves' and pull her socks up for her child...They seem to be ignoring the fact that she's all out of reserves.

Desperation doesn't happen because someone isn't trying hard enough, you know.

And living with chronic illness is disabling on a level different to mechanical disability.

A bit of compassion wouldn't go amiss.

It's not that I'm not compassionate. It's that OP taking agency of her life and her daughter is the best thing for both.

Social services aren't babysitters. Signing section 20 will be a battle and then living with knowing you put your 4 yr old in care and trying to get her back will be an awful experience for both her and dd. It will cause untold attachment wounds for dd.

You only have to be a good enough parent 30% of the time to not completely ruin your dc OP. So that's 10% in the morning before school (and getting dd to school is good parenting) and then 20% after school. That is doable. Life doesn't have to be the blueprint of perfect health, family, home etc.

If you're getting PIP or other disability benefits use them to make your life easier. So pre prepared food, dishwasher/paper plates. Let her have the chocolate, there's no point battling about food. Take agency and work out what you need to do to make your life work.

Hi op, I see she is 4 is she already at school or does she start in September? (Sorry if this has already been said on your follow up posts) Could you hold out till she starts school in September then use the time shes at school to sort out all your stuff?
I admit I'm not an expert but my understanding is once they go in care it's quite hard to get them back

Ok ignore my last post now I've read all your posts and see she is already at school, I'm guessing the two week Easters holiday doesn't help you. When it's over chase up all those doctors for your health issues maybe some medication for the pain. You'll have to be really confident speaking to the doctors and don't let them fob you off. Same with pip someone I'm close to Has schizophrenia, really bad, but doesn't get pip because when he applied he answered the questions incorrectly, they are worded to put as many people off as possible I've heard you really need to exaggerate or they will fob you of. This pip would maybe pay for the after school club so you have some time to rest while your daughter is doing something she enjoys

Sorry but I think this is unnecessarily harsh if op is in chronic pain and can barely move you can see why she's feeling this way.