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.

rheumatologist referred me to a fibro support group and a terrible physio, then discharged me, with no follow up.

I think a GP can diagnose hypermobility. But you'd need a good one with a brain in their head. It is massively underdiagnosed. If you have MHealth conditions on your health records then this might help with a PIP application. Having a diagnosis of EDS or hypermobility would also help with that.

Can your mum pay for after school club? I know how much you don't want to go there. She's your best option right now. I have been in a similar position OP. I spoke to a counsellor at length and she's fab because she says it as it is. She made me realise I had very little choices. And although I had so many issues with how I was parented and certain behaviour, it often is better how they treat the Grandchild than the child. I imagine she loves your daughter to take care of her. I'm not downplaying what you have endured by the way. It's a horrible position.

She has less money than me because she spends it all on cigarettes. She has bipolar so is on ESA and it's the same amount I get for being on UC with one child. She lives on beans and porridge some weeks. She can only have my daughter as she has a bus pass and sometimes I give her the food she needs for those days (for herself also, not just my daughter). thr After school club is £8 per day.

I have a hypermobility diagnosis, but the GP said there's nothing they can do.

I don't know how she is with my daughter as I'm never there, but when I am around them, I've noticed she's harder on her the older she gets. My dd never wants to go anymore. She doesn't take her out, apart from a walk to the corner shop and they sit and play in darkness with a lamp on as my mum won't open her curtains. I mention the park by her house for dd and she says 'Oh I hate going to the park'. Plus she smokes a lot and it took a lot of fights with her to smoke outside most of the time, but I'm sure she still does smoke indoors when my dd is there. She smokes indoors when she's not anyway, so my dd always comes back smelling of cigarettes and I have to re-wash all her clothes. It's not great tbh. I know she plays with her and makes a fuss, but I'm not sure for how long, as I've stayed there in emergencies before and my mum will be all over dd to begin with, then suddenly become very cold, withdrawn and hostile to us by the second day.

Yep - you need to request an assessment from adult social care. You may be eligible for a certain number of hours of PA support a week.

In relation to Section 20 - it's not an "order" and the parent retains all parental responsibility. It's an arrangement you agree with the local authority for them to accommodate your child. Before agreeing to this, they will complete an assessment, and only if it is in your child's best interests will they accommodate her. I'm sorry to say, but it seems to me that it's unlikely to happen. They will look to gather as much information about your wider family and what they are able and willing to put in place, and the Children's Services may fill in a gap. Depending on your child's needs, they may consider providing respite care, but this (ime) is only when your child has a profound or severe disability. They usually won't accommodate a child just because a parent has their own health needs. They accommodate when they assess that the child is at immediate risk of significant harm - and Section 20 is used very infrequently for such a young child.

@Shayisgreat I'll try adult social services again on Monday, thanks.

So sorry you're in this situation, surely there must be some some help out there and you are desperately looking for it. It sounds like you are going through the needed avenues to get it and I would like to think any services which recognise the need for a child to be supported while the parent is struggling needs to make you a priority. It must be soon, all the evidence is there now, keep up the reminders to everyone involved. Best of luck, I really hope it improves for you both. Xx

OP, I just remembered that some years ago I called Adult social care in tears in the same situation. I stressed the issues I had due to my health conditions so stress that. I ended up getting quite a substantial budget from them to pay for help. In the end I paid alot back as didn't need it. My health did improve back then and family helped (dad also involved). You absolutely can access money to pay for help for you. I can't remember the terms but I know you could get a personal assistant or even someone to come in and make dinners. Get onto them and stress how utterly desperate you are ♥️.

What a lovely post from someone who so clearly 'gets it'. I hope the OP can take comfort from your solidarity. You speak a great deal of sense and absolutely spot on about the gaslighting.

This is where we are. So called 'support', the only interest is using funding to keep and create jobs, that's where the money goes - it's a bloody racket. Meanwhile those in need like the OP are desperate. There are people who get it OP and I hope you and your daughter get the help you need.

Have you been assessed for autism op
You need a social worker for yourself and one for your child
Your social worker could apply to get you a carer to come in to the home and help you get up and washed and dressed ,..one for your daughter could do the same .we had a get care agency for my son of 9 hours a week ,so it does exist ,you just need to keep pushing for it
Have you applied for DLA for DD and Pip for yourself..again ,no one can do it for you
You need a childminder,get one to take her to school and pick her up ,then you wouldn't need to rush in a morning and you could pick her up after her tea in an evening
She needs an autism diagnosis..no one else but you can push for that ,
EDS goes with autism..if you had a diagnosis it might open up more help

Op,
it sounds like an advocate would be of use for you.
ask your GP/health visitor/early years about social prescribing. A Multi disciplinary meeting between health and social care could also help join the dots.

1. an easy win for school to provide after school help daily if required.
2. meals provided that are easy to prepare/heat.
3. assistance with claiming Pip or other benefits/form filling
4. finances to help pay for cleaner/home help to free your limited energy up for your child

im so sorry this help isn’t easier to access, but with the right worker you could find these help you immensely.

she was on autism pathway for 1.5 years but they wouldn't give her the diagnosis and closed the case. I can't force them to think she's got it, or re-open the case. i can't afford private assessment. she's only got a selective mutism diagnosis, but school keep saying 'she's fine, she's fine'. school tell early help all the issues are with me and my dd is fine. she wet herself at holiday club yesterday as too scared to ask someone to ask the teacher to take her to the toilet. i do tell them to keep on top of it and keep asking her, but they didn't.

how do i get an advocate?

i can't even get an EDS diagnosis for myself.

i really do take comfort from it. a small lifeline.

I’m so sad for you op. I’m in Scotland but here adult social care would absolutely step in to help you meet the demands of parenting. It’s one of our essential needs. It might be clumsy and intrusive but it would help. Can you phone gingerbread advice line for help? I do think u need someone to advocate for you. It’s very hard to push services to take responsibility for providing help. Do you still have a health visitor?

Your doctor clearly does not have enough knowledge of what occupational therapy can do for people. Your adult social services department should be able to refer you. Yes they can provide equipment and arrange major adaptions of your home but they also look at fatigue management, pacing, pain management, anxiety management, sleep management etc. they basically want to enable you to live as independently as possible. It could be by having some minor adaptations or suggestions made you will be more independent in your everyday activities, I'm thinking things like a kettle tipper, ensuring regularly used items are at a height suited for your range of movement from the shoulders, ensuring you have a stool to sit on when cooking etc.

Please request an urgent social services assessment for yourself. You need practical help to parent. I'm sorry this is happening to you.

Keep going back to your doctor,keep telling your doctor about her behaviour
Push push and push .
My doctor phoned CAMHs and got my son on the list to be assessed
Keep telling school she is masking at school ...do they not understand autism presents differently in girls ,she is not going to be your typical 5 year old boy with it
You need a tac ..or TAF ..or what ever they now call it ,multi agency meeting.either school or social can call it ...but call it they must

You need a diagnosis from your doctor of EDS ..see a different doctor and a different doctor untill someone listens
It's about banging on every door untill one opens

You also need a social worker for you
Ring them and ask for an assessment,tell them you think you have autism and EDS show them how you are struggling,you need someone from adult social care to help you fight your corner

https://www.kentandmedway.icb.nhs.uk/mental-wellbeing-information-hub/social-prescribing

try here on Monday (sorry I don’t think they are open at weekends).

as yr child is young, you may not have developed school friendships, when my child was at primary school, the school was very good at looking out for families struggling and helping. Sorry that’s not happening for you.
a good social prescriber can assist in getting you additional help, claim benefits etc. pip doesn’t need a diagnosis just a need.
also if child is struggling after school it’s possible she is masking all day and then releasing all the emotions.

an advocate can be any professional or voluntary worker/friend, who can help make things happen.

im so sorry you have to fight still when you are in such a difficult place. Some simple wins can make a huge difference (like after school club), social services can also make that happen.

Ok, mum is a dud. She will do for the nights or days you are desperate. It won't be enough to damage her. But I see she will make you feel worse if you use her too much. Bless you.

I wrote about Adult Social Care. It was 5 years ago I accessed this extra funding from them. You have hypermobility diagnosed and you can reference your mental health. Plus you know with certainty your daughter is Autistic but are facing the hurdles everyone is familiar with ref a diagnosis. Be firm in your knowing she is Autistic. She is OP. It's very clear to me. This story is almost textbook. Some will tell you it's just the home life or stress making her hyperactive etc and she isn't. Don't listen to it.

I think it was called a personal care budget via Adult Social Care. I remember I had some lady clean, she made food and I asked her to take my son to the park. I just put a post on FB. It all happened very fast I remember. I kept calling them and leaving messages.

Home start were ok. I met a lovely lady who came once a week for 2 hours and played with my son. That helped alot. We are still friends.

Get a PIP application sent to you. Remember it's about how you struggle every day rather than what your conditions are.

I'd also email the school. Can they please let you know of any financial support or discount you can access towards after school club. Even if it's on loan and you pay them at end of month.

Citizens Advice can help you fill out PIP forms.

Get that iPad / TV out and just feel comfort knowing that autistic kids regulate this way. On the adult autistic groups they are mostly huge advocates of screen time / gaming. It actually helps. It's not the same as a Neuro typical child. Mine can spend days on the gaming. He loves it. Don't worry about that for now. You are not damaging her

I am truly sorry you are feeling like this. It seems you are reaching out for help but sadly are being turned away. Most systems in the UK now are at breaking point. Not enough money / trained staff etc. however that does not help you or your DD
if she is at school in the UK and so she is four she will be in reception. Still very young to be at school she is probably not only overwhelmed with school but seeing her mummy in pain. It is heart breaking to see you have no outside help and if I was closer I would offer you some respite, just for the day so you can rest and be ready to make some choices with a clear head. Are you a member of a church. ? I know from experience we have a lot of lovely older ladies in our village who have a church group and are always helping out mums.
it seems you have exhausted all avenues and it is concerning when you mention the suicide word. Please please contact the Samaritans. Please call 111 and explain how you are feeling. You are not alone. You just need a bit of help.
virtual hugs

Oh OP, I'm feeling so angry on your behalf. You are trying so hard and have been let down so badly. It shouldn't have to be like this.

Just a couple of practical points:

If you're on UC you should be able to get 80% of your childcare paid for- including after school club.

Re veggie ready meals- Lidl seem to have a much better offering than other supermarkets.

Social work will not "put your child in care" for a bit because you want respite. I sympathise with your difficulties but it is a last resort and respite is also part of an assessed care package and currently under resourced. Your child would be very much affected by being in local authority care and away from you. It is really not a thing that social work take lightly as it has a huge impact on the child. I think looking for someone to care for child ( even your mum, with her fags ) would be alot less harmful than her being removed from your care by social services . I would seriously think about what you are doing . I also would stress that social work children and families are there to keep families together. Maybe you need more community based supports.They are not going to come out tonight and remove your child and thank God because that would be completely horrendous for her.