Please help. Desperate

[Offred]

DD10 has been in crisis now for 14 months. I have repeatedly, over and over, asked for help from anyone and everyone. Most people are convinced she is ASD now and we are almost about to get a diagnosis. She has DLA at the higher rate for care and lower for mobility since June last year.

I have always had concerns re what I now know to be social communication and sensory issues etc and have been back and forth to school for her entire school career but was always told they don't see anything in school.

Feb last year she didn't meet the criteria for early help or Camhs despite running away, trying to kill herself (running into traffic) and self harm. So I asked but we got nothing. She was referred to paed but appointment did not come until June.

March she started refusing school so I involved EWO.

School refused to take it seriously and to date have still not contacted EW.

May she attacked me and her older brother with a knife and ended up in normal paeds ward over the bank holiday as CAMHS crisis team don't work bank holidays. When she came home she was so anxious about being out of the hospital that she wouldn't leave her bedroom and would go to the toilet on the floor.

CAMHS basically assessed her then and became involved.

Social care last year mistakenly became involved after the hospital admission in part due to having someone else's notes in my file (mum with serious addiction, children in care of grandparent, previous social care involvement) and they promised the world then disappeared off the face of the planet and collapsed the case in Nov without doing anything and without telling me or anyone else who had been included (school, EWO etc).

SW's 'helpful' advice was to get back with my EA ex even though they had stopped him seeing her due to concerns about EA towards her and to rely on my parents who beat me, chucked me out at 16 and are extremely toxic for 'help' and that I needed to phone the police when she is dangerous.

I tried to do this once, but when the police came and said I was not safe if they left her here after violent episode. My mum came and had a half hour screaming fit at the policeman for 'ruining my relationship with my granddaughter' by expecting her to take her home when she didn't want to go. So I will not put us all through that again.

School have consistently denied any issues in school and refused to make referrals to OT, SLT and EP. They have allowed her to run away from school twice (buzzed her out of two doors). Have consistently told everyone that 'we are aware of problems at home but we see no issues at school', have punished her for social communication needs/sensory issues as they thought she was being deliberately naughty and filled in a questionnaire which said the same ASD traits at home and at school. They also refused to allow me to even speak to the SENCO as 'she is not failing academically and social and emotional needs do not come under SEN'. They have promised various things and then not done them which finally put an end to DD going to school as she has now got severe school phobia.

CAMHS refused to give her therapy at home (although they are able to) and discharged her without any therapy in Nov. All they would do was get me (and not her dad) to go in for hour long appointments where they gave me unhelpful parenting advice (that I have always done and that I know doesn't work for her) and told me to go on parenting courses that are not appropriate for children with ASD.

Her attendance is at 20% and she has not been in school at all since the beginning of the year.

In October the LA tried a managed transfer to another school but without any support this failed.

In December I told the school re the questionnaire and they made referrals to OT/SLT but not EP.

In January the SENCO was finally involved and I told them I would not allow DD to come back to school until EP had assessed her. When EP got the referral she could not understand how she had not been involved up until now and has seen her as an urgent case.

The difficulty is that now DD does not trust anyone and will not engage at all. She now has a wellbeing worker (I involved) who is trying her best.

On Sunday she threatened children in the neighbourhood with a knife so I called police. Police called back and said they won't come and I need to take knife off her. They said call an ambulance. I did, they said they would not come due to knife as their safety would be at risk. I then tried the emergency duty team but the number had changed and had not been updated on their contact details. I called NSPCC who called police and told them they HAD to come.

Several referrals have now gone in to social care and I have requested a needs assessment under the children act but they have said they won't do that as she doesn't have a diagnosis, despite DLA and everything else that has been going on.

It has been kicked back down to early help who are also saying they can't help without a diagnosis.

I have MS and three other children and I literally cannot cope anymore.

Oh and yesterday she attacked my son and his friend and then ran away and had to be brought back by the police. Today she has just spent an hour attacking me and her brother and screaming that she is going to kill herself and strangle me in my sleep.

Emergency duty team said yesterday it was not an emergency and nothing they could do.

First of all you need to start hiding your knives and anything else that can be used as a weapon, then I suggest when she has her next meltdown,you phone an ambulance and the police when she is beating you. or get her in the car and take her to A&E.

You are not alone xxx

have you got a local carers centre? i have found these invaulable, through those I went on a challenging behaviour course which helped immmensley, if not look for a childrens centre that is more for children with Sen, get signposted to as many places as you can.

I would strongly suggest you contact solicitors with expertise in education, community care and mental health - it sounds highly likely that they may be able to take action in your child's name under legal aid. I think someone like Simpson Millar or Irwin Mitchell would be your best bet.

However, as you won't now get them until Tuesday, I'm afraid all I can think of is to keep calling the police and social services. It is utterly ridiculous for them to say that a child attacking others and threatening suicide does not constitute an emergency. It sounds like it would also be worth getting the NSPCC involved again.

Has the EP done a report? Social services are wrong to suggest that your daughter does not qualify for a care assessment because she hasn't got a diagnosis, but you do need something that backs up the fact that she is in effect disabled and therefore technically a child in need under the Children Act 1989.

I agree with calling 999 everytime. You are not police or medically trained.

Then email your local MP and tell them about what's happened and what you need.

Also complain to children's services and state clearly and factually a timeline if events and state very clearly what you expect them to do.

Thanks for your replies.

I spoke to the NSPCC again tonight and they are making an additional referral to adult social care for me.

I have been offered a place on a specialist parenting course but I can't get to it due to mobility issues and not driving and the fact DD is permanently at home ATM with me and is not able to be looked after by anyone else or come with me. This has also meant though I have been offered free person centered counselling I can't access that either.

Muckypup - I have hidden the knives, locked them up etc she is hyper observant and always finds them or breaks the metal box to get to them. It's so hard. When she is not shouting at me she is observing everything I do.

EP is currently writing a report but is difficult as she is not in school and won't engage with her at all.

For some reason despite multiple reports from EP, SLT and wellbeing worker and higher rate care DLA she is apparently 'not disabled' because she doesn't have a diagnosis. I asked to submit a complaint this afternoon about the original handling and I plan on complaining about this too.

Wellbeing worker is also complaining and I have already threatened that I will be litigating if now response within 7 days as they always say they will call me and fail to do it.

And I have called the police every time but all they do is come and shout at her and make her meltdown worse and because I have called them so many times now I worry that is why they are starting to say they won't come.

And now she is saying she wants the police to come and take her to prison because she will be happier there. 🙄

I would be tempted to perhaps have a word with the police on the quiet and see if you can actually call her bluff? The trouble is sometimes Asd children can get controlling and by the sounds of what your saying, the police come and make her meltdown worst,yet she wants them to take her away to prison? The trouble is sometimes it can be really hard to suss them out.

The definition of disability under the Equality Act 2010 is that the person has a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on their ability to do normal daily activities. There is absolutely nothing in there that requires a diagnosis before someone can be accepted as disabled. Social Services are talking rubbish.

Wish i had words of wisdom but I don't. We like you were dismissed by social services because of lack of diagnosis but we did get some action by writing to the director of children's services. In our case the disabilities team and child protection team were infighting as to who should have responsibility. I have to say though after a few months they disappeared again.

We have a social worker! She is fab and came today. I blew up the LA phones all week and finally threatened them with litigation if they didn't do a needs assessment.

Such a relief!