Can anyone calm me down? I'm still quite angry.

[lacksdirection]

Probably just need a rant. DD is SN. She has no dx and getting a dx is proving very difficult, mainly because she doesn't tick the boxes IYSWIM.
She strongly presents as PDA. She has some sensory issues but not enough to be considered as SPD.

She attends a unit attached to a school because mainstream can't cope with her.
She attends the unit for less than 3 hours a day because the unit struggle too.
We have been back and forth to doctors and paediatricians for the last 5.5 years, but our health authority does not accept PDA as a condition and therefore won't diagnose.
DD has various professionals involved in her care, including support workers, specialist teachers, she has therapy, the EP is heavily involved, we have home school liaison workers.
I am on my own and spend 150 a week caring for DD. The other hours are spent travelling to and from the school unit and actually being at school.
We have been going round in circles for a number of years, trying to get DD the help she needs but it is frustratingly difficult because no one knows why DD behaves the way she does.

I can live with all of this but yesterday I was speaking to a member of my family who volunteers a lot at her children's school and she asked me how DD is. I briefly told her the latest developments and this is what has pissed me off.
She then spent 90 minutes on the phone telling me I needed to do more, I should be visiting residential schools for feedback even though I do not think residential school is the right place for DD right now, I should make an appointment to sit down with my MP, research the consultants outside of my area who can diagnose PDA and then apply for the funding myself, I should not be relying on the EP to do what he says he will and I should do it myself, I should be taking DD to SS and demanding respite and threatening to leave DD there until they give me help. I should be making a chronological list of every doctor, paediatrician, specialist and gather all reports to show to anyone I can make an appointment with, I should be DOING so much more because if I don't fight for DD, no one will!!

I spend my every waking hour either looking after DD or liaising with professionals, going to meetings, writing statements, having appointments with home support workers, arranging therapy sessions, taking DD to and from therapy sessions and much much more.
I am honestly not exaggerating when I say almost every waking hour is spent looking after DD or dealing with issues wrt DD.
I have no life.
Where does this relative think I am going to find the bloody time to spend hours more on the phone, on fruitless quests like visiting residential schools to ask advice on DD when they've never met her?

Now I feel like shit because I'm clearly not doing enough. This relative doesn't understand how fucking tired I am, how frustrating it can be to feel like you're getting nowhere fast and not being able to do everything on my own.
I know it shouldn't bother me that anyone thinks I am clearly not utilising the 16 hours a week effectively and I should be using every minute to Google more specialists and then email them, camp out at SS, stage a sit in at the MP's office, travel all over the sodding country looking for help as well as doing all of the things I already spend those 16 hours doing which in a typical week includes meeting with leader of unit to catch up on progress, meeting with home school liaison worker, meeting with home support worker, meeting with senco, telephone appointments with specialist teacher, liaising with therapy team, writing statements, arranging times for DD to go to soft play or park with the few friends she has left.
Of course, this is not enough according to this relative. I honestly can't remember the last time I drank a hot drink.
Now this relative has said they are coming to my house this week armed with as many phone numbers as possible for me to ring while she sits there.
I feel things are moving but slowly and yes there are frustrations and disappointments along the way which I deal with when they happen but I really truly cannot take on any more. I really can't. This relative just went on and on about how I should be fighting harder and harder for help and respite. I just wanted some support, not to be told I am obviously not doing enough and should be doing more.
Who is supposed to look after DD while I go to all of these meetings? Not this relative, that's for sure.

Yes, I am a rubbish mother.
Thank you for listening.

I don't understand how people who have not lived through this or anything similar seem to think they could do so much better than me.
She is clearly a far superior parent than I am.

So sorry you're going through this. I'm also sorry my question is not more supportive, but I have to ask... Your DD is entitled to 25 hours a week of education- what's going on? 16 hours a week is woefully inadequate. What do the LEA say about it?

And you relative is clearly clueless. It sounds like you are doing EVERYTHING for your DD. You know her best and what's best for her. Ignore.

DD only actually attends school for 13.75 hours a week (2hrs 45 mins per day) and 30 minutes of that is lunch.
The LEA haven't said anything directly to me. I was told that 2 hours a day is the minimum which is exactly how long the unit proposed when they realised they couldn't cope but I pushed for it to be extended so it now currently stands at 2hrs 45 mins a day and there are no plans to change it anytime soon.

I said 16 hours a week is the time I get to do things without DD because the majority of the time, DD is collected and returned from the unit via taxi.

I'm sorry, but that is appalling.

Your DD is entitled to 25 hours of education per week. If the unit cannot cope for more than 2 hours 45mins a day, then the LEA need to change her school to one which can cope, or put alternative provision in place for the remaining hours until she is receiving her full entitlement of 25 hours.

No wonder you are exhausted. How old is DD?

I am assuming that she has a statement- if so, how many hours of support is detailed on it?

Argh! I can relate to your frustration over the know it all relative. My mother is exactly the same. Thinks she knows it all but actually knows fuck all. She is a social worker and the other week was 'advising' me on how to parent DS. She has no experience or training with ASD at all so has no fucking clue on the strategies that should be used. I ignored her and went to the drop in session with the ASD family support service. Turns out what i was doing is right and confirmed that mother is a complete idiot and is best ignored.
There are some parents on here with PDA who have experienced similar struggles that you are going through so hopefully they will along soon to advise you.
FWIW i think it sounds like you are doing everything you can. You are engaging with professionals and trying to battle against numerous doors being slammed shut in your face simply because PDA is not widely recognised. None of that is your fault.
Threatening to leave DD at social services will not help at all. MP's are pretty much useless (been there, done that). Residential schools will not give you advice, they will only try and sell you a place at their school. You can email as many specialists at you want but most of them will invite you to an assessment as long as you pay for it.
Make sure you are busy whenever she offers come round (sounds like you will be anyway).

The other alternative is to treat her as a Secretary. So any info you don't have time to look through, delegate to her "as she so kindly offered to help", get her researching special schools, SN lawyers, sources of funding, any therapies, ways of funding your "wish list", or anything else you don't have time to give head space to.

One of the issues is that DD does not have a statement at present. She was getting 1 to 1 support whilst at mainstream for 3 hours a day but they could not cope and the 1 to 1 was struggling and actually told the school she was afraid of DD.

I was confused by the statementing process because DD is on the 'one plan' scheme and I was told that statements were becoming obsolete and if your child was on the 'one plan' which DD is, this was akin to a statement.

I have since discovered this is not true and so during the summer holidays, an application was made for a statement, however a statutory assessment was declined based on DD now attending the behavioural unit.
There is a new EP on the scene now and he was very concerned to hear that DD doesn't have a statement and that we were turned down. He is now gathering all of the information and has appealed this week in the strongest possible terms. He is confident we will be issued with a statement after this appeal. So the information has been sent off and we wait now.
My relative says I cannot rely on the EP to collate all of the reports and assessments because he does have other children to deal with you know.
The EP is gravely concerned that if the placement at the unit breaks down, because DD does not yet have a statement, there is very few options left open if it breaks down.
I believe this new EP will make the appeal because he was genuinely shocked that DD has no statement.

DD is 6 btw.

fairgame Thank you for making me see I am not alone. I related to everything you said. My relative is definitely a know it all and on past experience, does not always secure the best results.
She has caused a lot of problems before for other people as well as myself because she knows best. It is actually refreshing to read your post.

Thank you to everyone else. I am learning things I didn't know.

I honestly didn't realise DD is entitled to 25 hours a week of education. I am not clear of what DD is entitled to so any information is extremely helpful.

Oh my goodness, I can see why the EP is appalled.

Ok, have a look at this document which sets out the duty of the LEA to provide full time education for all children. At six years old, your DD is entitled to 21 hours per week.

This is an illegal exclusion. You would be within your rights to tell the school that, as of Monday, she will be attending full time. I would strongly urge you to contact IPSEA and/or get some legal advice. It may be appropriate to contact the LGO.

"however a statutory assessment was declined based on DD now attending the behavioural unit."

This is disgraceful. Did they know that she is only attending part time? What do they plan to do if she is excluded from the unit or when she moves on to secondary school? The fact that the behavioural unit cannot cope with her full-time is reason enough alone for a statutory assessment.

I'm sorry to focus on this issue, but it sounds as if the school are taking advantage of you, and failing in their statutory duties.

Exclusions guidance- very wordy, but worth a read.

Section 3.12 clearly states:

[It is] unlawful to exclude a pupil simply because they have additional needs or a disability which the school feel it is unable to meet

IPSEA

Goog god! Just unbelievable

You like so any of us have no room for extra stress like relatives in your life.

Tell her you don't understand the process, your so glad she asked. Can she do it for you. Point out that any appeal can only be raised via you so can she go off, collate then hand it all to you

Lock your door then ignore

I would hope your ep doesn't let you down

Definitely contact IPSEA or SEN:SOS, at least if you can get the education side of things sorted then that's one less thing to worry about. If she can't even attend a behavioural unit full time then she definitely needs a statement and probably a placement in a special school whether it be state or independent.
Do you get DLA for your daughter? If not apply asap.
Also if you are on benefits or a low income you can apply for legal aid to access a solicitor for any special educational needs appeal that you might have to lodge e.g. if they refuse to assess or issue a statement.
Have you had a letter saying that they are refusing to assess and if so how long ago because you only get 2 months from the date you received the letter to lodge an appeal with SENDIST.
That needs to be looked at asap though, you don't want to lose your right to appeal.
There is some information on this factsheet about refusal to assess.
www.sossen.org.uk/information_sheets/website_2.6.2.pdf

If your relative has motivated you to post here, then she has done you a huge favour

Don't worry about not understanding an enormously complicated system - no one knows unless they need to know. But also one thing that you learn, usually with great pain, is that anybody with an 'official' role will almost certainly let you down (LA and NHS) so we prefer their support but recognise their structural powerlessness. The good guys try but are dismissed commonly. DS2 has just received a statement where the LA EP report was largely ignored. Unfortunately, this is normal.

Keep posting here and you will get the help and support you need to get your DD the support she is entitled to.

I spent years firefighting and being strung along with DS1 before I found this board and started doing things differently. The thing is that it takes longer to 'cope' with everyday crisis than it does to get DD and you what you need to prevent all your energies being taken up by crisis management. DD needing support is not a reflection of you but the officials will let the run yourself ragged and then say that you don't need support because you are coping.

You have been invited to play a game of poker (or SEN) and nobody has told you the rules!

As a unit finds it difficult to cope with dc for more than a few hours a day, IMO you should ask Children's Social Services for a core assessment. The critieria for an assessment are deliberately broad - don't listen if Social Services tell you that your dc does not meet the criteria. They don't know that, until they have done the assessment. At the end of it, they will hopefully produce a care plan - and often supporting a child of additional needs, means supporting the family. You could get additional help with her in the holidays, access to special playschemes, respite, etc.

The new EHC plans contain a social care element, but that cannot be appealed at the Tribunal (only the education part). It runs in parallel to the initial and core assessment system, but there is case law on that; legal aid for dc (assuming they have no assets or income except benefits) - so you might as well go down the core assessment route for now.

Relative are 'crap' my parents in law know everything about my ds who has Aspergers. They cancel having him at a moments notice yet will drop everything to help with my Dd nothing is to much trouble then! He is begining to notice himself and says I'm I really going this time? I REALLY feel for him love him. He apparently gives them no trouble yet first thing he says is Grandad shouted at me. His 'sleep pattern' or lack of it is awful and they are the only break I have, they refuse to believe there's anything wrong with my man.

Relative are 'crap' my parents in law know everything about my ds who has Aspergers. They cancel having him at a moments notice yet will drop everything to help with my Dd nothing is to much trouble then! He is begining to notice himself and says I'm I really going this time? I REALLY feel for him love him. He apparently gives them no trouble yet first thing he says is Grandad shouted at me. His 'sleep pattern' or lack of it is awful and they are the only break I have, they refuse to believe there's anything wrong with my man.

Relative are 'crap' my parents in law know everything about my ds who has Aspergers. They cancel having him at a moments notice yet will drop everything to help with my Dd nothing is to much trouble then! He is begining to notice himself and says I'm I really going this time? I REALLY feel for him love him. He apparently gives them no trouble yet first thing he says is Grandad shouted at me. His 'sleep pattern' or lack of it is awful and they are the only break I have, they refuse to believe there's anything wrong with my man.

Thank you everyone. A lot of very useful information on here. I've been given more useful information on here in 1 day than I've had from any professional in years. How wonderful but also how sad that useful information is so difficult to access.

The unit are struggling but that's not why DD is there for less than 3 hours a day. They say it's because DD can't cope with any longer because she gets tired. They say it's much more intense at the unit so DD is going to be more tired.
I don't think the unit is the right place for DD but it feels like a battle. The unit have never returned a child to anything other than mainstream before so it feels like they would feel like they had failed if DD moved on somewhere else, and while their feelings aren't my main concern, I feel their need to 'win' colours their opinion as to how much longer they feel they can cope, rather than what's best for DD IYSWIM. Also, don't want to appear rude but if DD is entitled to these assessments and more hours of education every week, why, out of all of the professionals DD and I are working with, have none of them pointed this out?

To the last poster who mentioned that your parents don't understand, I agree it's so frustrating. I also relate to the situation where they are your only source of support so it doesn't leave you with much of a choice does it? I feel exactly the same.

Sorry if this post doesn't make much sense. I'm multitasking atm.

We are within the time frame to appeal wrt the statementing.

tethersend I have looked at that document. It is an absolute eye opener!! I know this may seem like a stupid question but does the 21 hours apply all over the UK? I am in England.
Also, does the 21 hours include lunchtimes?
Also, who are the LGO?

The 21 hours is taught time so it won't apply to lunchtimes. The document covers England.
The LGO are the Local Government Ombudsman. They are the people you complain to about your local authority. So if your council are breaking the rules/law then you can complain to the LGO.
Definitely get the appeal in to SENDIST for the refusal to assess. A statement will open doors to specialist schools and also legally safeguard the support that your daughter needs.

Thanks fairgame.

That means DD is getting 11 hrs 15 minutes per week of education.

I'm definitely going to follow the advice here. The appeal was sent off last week so I am hoping to hear sooner rather than later.