to wonder why services aimed at helping children with SEN, i. e CDC, CAHMS so unkind and cruel to parents?

[staydazzling]

on the whole.... obviously some families will feel they have been well helped and supported but it is SUCH an exception, in any ASD, ADHD, PDA, ODD or other neurological differences in children i. e invisible SEN, are there so many horror stories about parents told straight up they are lying, to blame, or that child must have "attachment disorder" and thats before the parents who are dismissed and ignored by professionals feeling desperate and unheard for years, whats the mentality at play here? its almost Victorian in lacking in empathy and why as a society do we allow it?? its just an observation ive made combined my own experience and other peoples.

I work with children with SEND in a mainstream setting. Unfortunately, we have children with very obvious conditions but with parents who refuse to engage because they “don’t want the label” and, conversely, children who don’t have additional needs but their parents DO want the label for benefits etc. We have at least 20 children who would do so much better in hospital schools, specialist provisions and mental health facilities but there just aren’t the places. The system is absolutely soul destroying but I promise you, in my school at least, we are as frustrated as you are and doing our utmost to get your children the help they need. Unfortunately (and in some cases, tragically) the help is just not there. It is a national scandal.

We haven't had the star chart suggestions, we have instead been given some ground breaking advice never considered previously.

"Drum roll please"

'Let them take it in turns to choose a TV program' (in response to DS's violence towards DD over the TV)

TeamUnicorn up there with the classic............"just tell them not to".

DD's school (before she was excluded) were obsessed with routine charts as this would solve everything apparently. DD doesn't have a problem with understanding what she should be doing just no desire to actually do it. The CDC backed us up and pretty much told the school to back off with their parent blaming. Sticker charts are a waste of time time. DD is PDA profile and wants to do the right thing but anxiety gets in the way. Charts add another demand and don't work at all. But what would the parents know.

'Let them take it in turns to choose a TV program' (in response to DS's violence towards DD over the TV)

We had "have you tried telling him to stop it?" when we talked about what DS is like during an episode of sensory overload. It was offered as heartfelt advice as if we hadn't already tried that umpteen times already.

Personally I have had a good experience with CAMH’s.
As a practitioner I see how long and difficult the process is.

But I am a strong believer that we have a large amount of misdiagnosed children.
There’s the old nature vs nurture argument. Unfortunately some children are a product of their own environment. No diagnosis can help that, only parental support.

On the flip side I’ve seen children who are difficult to diagnose as their needs seem minor when observed and children who are waiting for weeks/months just to be observed by the Educational Psychologist.

I say it’s a mix of lack of funding and is dependent on the actual person you have dealing with the case, including all professionals involved.

@DefConOne

Yep more conflict and demands and expectations! Too overwhelming

We are paying a pittance into these services and demanding they fix all problems. I don't think it's fair to blame the staff for society's unwillingness to provide more. I imagine some of the parenting techniques suggested are exactly what has caused people to feel they're being told they're bad parents. The expensive, and often excellent services, will never be available to all unless we are all willing to pay more.

My son got a diagnosis of ADHD then 2 years later ASD. The waiting lists are ridiculously long but the diagnosis process itself was very quick. However now he has the diagnoses there is no further support whatsoever. Just a case of get on with it and muddle through the best we can.

CAMHS only, wish we hadn’t bothered. They have been no help at all and there is no help at school. I feel DC has been failed every step of the way-right from 18months old when HV responded to my concerns with “it’s learned behaviour”

DC is now so angry at having a label - that we, wrongly, thought would get us some help- that it has pretty much destroyed us all. I worry for the future.

I don't know. Most I've met have been judgemental bullies.

But I had the most horrendous experience. Of Paed's, camhs, everything.

Eventually I was told I "shouldn't have been allowed to have children". And accused of having munchausens.
Lost my children and we had to fight to get them back. Good job both my parents are retired senior social workers, else I'd have been screwed even worse!

Has scarred me. I'll never be the same.

When I did a data request from school and hospital and social services, like a pp, I found endless lies and false information, that I was shocked at.

My specialist lawyer friend read my case and said she was horrified.

Reading with interest about requesting data. Might just do this.

My experience has been pretty positive but I reckon it's only as DS has severe epilepsy and the psychiatrists and psychologists at the neurology unit were/ are excellent. They referred him onto CAHMS who have been fair enough but the medication given for his adhd made him worse. He's now off it and we cope best we can. They did say that we wouldn't need the parenting course as we were doing all the things they would suggest but there was nothing else they could provide.

School are great ( primary) but I'm not looking forward to secondary. All I know is that I won't send him to the school my older DC go to: too big and too focused on academics.

It's so hard. and to all of us fighting the fight n

You are right to feel that way OP - and every 'story' is different but there is a definate disconnect throughout the SN/SEN systems.

So called 'partnership working' is really just a theory that can't work properly because Health/Camhs and Education/SEN work completely differently and are really independent of each other.

Although there is an acceptance that ASD (in DS's case) is a real thing not caused by 'parenting', the 'blame' cast on parents is also a 'real' thing too. I even found this in the Indie SS with an ASD Unit - after many years I became a Governor and the 'basis' of everything was they were providing a 'better' environment because parents had failed.

However, throughout the many years, I found many good people - professionals included - but I had to mostly seek them out, and somehow we have got through that 'educational prism'.

We are now 'transitioning' towards adulthood - with very little help and face different 'judgements' now. I'm so thick-skinned but I do still worry every day about the future - how will ds cope when I'm too old to keep going like I've had to so far; I'm pretty knackered now. But still going.....

The SN Boards here are really great for advice and support.

But if your child is just seen as acting out, it is inevitable that your parenting will be questioned. But no one joins up any history. If they did, they would see that I had so much help from my HV, sleep clinic, sure start, school, GP but when I got to CAHMS it was like it was all irrelevant. If a parent goes to their GP and asks for a referral for support, they are then either treated like it is imaginary or just your parenting. I have another child with no behavioural issues. No one ever asked

I'm on an ME/CFS page on FB, a lady today has taken her daughter to be assessed for ME/CFS at my local clinic, the recommendations they have given her are that her daughter is to be forced to get up & go to bed at prescribed times each day, no sleeping during the day, prescribed exercise & activities during the day. If she has got better by the next appointment she hasn't got ME/CFS & if she has got worse, she hasn't got ME/CFS & will be referred to adolescent psychology. What they have prescribed is against nice recommendations & totally wrong for anyone who could be suffering from
ME/CFS, if she is referred to adolescent psychology she will be waiting a minimum of 3 years for an appointment, will be 19 & have to then be referred to adult psychology, how can this be right & ethical?

I had a horrendous time getting my eldest diagnosed. I first saw a health visitor with concerns when dc was 8 months old. It was clear to me (as someone who had quite literally never touched a baby before having my own, so no idea about development etc) that she wasn’t developing typically.

I was made to feel as though I was rejecting my baby, that I was constantly trying to find fault with her, that I was in the wrong for daring to question whether something was wrong. It tipped me over into depression, which took me years to recover from (and of purse I was having to cope with a severely disabled toddler at the same time).

It still takes my breath away when I look back, just how much I was passed around from pillar to post, while dd1’s needs were totally overlooked (by 18 months, her only interest was to sit scratching the wall until her fingers bled; she made a hole in the wall eventually).

Then I had dc2, and rather than put myself through all that again, I just coped (significant needs).

Then dc3, some years later. Having had to seek a late diagnosis for dc2, which was no walk in the park - why now? How come you can’t just cope anymore? - I thought I’d go back to early intervention for dc3.

The dx route was so easy that I ended up paranoid and suspicious because it couldn’t be that easy (dc3 is the least disabled child). I continually convinced myself that dc3 would be discharged at each appointment, and was utterly confused and wrongfooted when they kept him on the books.

In all, I have spent 7 years of my dc’s childhoods constantly second guessing myself, feeling I’m the one out of step, that I’m wrong to be chasing ‘labels’, that I’m trying to get some kind of advantage (hollow laugh) for my dc. And that just getting the diagnoses for each of them.

Don’t get me started on yet more wasted years trying to actually get any kind of services.

The day that dd1 finally got her SN school placement, after 3 years of legal wrangling over her Statement (as it was) - this for a child with no functional language, no meaningful social interaction, and no play skills at all - I felt relieved, because at least some part of me could go back to being ‘just’ mum, rather than spending the majority of my time chasing up inadequate services, and educating he people gatekeeping those services as to why their blanket policies were illegal - time that would have been far better spent with my children!

I had the education psychologist transcribed exactly what she believes is physically wrong with my son sent it to occupational therapy they sent me a questionnaire asking if he was full term baby then rejected him because of lack of evidence he is ten and has zero balance throwing ability cant hop walks like a puppet with his strings cut he is very bendy actually he is too bendy he needs some help but they wknt even look at him

My other son has special needs but they have delayed his echp and the fact that they have supported his salt is now working against us he was referred to peads 18 months ago they still haven't been in touch he now has five personalities to cope with daily life and school because he cant cope with the workload education wise he is nursery he is actually going to year two this year and is one of the oldest children in his class

The system is broken

The CAHMS worker we saw lied, blatantly lied.
Dd hit me it the face in front of her and she said it didn't happen.
Ill never forgive them for that.

It's all my fault because I'm anxious and my kids feed off of that.

See it in meetings with 'professionals' and the phrasing they use, 'mum's anxious about ...' as opposed to 'the school have raised concerns about...'

@IHaveBrilloHair that's awful 😡

Just to give an alternate view; working as a safeguarding social worker I can honestly say that many, many of the children who were discussed at child protection conference, the parents were adamant that the children had ADHD (mainly) or sometimes ASD. Now there were a handful where they did, or where there were signs of potential conditions and as part of my job I genuinely did push for assessments and support. But for every one where there were genuine SEN issues there were 10 of parents claiming that child X was aggressive because of ADHD or lacked empathy because of ASD. When in reality that child had carers who were aggressive or ignored their needs and that was far more likely to be the cause of that child's difficulties. I do think that a lot of those parents felt they had little influence over their children and genuinely didn't understand/believe the difference that a change of parenting style or environment can produce in a child. Parenting is hard and they did care for their kids, and often were doing so in difficult circumstances. But it does mean that a lot of professionals in this field are used to many interactions with families where there are no SEN needs.

What hope is there when alleged professionals use the term 'label' for a medical diagnosis?

It's so demeaning, as though the medical diagnosis, often done by a team of professionals over several appointments in different locations of what amounts to a serious lifelong disabling condition is worthless, treated with the same amount of consideration as something you'd stick on a jar of jam.

@IndianaMoleWoman

children who don’t have additional needs but their parents DO want the label for benefits etc

DLA is awarded based on a child's needs in comparison to their peers, it's not based on a dx.
Professionals don't diagnose AN just because the parents want them to, the testing and scoring is quite a rigorous procedure and involves some parental input but mostly nursery or teacher's observations and GP's records and observations to get on the ever-lengthening waiting list for assessment.

Not all children who are assessed for AN receive a dx, many are found to have traits, but those do not cause a dx to be given, here's a quick overview of the diagnostic process and criteria for ASD www.autism.org.uk/about/diagnosis/criteria-changes.aspx

Many professionals who provide diagnostic services for the NHS also work in their own private practice. It's common for people to say that if someone pays for an assessment then a child is automatically given a diagnosis, but this is yet another ridiculous myth/urban legend. NO medical professional is going to risk their reputation by giving any dx on demand or issue a dx for payment.

You say work with children with SEND and think you can tell which children have SEND and which don't. That is so wrong, until you are qualified to diagnose, you shouldn't be expressing opinions like that.
For all you know, the parents of children who "want a dx for the benefits" MAY have a child who is academically not behind and masks at school all day therefore school "see nothing" and say the child is "fine" yet the parent has to deal with the daily after-school meltdowns and evenings and weekends full of anxiety driven full-on behaviour mainly caused by schools not recognising that child's needs because they are so blinkered and dismissive.

SEND is a field where so many people who are asked to provide observations for a diagnosis think they are qualified to give a "professional" opinion to parents, yet they really aren't.

Many parents don't pursue an assessment for their child because SENCO or teacher or a TA or their GP has told them their child does not have that condition and it's only in later years when the undiagnosed child falls apart that the parent realises the "professional" who said that wasn't anywhere near qualified to make that statement. Yet that can cause untold problems for that child in their future, which would not have occurred had an assessment been given when the parents noticed their child was very different to their peers.
But of course, all the "professionals" think they know so much better than the parents and insist a child's "poor behaviour" is caused by poor parenting.

Here's a big pat on the back to all parents who have had to fight their way through this awful maze to get the help their children deserve.

@BlankTimes 👏