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.

im. sorry undersi thats terrible

I had to go through counselling when I was a teen and my mum and chaotic home life was the problem - yet she denied this even when multiple professionals raised this. This has affected our relationship as her denial has always hurt. Remember just because you can’t see a problem doesn’t mean there isn’t one and most professionals do take the side of the child because it’s easy for adults to overlook major and minor things when they’re busy.

Ds has very low mood. I've been told because he is being assessed for autism and is not suicidal then he won't meet any kind of threshold for camhs. I've also been told that if a camhs referral was done it would be rejected because of his possible asd. In the meantime Ds has declined over the last few months. He wishes he had never been born.

He gets 20mins a week to talk to a teaching assistant at school. It's not much time and at the moment he's struggling to express and communicate his difficulties to her. He tells her everything is fine.

I don't understand why professionals are arguing that the vast majority - for every 1 with SEN, tens without - what is that, around 90% of cases - are due to parenting rather than SEN? Where are DC with SEN referred then?

Why do you think IPSEA, SEN!SOS etc exist? How do you explain the huge increase in SEN tribunals? What about the vast increase in SEN DC out of school? These DC have a diagnosis - often after parents have been blamed, jumped through hoops etc.

I can understand jealousy of parents whose DC have more visible, obvious issues. I have experience of both sides at the same time - really fucks with your head. It was assumed that I was simultaneously exaggerating DS1's needs but in denial about DS2's needs. Different professionals were involved but I was just one, the same person with 2 DC. Even at the same school I was assumed to be both exaggerating and simultaneously in denial because of different presentations and obvious speech delay in one case. I could literally have one meeting where I was treated as an MBP momma and then walk into another where I was treated as if in denial.

What do you think we parents care about. Being right or our DC's well being? I would love it all to have been my fault because then I would have the power to fix it. At the very least professionals can work in partnership with parents and so be on the side of DC and parents advocating for them.

The thing is.
Attachment disorder exists as does crap parenting and fabricated illness (munchausen by proxy) albeit rare. Those conditions will form part of the differential diagnosis and the best plan is to work together with professionals rather than perceiving them as the enemy. If parents are spikey and weird it is more likely to raise concerns than if you calmly explain and discuss the problems. That said, there are some crap professionals who jump to conclusions, are difficult, narrow minded and shit at their jobs.

Very long story, very short.
One report written about us was that DD was overly disciplined, and didn't have enough discipline, in the same report
An independent worker looked at it and was horrified.

for everyone who is struggling. It's scandalous.

@Teddybear45

I also had counselling as a teen due to a poor childhood which I sought myself

What parents here like me are saying is that we reach out for help and are told it’s our fault and then our children are still not even offered anything and turned away
If so many children have these poor parents then why are they not being supported as a child? And turned away? That does not add up to me. IF someone saw my DD and felt I was causing this then the least I would expect is some support for DD and some education for me. Seems they are more than happy to send the DC Back home with these allegedly bad parents to disappear from the system

YANBU! We have had to seek treatment for our son (HFA, ADHD, OCD) abroad because the 'services' as such utter shit in the UK just now. I'm sick of fighting and fighting and our child being fobbed off.

Differential diagnosis - when applied without bias - starts with the most common potential cause of the presenting symptoms and rules them out before progressing to rarer causes

Therefore, ASD should be ruled out before suspecting a rare mental disorder such as MBP/FI.

Likewise, attachment disorder should not be the go to assumption without good reason - ie where there is no PND, exclusively BF baby past 6 months, SAHM, fulll immunisation, HV etc check ups, baby groups etc or other co-indicators. Can you imagine the outcry if it were suggested that FF or being a working mum resulted in attachment disorder? Symptoms of ASD should not be considered as attachment disorder. This is no better than the refrigerator mother theory. Attachment is always to the mother rather than the father.

I agree with Bored40. I have seen a lot of people who think their parenting is good enough when it really isn't, but they just can't see it because the things they do are entrenched. I've also heard people openly say they need a diagnosis to help their benefits. As with many things in life this group spoil it for all the people in genuine need.

I agree with you OP. Dd1 developed quite a bad phobia at the age of 7 and we were referred to CAMHs. I felt that the woman we saw was desperate to find something in our parenting that had caused it.
8 years on my dh has since died, but me and my dds aged 12 and 15 have a harmonious relationship. We get on well and the dds are happy and doing well at school. Dds form tutor said she thinks dd has coped as well as she has with the death of her father because we have a good relationship. I don't think her phobia (now got over) was caused by terrible parenting!

PookieDo makes an excellent point, even if EVERY parent they thought was to blame, its not an excuse to then just do nothing and offer no support when you are being paid a salary to do a job.

It's terrible. Try being autistic and trying to obtain help from such people. They lie, manipulate, deny, accuse and generally run rings round you. They gave me and ds1 (pda) the runaround for 13 years before I eventually managed to obtain help via a pure fluke event. It caused him no end of distress and he's now on medication to help him.

We didn't even bother trying with ds2 (aspergers). I don't have words bad enough to describe our local camhs. The idiot psychologist was peddling the usual attachment theory rubbish as well. I've since learned that's a common tactic.

ineedaknittedhat thats terrible they should be bending over backwards to help you.

I have seen a lot of people who think their parenting is good enough when it really isn't but they just can't see it Can you please list some of examples of not good enough? Genuinely interested. Also heard people openly say they need a diagnosis to help their benefits. What's wrong with that?

My experience is that dh and I have been told of several times we are fantastic parents both by the professionals diagnosing DS, by his nursery school, his primary school and recently by his secondary school. This despite having a child who has recently received his first short term external excusion.

I know this is not really true for me ( though DH is a very good parent ) as I am pretty certain I deal with my own ADHD so have a short temper myself that I have to make gargantuan efforts to control.

There has been a few comments by professionals that have hurt my feelings a bit but I have taken them on board and tried to honestly see if what was being said was true. Sometimes, in fact often, it was true.

DH and are are however deliberately unconfrontaional . We never ever say the school needs to do more when things go wrong, instead we point out tactfully and without blame where we think the problem stems from and how we/ the school together might address it whilst conceding that DSs behaviour is not always easy to manage. We always mention we understand how it is important for them to keep all their children happy. A lot of it is about empathising with their task, which frankly is not an easy one. When they make mistakes, we don't go in all guns blazing, we want accountability but we have quite a high threshold for what we would get really angry with a school about . In return DS has been helped rather than blamed most of the time. In every case we have prioritised building a good relationship with the professionals.

I too have been accused of being overbearing in front of DS, it.hurt at the time but I also openly said, that they were probably right but that I was doing my best and would try not.to do.that as much in future.

Therefore, ASD should be ruled out before suspecting a rare mental disorder such as MBP/FI.

ITA - why don’t the professionals just read the paperwork, sit and do an assessment, using ADOS, etc objectively and then form a conclusion? If they don’t find ASD, ADHD, etc then start to look for other explanations?

When I took DD1 to speech therapists for an assessment, I had to always fill in a form about her early milestones; but at the assessment itself, they did CELF, BPVS, TROG, Test of Word Finding and whatever other tests they thought appropriate. Then, they made a diagnosis - they didn’t start with the assumption it was a language delay, because we never talked to her, when her siblings could talk for England!

I never encountered the attitudes pp talk about at the CDC or CAMHS, because the speech therapy reports always spelt out a significant language disorder; and once under the CDC, the OT reports talked about severe dyspraxia! She developed phobias at age 4, and CAMHS put them down to the fact, she was frightened in a world she did not understand, she could not label her emotions and she was aware she was different!

However, DD2 has encountered lying, manipulation, denial, bullying, etc in adult mental health services! She’s been to meetings where there was two of them to one of her, and they just denied what they said to her later - and made out it’s all in her mind, because she’s mentally ill!

That's awful re dd2 MontStMichel. We had the same but with SS 15 years ago. Crucified and traumatised the whole family, none of us have ever got over it. I'm currently being treated for ptsd all these years later. Still can't pass the SS buildings in town without shaking and feeling sick!

@singlewhite guineapig

...the best plan is to work together with professionals rather than perceiving them as the enemy. If parents are spikey and weird it is more likely to raise concerns than if you calmly explain and discuss the problems. That said, there are some crap professionals who jump to conclusions, are difficult, narrow minded and shit at their jobs.

Well yes, most parents of children with SEN (or suspected SEN) want to work together with professionals, but the reason that is often difficult has been explained very well on this thread.

Accusations of making things up, exaggerating, being "too negative", too much/not enough discipline. Anxious parents (more frequently "mum is anxious about...") being seen as the root cause rather than parents' understandable concern about their child's development.

Professionals not reading reports so we have to explain our children's histories over and over again, often in front of the child.

I'm sure most of do want to calmly explain and discuss our children's issues, but frequently that isn't possible when we are being dismissed, our concerns minimised, told to go on basic parenting courses, told our anxious child can't be helped (even if suicidal) as they have ASD, and anxiety is part of that.

So forgive us if we sometimes come across as "spikey and weird".

I knew I was coming across as anxious and overbearing but I waited 9 months from an assessment that strongly indicated ADHD and PDA on questionnaires. My child had also self harmed and we had no support. I had back up from school that she was an able student but had behavioural difficulties. She had some in school anger management sessions that I was never included in. I also never got angry with the school and actually encouraged them to call and email me if she was having a very bad time to try to catch it before it went too far, I tried to advocate for her when she couldn’t express herself as well as agree with school rules and methods. She was on tutor report for about 2 years where she got feedback in every lesson so we could try to work out if there was a trigger (person, subject, time of day). I can’t really fault the school but they had 1500 pupils! So I asked CAHMS for help when I had tried everything else

Her school report for every single year says the same thing from age 5-16!

DD cannot seem to concentrate
DD is very easily distracted
DD often refuses to engage
DD’s mood dictates how the lesson will pan out
DD has abrupt and sometimes rude outbursts
DD is friendly and polite when she is calm
DD is isolated has no solid friendship groups and will not join in any extra curricular activies

Hello there, this thread is very apt / making me shake with dread!

I have an assessment for DS with CAMHS this coming Thursday. Any tips for making it run as constructively as possible?

I’m already very upset and scared about the whole thing, due to the reasons we’re going, and the way both me & DS have been treated by his school over the last year.

It’s for anxiety/depression, due to his past traumas and current vulnerable circumstances.

Does anyone know of CAMHS will even look at him?

Here’s the circs in brief:

DS has had a really tough start in life, which he seemed to be just about coping with / gradually recovering from although vulnerable still, when his f*cking school decided to let him be mercilessly bullied all this academic year, and behave very badly towards him themselves as adults too... failing him badly, basically, it’s been awful. And so this has catapulted him into a rapid decline in mental health, and he’s become extremely anxious, lacking in self confidence, (& doesn’t trust in adults in authority at all now due to the way the school have behaved).

Wont go into the historical stuff & current stuff that makes him vulnerable, but, he should have been treated as a vulnerable child throughout. Which didn’t happen.

The reason I’m so shaken up and in amisdle about this CAMHS appointment is that I’ve been disbelieved and discredited by the school so badly and it’s really left a mark on me.

It culminated in at Easter the school got ss involved because apparently... I’m disabled therefore (naturally!) I was making up that DS is unhappy at school, and that’s a sign I’m either ‘disabled so not coping’ or just plain abusing my child, or perhaps a crazed fantasist ?!?!?! Basically it was because I wouldn’t go away although was extremely polite, kept pushing them for action and refused to be fobbed off.

Their move failed (thank god), as the social worker quickly realised that I’m a good parent (thank god thank god thank god), and DS is clearly very unhappy & anxious at school, and she wholly supports a school move. The SW has been really great tbh, and she agrees with me that DS needs help as he’s very anxious and desperate after being bullied for a year, and he now believes the bullying, especially due to the way the teachers behaved towards him throughout.

Hence the CAMHS appointment, or at least that was the original reason before it was piggybacked by the school.

Every new school near us is oversubscribed and I’m trying to get DS a school place on appeal and it’s taking AGES.

When I say ‘anxious’ I mean he gets physical symptoms from the anxiety eg migraines, diarrhoea, stomach ache & headaches, plus the insomnia, nightmares, panic attacks, where he’s rocking and repeating words over and over. Then there’s the self hatred & talking about wishing he was dead. Any tiny failure at doing something or petty frustration results in him throwing stuff across the room and screaming ‘I hate myself I hate myself I hate myself’ or ‘I’m crap I’m crap I’m a failure and shouldn’t carry on living’

He’s terrified of being on his own (like, phobic), he even comes with me into the toilet and sleeps with me now. I can’t leave him not even to go into a different room for a moment. Or when he’s having a strop or getting angry at me, it’s horrible because he’s trapped and he stands by the door wanting to run out and slam the door except he’s too scared... I’ve made him a hide hole in my room where he can storm off to but he’s too scared to even be there as he can’t see me. Another adult will do by the way! So it’s not about being scared cos I’m ill or anything quite so simple...

Meanwhile DS is starting to school refuse, but I’m too ill to have him off school / home tutored in September... so he had to go back to the awful school until he gets a new place.

So I went to a hideous meeting a few weeks ago at the old school, with the social worker as support, in order to get some stuff in place for sept-Oct at least get them to agree he has some needs... and oh boy did that meeting go wrong! I think the sw thought the school would behave better cos she was there, but nooo.

Upshot is the school have said they refuse to recognize DS has ANY needs at all (so they’re actually going backwards), unless CAMHS tell them specifically what those needs are ... and I think how to deal with them (?). And if the CAMHS report doesn’t say DS has any specific needs, that means DS has none and he won’t be given any ‘special treatment’... i feel they are holding this CAMHS Assessment over me as ‘proof’ about whether I’m lying or not, it’s hideous and terrifying.

So now the CAMHS Assessment has been coopted in the service of this fucking witch hunt. And my son will suffer.

And I’m really scared.

Oh well this is shit, big hugs and were all thinking of you, all i can suggest is be confident, easier said i know, tbh i know ur ill but i would remove him from that school.

I've also heard people openly say they need a diagnosis to help their benefits.

So, what's wrong with that? Oh and for your information you don't need a diagnosis to apply for DLA for a child, just proof of their needs. Lots of children with complex needs don't have an exact diagnosis (and some never will), but they have plenty of paperwork documenting their needs though. It's the same with statements and special needs support at school, they are (at least in theory anyway) needs based, they don't have to wait for a diagnosis before putting things in place - though the school and local authorities are happy to let people think they do.

If parents are spikey and weird it is more likely to raise concerns than if you calmly explain and discuss the problems. That said, there are some crap professionals who jump to conclusions, are difficult, narrow minded and shit at their jobs.

Yeah sure, you try and calmly discuss your child's problems with professionals who accuse you of making up your child's problems, accuse you of not disciplining them, accuse you of "wanting a diagnosis to claim DLA, blame the child's problems on being an only child/being the middle child/being the child of divorced parents.....
You explain, and explain, and explain because people leave their jobs, go off on leave for months and aren't replaced, the people you do see don't read the paperwork and it's like starting from scratch at every appointment. They don't follow up on stuff, they don't fill out vital paperwork, referrals get mysteriously lost (aka never filled out to start with).

The problem isn't a few crap professionals, it's the whole damn system. The lies professionals tell have become ingrained in the system. How else do you explain the fact parents from different parts of the country have all been told the "a child must be three years behind academically to get a statement" lie?
A lot of professionals lack even the most basic autism knowledge. There are paediatricians out there telling parents their child can't be autistic because "they're too intelligent, they make eye contact, they show affection/have friends...."