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.

There are always going to be disagreements between professionals who believe the parenting is the primary factor in a child’s behavioural difficulties and the parents of that child, who are almost guaranteed not to think they are. It is a fundamental conflict of interest. That’s probably why.

I do actually agree
At one CAHMS session the counsellor who didn’t know either or us told DD that I was the problem. DD absolutely loved that and has run with it ever since

I stopped trying to get anywhere after that. She is nearly 17 and still has quite obvious behavioural issues/ADHD/PDA traits

When she was 8 we saw the same lady 6 times which was unusual. After that we never saw the same person twice. DD was self harming when she was 14 so I got her re-referred as school was also so bad. I’ve ended up just trying to do what I can with her, to the best of my abilities and hope she grows up into an adult who can manage any conflict/instructions

IMO, its scapegoating and rationing of scarce resources! They know they can’t offer the service all their clients, if diagnosed properly, need - so it’s easier to project all their own frustrations, feelings of responsibility and blame onto the parents.

They say things to you like ‘why do you want a label’ and ‘we can’t give you what you seem to be looking for’ so it’s very negative from the outset
Why do you ask me what I am looking for and not assume 😡

It isn't my experience, although I do know people who have been through this.

I think it's due to lack of knowledge and understanding, yet not knowing they lack knowledge - so they are confident in their opinions (this has a word....unconcious incompetence I think?). This is especially true of school staff who often have very little training in neurodevelopmental conditions, but are happy to present as the 'expert' to parents and other professionals. Also true of some CAMHs staff.

Also, as always, it's due to funding....and not wanting to agree to anything that will mean more work or more money being spent.

My issue is why cant professionals suggest parenting techniques to help without dismissing other issues, because SEN need parenting techniques aswell, just different ones. Pookie Do i cant believe professionals say that at all, and more so infront of the child its so unprofessional and you sound like youve had a shit time of it. big hugs

My issue is why cant professionals suggest parenting techniques to help without dismissing other issues

You mean they haven't suggested a star chart?

It isn't my experience of CAMH either. I cant say they were particularly useful but there was no apportioning blame or negativity or questioning.

Yanbu we have had good and bad experiences. Almost all bad with teachers prior to diagnosis. Much better afterwards. And they wonder why you 'want the label'! Some good and some bad professionals, including again the counsellor who told dd that dh and I were the problems...yeah right, ok then 🤔

It took five years and, ultimately, a formal complaint before DS was finally properly assessed and diagnosed. The team who did the final assessments and diagnosis had to first spend time building our trust as we were both so worn down at that point that we had no faith in them whatsoever. I had some very unprofessional things said to me over the years by the previous team including an accusation of FII, yet whenever DH was in contact with them they were nice as pie. I had sight of several reports that they didn't think I would see and in them they were very scathing of me including flat out lies such as writing that I said I struggled to bond with DS, that I found him difficult to love, and that I didn't understand what boundaries he needed - I had never said any of these things to them. They also stated DS had a "chaotic" home life due to me being unemployed with "many" other children and a "volatile" support network (I was a SAHM while DH worked full time, two other children in addition to DS, and my parents were in the process of an amicable divorce). It still makes me angry that he missed out on so many years of support due to their incompetence.

I think funding has been slashed so much that the resulting workloads and lack of resources have caused a lot of staff to leave, the ones who are left are either not very good and don't give a shit any more or are very good but are so overloaded that a lot of stuff slips through the cracks and is forgotten about.

And they wonder why you 'want the label'!

And then other people think it's so easy to get a diagnosis! "Oh it's just a label these days, they diagnose for any old reason......"

We've had a mix. I found professionals more likely to be - i dont know how to phrase it - dismissive/ finger pointing towards me than DH. Somple things like i go to the doctor about sleep issue and get a pat on the back 'have you tried a routine' he goes and gets melatonin prescribed for son as he must be very tired.

@staydazzling
we had met her for about 10 mins, she was late and immediately announced she was leaving the next week
DD was 14 and wouldn’t speak although she had during the assessment 9 months (!!) before, so I ended up over compensating for it a little, rambling and quite keen and the counsellor turned to DD and said do you find your mum overbearing? DD said yes. So she turned to me and said do you think you over think this? I said no, I have some real struggles and I need some help for and with DD. She said I needed to back off

I didn’t say anything else much for the rest of the session it was a waste of time and I feel like she was just trying to pare down her caseload before handing over

But yes, the "label" helped enormously in getting DS support at school (which has now been removed because he was doing much better, this is apparently evidence that he doesn't need support even though the whole reason hes doing better is because of the support).

I have two children with autism, the eldest they were useless and tried to find something to blame for the way he was (before he was diagnosed).
I honestly used to think people lied about professionals when they said they lied or mislead the truth.
But ive seen it with my own eyes, I was just lucky I had some good professionals to back me up.
Ive even had one professional blame my 42 inch TV for my son's autism (seriously you couldn't make it up).

I always knew wanted I wanted to do with start charts & it had nothing to do with dc! (from which you may guess they were not an effective method ) (tries to think of suitable emoji) There are some wonderful journal articles in sociology (disability studies) which exactly describe the situation "walk a mile in my shoes" which describes the experiences of parent carers of children within the spectrum & social workers & it isn't complimentary (to the sw -sorry to sw who are not like this). My (non) favourite comment for psychiatric social worker about my adolescent dd was: Oh she is so beautiful I am sure she will find someone to look after her - its not easy to shut me up but I was so shocked .... what planet did this woman live on? (dd was very very immature & hadn't said a word to this cretin) decades later & remembering this still riles me

Star charts. Oh dear 😂 well I tried them and if DD didn’t get all the stars she would try to destroy or deface the chart! And she would just try every angle obsessively to get stars and would argue back with you when you said she hadn’t earned one. It was just another source of conflict

I got told my son is in the ‘grey area’ and although he has a lot of the signs he is not displaying enough of them to warrant a diagnosis yet. Things could change apparently.

Meanwhile we were told to book on a course to manage his behaviour, but when we phoned up to book onto it, got told they are not running it anymore.

Our son is the 3rd out of 4 children and it’s clear to us he needs help and that he is not NT.

Dh said it took 6 years to get his stepson a proper diagnosis just as he was starting secondary school.

I am sure ds will experience the same.

This is not me compiling a list of DD’s faults by the way, this is who she is. Summer holidays are awful as she doesn’t have a proper routine. She does have a job now and a few friends now but she struggles with anxious feelings all the time about routine and things that don’t go as planned. She’s always very negative and can be very aggressive in her approach to anything challenging. So a list of chores will feel totally overwhelming to her even though she is physically capable she isn’t good at doing this mentally and emotionally. At work she just has one job doing 1 thing (washing up) but if they ask her to do something extra she struggles and when she gets home will be in a terrible mood for ages. At school she struggled with listening and following any instructions or demands and would have outbursts (then regrets and feel ashamed). She is controlling because it makes her feel better

It varies, I've never experienced that at all but I do know people who have, if I'm honest though, the professionals were probably spot on, dysfunctional families (often) have dysfunctional kids - the symptoms of adhd for instance can be caused both by the neurological condition but also bad parenting, poor sleep, bad diet and lack of boundaries situations, live where I do and you would experience this first hand. Not everything has a medical cause and prescribing drugs or therapy just won't work if there's a different cause. The dr/therapist doesn't know you and should not make assumptions about your ability to parent just because you are dressed nicely and live in a nice area etc.

This hasn’t been our experience. GP referred to CDC without question and CDC diagnosed without judgement. Professionals tell us we are doing a fantastic job as parents. The wait due assessment was ridiculous though. I was really surprised how definite my DD’s diagnosis was are used to her and at the time didn’t really see it. Problems were mainly at school at the time.

Teachers on the other hand, OMFG. Headteachers especially. Judgemental, patronising and rude. All the parents fault, no boundaries at home, blah, blah.

I never got to a CDC, only CAHMS

We couldn’t get to CAMHS, only CDC. They don’t seem to like you crossing from one path to the other.

We got the diagnosis pretty easily, but since we have been dropped like a stone.

We have now self referred to social services as a last and desperate plea for help.

AndMyBirdCanSing -
You mean theyhaven'tsuggested a star chart?

😂 Laughed out loud at that one. You've got to love the cure all Star Chart. We did a family one. DD got hold of the sticker sheet and up every single star on her section of the chart within the first 24 hours of it being up.

The first CAMHs doctor we saw was quite frankly a total prat who was patronising in the extreme. I endured it for the first hour and a half but after that point my tolerance levels had reached their limit and I pulled him up on several things he said. He was clearly quite shocked to have been challenged but did retract what he had said. He is the only medical professional I would point blank refuse to see ever again.

Our current CAMHs consultant is absolutely fabulous. He is an ADHD specialist and I trust him implicitly. He completely and utterly understands ADHD and what's involved with parenting an ADHD child. I feel very relieved and lucky that we as a family have his help. He's never suggested a star chart. 😂