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.

Bored40, you are probably right. But we try very hard to ensure my son has 12hours sleep, has plenty of exercise daily and has a lower sugar diet. I have never given him caffeine. His behaviour is a million times worse when he has not slept well. But there are other concerns, he is emotionally distressed (paediatricians words not mine) also has a sensory issue to loud noises, and is obsessed about all sorts of things from death, to fairness, and wanting to know the timings of everything. Sometimes he is too much to bear and I don’t know how I am supposed to respond. He will talk and talk and talk with no awareness and it wears you down. He is his own worst critic and can’t tolerate mistakes, if he can’t write a sentence perfectly at age 5, he will scream and tear the page up and cry that he wants die and hates himself.

Yet all I was told to do was go on a course to help with this, but it’s not running anymore. What am I supposed to do?

Meanwhile my other children cannot have friends over because he gets over excited and will literally defecate and climb the furniture because he doesn’t know how to handle himself when we have guests. Yet when it is just his family he is calm as anything.

I don’t know what people think of me and my parenting I have had to lock him outside on occasion because he was going to hurt himself or other people with his behaviour. I have to physically carry him out the back and watch and wait for him to calm down. Sometimes I get him to run laps around the garden to burn it off. I can’t be doing that when he is older.

What do I do then? Honestly if it was parenting and it maybe, I had an alcoholic mother I have no idea what a good parent looks like, I am trying my best, I would happily learn how to be better at this if it truly made a difference.

@fucket sorry I didn't mean in any way to suggest that I was justifying poor treatment towards parents and families where there were real issues. Just responding to the OPs question and giving one explanation for professional cynicism in services that are over stretched and under resourced.
I think for any parent who is caring for a child with clear SEN needs it can be hard to comprehend that some people might throw around these terms without any real basis. But then you only have to see how many people misuse terms like 'ocd' or 'meltdown' to see how it can happen.

The only practical suggestion I can make is to keep a diary, but of the good, bad and day to day. And ask others who care for your child to contribute. Seeing that variance is really helpful for professionals (and more informative than a list of solely negatives)

I do hope you get the support you need.

I remember just asking someone to tell me what to do. I just wanted someone to tell me how to do it. Probably unreasonable request but I didn’t know what else to ask for!

Just reading through the posts and it does appear that the posts from 'professionals' give examples of their experiences of the many examples of the many other reasons besides a specific diagonsable condition to explain why they 'judge' parents.

It is this exactly that is the problem for parents of dc with diagnosed/waiting to be diagnosed/undiagnosed conditions - they are judged the same as those parents who have other reasons for wanting/requiring a 'diagnosable condition' to explain their dc's behaviour.

Whilst it's understandable that professionals have this 'cynical' view it isn't very helpful for the parents of dc that really do have these diagnosable, and widely recognized, conditions.

honestly I do blame myself, I do think I am failing him. There are days when I get snappy and I know it doesn’t help. But mostly we are united in doing what’s right for him and the others.

I doubt he will get a dx because he is very good at masking his behaviour at school. Saves it all up for me at 3.30pm.

I totally understand that they are jaded, but they seem to be so much more jaded than other professions such as if you go to the GP for a health reason they do not usually automatically accuse you of being over anxious paranoid and making it up to get extra benefits

I have a diary but no one as of yet as asked to look at it, even when I have put it on the desk I’m front of them.

Services have been cut to the bone. It’s not at breaking point, it’s already broken.

If you take something written down this often doesn’t help you either, I also tried that. It just looked like I was trying to find fault with DD and that I didn’t like her and was trying to find something to blame everything on

Maybe we have just been lucky in our local area, but DD was diagnosed with autism aged 13, and severe depression aged 18. Our experience with the child psychiatry team was very good. DD saw an excellent therapist for several weeks, and attended a nurse led autism social skills training course.
Her teachers at secondary were very supportive, as were her uni lecturers and the uni pastoral care team.
The adult psychiatrists, crisis team and GP who have been caring for her since then have also been excellent. After two serious suicide attempts, DD is (fingers crossed) stable on medication and working in a senior career post, where her company have also provided free counselling and an autism friendly work environment. She is under regular NHS review.
We live in Scotland, and benefit from the higher NHS funding allocated to us by Westminster, compared to England. I gather things can be grim darn sarf...

I think also babdoc yiu are talking about 5 years ago. There has been a lot of cuts and changes since then, especially in my area.

I think it's a tough one because when you child is diagnosed your given a bundle of leaflets and of u go, so it's basically they provide free ASD training for parents which trust me costs a lot if u google asd course, you have to work with them to help ur child they Cnt do it for you, you can't b negative an say my child can't do that, u have to b positive an in time they will, it's all about helping them cope finding ways to help them, always being one step ahead, I new a woman who refused to go on any courses, her son is 16 now and doesn't leave the house or socialise with anyway, she really struggled with him, but she was referred to social services because she wasn't doing enough to help her child, I don't think a professional person would speak baby to anyone unless they felt they were not helping their child, that's their job the child's interest and wellbeing. I certainly wouldn't allow to be spoken to in that way if I feel I have done nothing wrong, there are ways you can complain.

@Drepess Thank-you

Fucket, if you have other children and you parent them all the same and the others don't behave like your son does, then it's not your parenting that should be in question.

Whilst you're waiting for some help as currently your son is masking, (there may be a point when he can't then all the people who "don't see" anything will suddenly see and at least recognise there's difficulties) do read as much as you can about different AN and what techniques can help, then just use a system of trial and error until you find things that work, it doesn't matter what AN the techniques are specifically for, if they work for you both, they work.

Here are a few ideas based on what you've said, feel free to take anything on board that you think may help and ignore the rest, you know your child and what he'll respond favourably to. I could be way off the mark.
Noise, will he wear ear defenders or noise cancelling headphones? Can you warn him in advance about any noise the family are about to make?
Does a spiky wobble cushion help him to sit still and focus?
Is he calmer with a weighted vest or lap pad?
If he's hyper would a mini trampoline be an option?
Anxiety can be the driver for a lot of behaviour, if you can find what causes the anxiety and reduce that, the behaviour shouldn't be so extreme.

Re visitors, can you do a first, next and then explanation about what's happening and explain to him what his role is in that situation.
It sounds as though he's seeing his safe space being invaded and doesn't know how to cope and he's frankly terrified because he doesn't know what's going on, he doesn't know why those people are there, everyone else seems to know what to do and how to act while they are there, but he doesn't. For him, home has suddenly become very different with different people in it and he doesn't know what to do to make it like home again. He's overwhelmed.

All behaviour is communication, it's just figuring out what's being communicated that's the hard bit.
Also he may not pick up on any inferences and be very literal, try and modify explanations and communication to simple, clear instructions.

Re transitions, a now, next and then explanation can help change from one activity to another so he can understand why one thing has to stop and another one start.

Other sensory stuff www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117

Ds is currently being assessed for autism on the NHS pathway through our local child development centre. The health professionals he has seen for assessments have not judged us (as far as I can tell after meeting them and reading their reports). The big issue for us is the really long waits for assessments and appointments.

It looks like Ds will be getting an autism diagnosis in the next couple of months. I'm pretty sure he will then be discharged and that will be it. We have really needed some support at times over the last year and there just doesn't seem to be any available.

funding is a huge issue, but it also,... isnt the main issue? a lot of the most disturbing failures high on here cant be blamed on lack of funding and i think thays a taboo in itself, although funding cuts is a huge issue across the social /health care system as a whole. i do appreciate some workers do see dysfunctional families but it needs to stay where it is, by assuming that as a default whenever a parent asks for help that they are being dishonest for financial gain, it is almost as unethical as viewing sexual assault victims immediately with suspicion in my opinion.

But it isn't necessarily about financial gain. I have a family member who complains loudly that CAHMS are useless and just criticise her parenting. Her DD might have issues even if the parenting was perfect. But what CAHMS have actually said to her is that her parenting is exacerbating her DDs difficulties, but she simply does not want to hear it. nd tbh it is bloody obvious that her parenting is exacerbating her DDs difficulties. She loves her DD but is the type to always insist that everything she does is right.

@Bored40 has explained it very well.

There are so many different branches of SEN but there is so much focus on ASD & ADHD.
I have seen so many children misdiagnosed with ADHD when a lot is also learned behaviour. I have also seen so many children with ASD who are undiagnosed and struggling to get the support.
I am not a medical professional but I have a lot of first hand experience in SEN.
I am asked to frequently fill out forms for children waiting to be observed. These ‘checklists’ are absolute shite and do not give a true reflection of the child’s needs.

Dyslexia as an example. Dyslexia is a lot more complex than people think. Many of the traits of dyslexia are similar to ASD.
Another is global learning delay. Some children just progress at a slower pace.

It is shocking how many parents are convinced that their children must have needs as they are not the model pupil and struggle in particular areas. It is also shocking how many parents have to fight when it’s clear their children have additional needs.

Also, quite importantly, yes a lot of the time a diagnosis is wanted for extra funding. But there is absolutely nothing wrong with that. That extra funding gives that child the very much needed extra support that they need.

OP sometimes you will deal with judgemental idiots but there are professionals who truly care. I guess that could be said about any profession.

I do have to agree with a lot of PP. many of the barriers are from staff that work in schools. Thank goodness I work in such a supportive school.

Like others we got a diagnosis pretty easily, but since then we have had no support. It's been 10 years and we have muddled through.

More recently, DS had been suffering from awful anxiety which causes him to self harm at school. (specialist placement). School referred him to the behavioural team for support and from the information school provided we have been told that this anxiety I'd due to autism so they can offer me a place on a parenting course, with sessions such as 'what is autism' and 'sleep problems' of which DS has none. When I pointed out to the nurse who wrote to us that my attendance at the courses would not help DS at school and that I had done all these before when he was first diagnosed I was accused if being negative and told that if I don't attend we will be discharged from the 'service'.

Oh yes. We have had start charts suggested, and a visual timetable which adds more anxiety to DS because he knows what is coming!

Plus the old dietician adage 'he will eat when he is hungry' He managed four days before he collapsed once. His diet is still shit and ridiculously limited and then every so often he cuts out one of the three things he will eat, or just stops eating altogether. Another suggestion has been powdered drinks, which he refused. Told to keep trying so I told the dietician to try. He threw it at her ( which i shouldn't find funny but was hysterical).

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

CAHMS told us to reward dd with iPad time. I asked how that would work with 3 other dc? No answer. Incredibly inexperienced working in a family dynamic. Also, we suspect dd Has PDA, so rewards are pretty pointless!

I am, however, very grateful to cahms for initially diagnosing my two dds with ASD at a time where girls with autism wasn’t really recognised. It was with a huge fight and criticism of my parenting.

Maybe because to diagnose an actual condition would mean longer term care and spending of the budget for meds, therapy, respite etc.

That would then take away money from the senior management who have a penchant for luxury cars and holidays.

I'm also speaking from experience...

When you feel like you are failing your children because you have to jump through constant hoops, make almost daily phone calls, send emails/letters, constant research in order to seek all the additional help you can... you think you're finally getting somewhere and then some asshole tells you "we don't have your paperwork Mrs FookMe" then silence...

no sorry, no proactive assistance, no admitting responsibility when it's noted they received it a year ago and have LOST it.

It's a fucking farce

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

This is half the problem, we don’t even believe each other, why would professionals believe us?

I am having slightly better experiences now, but when DS was in primary school I went through hell from y2-leaving y6. It’s really damaged me. When his high school put simple things in place to help him it shocks me because I’m not used to it.

His diet is still shit and ridiculously limited and then every so often he cuts out one of the three things he will eat, or just stops eating altogether

God we are living the same life.

CAMHS in our area is as much use as a chocolate teapot for children with an ASC. Basics they seem to miss (i) It is highly distressing for a child to hear their difficulties discussed in front of them & they do not have any strategies to make the experience less stressful for them. (ii) Assessment without support is at best pointless and actually in reality it is likely to do harm - both for the child's mental health and that of the carer's (dh and I are usually low for days after this type of appointment and we have, had upwards of 50 similar appointments with various professionsals) (iii) They seem to have no understanding that a child can have both an ASC and mental health difficulties and no strategies to deal with this situation (even I with only two children can see this is possible so I am not sure why they can't). As soon as they decide your child has an ASC that's it is there is no other possible explanation for their behaviour or difficulties. And this is even before I go onto the fact that they can not even recognise that if you prescribe a child an anti-psychotic and they go psychotic than maybe, just maybe, it is the drug causing the problems.