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.

My experience with a suicidal 10 year old was horrible. Apparently I was the problem, I needed to be medicated as I was getting upset during the meeting. My son was telling her how he was self harming and trying to kill him self, who wouldn't get upset hearing that???

If any of you with children with asd get offered the cygnet course we did it and found it useful. I also got a day with the OT who talked through sensory issues which was useful and i paid to attend a session wth Yvonne Newbold on violent and challenging behaviour which wasnt asd specific but was incredibly useful and well worth it. Look her up if your child is violent or challenging.
I think the thing that has upset me most is my son has anxiety but because of ASD he is blocked from recieving treatment. He was on the waiting list for support then was removed when he was diagnosed. They said if you get the environment right he will be fine but thats simply not true.

so many similar stories on here, i got sent on a generic parenting course no SEN specifics, but apparently it 'can apply to both' how lovely i cant do time out with my PDA er as he has a high need for control so with sob relentlessly, make himself throw up and eventually his nose bleeds, thats of course the occasions he deigns to sit still and spends time deciding what step he wont sit on, PDA children are largely anxiety driven and crave absolute control if their environment, the naughty step turns into 'fine but im not sitting on this step im sitting on this one" i couldn't really care less but it displays thar the original discipline element gets lost and turns into something else he needs to control. "Right i will confiscate your Ipad if you do that again" is immediate and relevant and he can retain that. i explained that to a room of blank faces at my parenting course i actually question if the supply workers running it actually knew what PDA was.

thankyou Grass Pigeons ill look up Yvonne Newbold x

A lot of this rings true and we havent even tried to start diagnosis yet.
Dc probably have adhd and odd/pda.
Hyperactive from toddlers and never listened.
And like pp says you put them on the step its, no, if you manage it its i wont sit on that one and sits on another.
I tried to get help from the school nurses at the meeting in yr r. -chocolate teapot. Despite dc1 acting ridiculously for a child at end of yr r. They were no help. Dc1 had also just had an op for doing something most 2-3yo know they shouldnt.
I think the 'it's the parents' fault is so damaging because other people already treat you like that. As if parenting like this isnt draining enough.
Im sure things like sleep dont help, however trying to get 2 dc to sleep 10+ hrs is not easy plus i try to minimise the time they are together.
And as pp say you end up not telling them exciting/nerve wracking things are coming up as then the sleep is worse.

Personally i think the other damage is the not recognising the behaviour as unusual as a toddler i went on to have another dc. And the interaction between the 2 makes things so much worse.
With the gp etc ignoring - they are dismissive even with physical things too. And my dc1 once screamed all the way to gp re ear issues then was fine when in with them. Luckily that gp was so much better

My DS isn't SEN diagnosed yet, but has quite a serious a speech delay, he's only 3 though. We went on a council provided course for 10 weeks and it basically totally the parents fault and yes a star chart was suggested . The way they spoke to us was like we put our kids in front of the tv all day and never speak to them. Maybe some parents do but it's hard to take the positive advice from a course when you are being heavily criticised. There are things I could do better I'm sure !

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

Yes this is pretty much our experience and then the added 'so our services can't help you' Same with the dietitian.

He, thanksfully has a genetic condition that needs monitoring on a yearly basis, so we are at least in the system. His paediatrician does try and fight his corner for him, however unsuccessful that might be.

@staydazzling

When they get older they may do as my DD and try to replicate things onto you. So if she can’t have something, apparently neither can I 😂 as a distraction away from what is going on.

you can soon find yourself down into a very deep rabbit hole of their anxiety flooding out and hitting you like a wave only for them to completely deny how any of it it begun and absolutely any strategy you try to put into place they can and will try to ‘break’ it. I have been told by my ex that I allow her to ‘walk all over me’ but I can honestly say hand on heart any punishment dealt out by me or the school has just been met with even more resistance and difficult behaviour than what the initial outburst was in the first place. The swearing gets me down a bit but I understand it’s some kind of outlet for her

I have a long back story to mine, she was always a very demanding baby but PFB so a lot was attributed to that. She would RAGE at you for very small things and the rages would go on for a long time even as a baby very often completely red in the face high pitched angry screaming and thrashing about but nothing medically wrong. She breath held when she was a toddler and would hit and lash out, break and throw things, tell fibs and try to manipulate/control situations. I had SS called on me about the screaming, I’ve had my HV involved heavily, I went to classes, we went to CAHMS when she became more violent and angry.

She has only really started to make proper friends in the last couple of years as she’s learnt to control/mask her rages in front of people. School was so tiring for us all, constant constant conflict and her perception of right and wrong is very heightened if this makes sense? She is difficult to have a 2 way convo with - she will just tell you things and expect a response and if you bring up something she isn’t interested in she will be very rude to you to make you stop talking. She gets obsessed by things frequently and cannot stop thinking about them, she often can’t sleep because of it and recently she has been obsessing about some small bumps on her hands. You have to look at these and talk about them Every Day or she will feel rejected by you. She will still come in your bed to sleep but rejects any physical touch at all. She will not be in the same room if you are eating or drinking

But she is lovely with animals and quite a practical person in many ways. She is also very funny and entertaining. She’s very generous and always likes to do things the right way, she just can be over bearing about it 😂

thats odd snap with my ds, great with animals, younger children, and likes to be "helpful" making bed, chores actively adks for chores etc but terrible with everyone else 😂😂

This is why early intervention is so vital for young people with ASD, ADHD and PDA.

And why whenever I see a post like 'AIBU to not get my child a diagnosis because they are coping fine at school and there are no problems...' I know that CAMHS are going to be involved in the not too distant future.

Not judging all those whose kids are diagnosed late, just the ones that know deep down their children have SEN and put their own feelings about 'the label' before the welfare of their child.

jamoncrumpet Ds is being assessed for autism at 15 and it really is a very difficult age to be going through this. We were aware of his asd characteristics from quite an early age but he seemed to cope so we didn't pursue a diagnosis.

Huge mistake in our part. Secondary school has been really difficult and his coping mechanisms have fallen apart. He starts year 11 in September and we hope after waiting over a year since his referral he may finally get a diagnosis in the autumn term. Being undiagnosed and unsupported in school for all these years has caused so many problems for him.

@BlankTimes really couldn't say that any better!

I've found the medical professionals are great, even when the school reports that your child is completely opposite to how they are at home and in public. The 'help' you get referred to or the stupid course that you have to do before you can even see a consultant are mostly rubbish.

The lady running the triple P course insisted my eldest didn't have autism and his getting angry on the computer was attention seeking (it wasn't, it was genuine frustration at not understanding others in multiplayer games). He got a diagnosis a year later and was found to have a micro deletion associated with autism.
Even the outreach worker from the sen school was a mixed bag and insisted my youngest knew what he was doing when he was going up to and hitting other children in his class so he needed pinning down in time out. The learning disability nurse was appalled at first when I told her this and she said he just didn't know how to interact with other children and was desperate to. Well, later on (she must have spoken to the outreach worker). She said the outreach worker was right and he needed to be punished. Well, she was actually right the first time. He didn't need punishing, he needed time and being shown how to interact. Punishing him, made him more angry and aggressive as he thought he was being attacked.

My ds was diagnosed antenatally with a chromosomal disorder so we have been with CDC and the associated disciplines from birth. Our experience has been very good thankfully. Ds was referred to CAHMS but as I anticipated they refused to see him and he eventually got his ASD/ADHD dx through an ASD clinic (that we had to wait 18 months for).

Like a previous poster as a SW I came on to say that it is shocking how many families have already diagnosed ASD/ADHD in their children and will not entertain any form of parenting class, family sessions or any other support or intervention. Very very few people would describe their home life as chaotic, even the most dysfunctional homes consider themselves to be good parents so it can be hard for 'average' parents to understand why some questions are asked. I'm talking about homes with substance abuse, DV, severe aggression, neglect etc Parents sometimes are the problem but they are asking for a ASD label rather than wanting to address the issues.

OP you have had a hard time but these professionals are not out to make your life hard on purpose. By any means lodge a complaint if you feel staff have been lying or treated you unfairly.

These stories are very sad. The system is broken.

I do appreciate sometimes parents are the proof but they are more likely to be the ones who won't engage at all, the level of fighting parents have to do now i assume is there to filter the cant be bothereds out, As terrible as it is, the kids in my ds school whos kids are much lower functioning, have help in place are obviously SEN,.... I envy their parents, in the sense, you dont need to prove its not all your fault. you have help. (hope that doesn't offend) its not right that is it, when society fails HF ASD children and other SEN kids to that degree somethings wrong there.

*parents are the problem, not proof.

stay not necessarily. They are more likely to threaten staff with violence if they don't told what they want to hear though.
The system is as bad as it is purely because of funding (or lack of) The government is not trying to reduce the amount of diagnosis' by filtering via parents who are willing to fight. Whilst it may feel that way it really isn't the case.

My son is on the higher functioning side of the spectrum and it has been a fight to get him the support and education he needs. He will be going to a specialist school from September, but is in their higher functioning class which is run similarly to a mainstream content-wise. He can stay there until he's 18.

I fought and fought to get him this place. Hours of work. Hours of research. Battling with the LA. Appealing to the SENDIST tribunal.

He's four. I am playing the long game here. I'm an ex teacher and I've seen what happens to children with ASD that seem to be 'fine' in mainstream.

its largely lack of funding not purely, a significant proportion of it is poor and discriminatory attitudes towards parents. one that really sticks out to me is a woman who asked for some respite from her severely physically disabled son and gor sent on a triple P course, its so cruel.

There is a lack of funding. And it should be easier to get the help our kids need. I sacrificed so much this year to help my son. You can navigate that red tape yourself but it's not easy. And I have no idea how people with less education or money could take on an LA in court and win. The forms themselves are a minefield.

I am glad that my son will be ok but I always worry about the kids that are left behind.

You're right of course @Punxsutawney but unless you have extensive knowledge of SEN how could you possibly have known that these issues would come up when your child was small?

Like I say I don't blame you. You thought you were doing the right thing.

My ds has had input from professionals since he was about 10 months old, speech, physio, ot, paeds etc. He has a complex range of needs...physical, medical, developmental etc and had inclusion support, an EHCP, and a place in a complex needs resource base.

We have come cross some amazing individuals who have helped ds, helped us and are like gold dust.

Unfortunately we have also come across many individuals who are like poison, they have questioned our (alright, my) parenting, lied and neglected to support ds.

When ds had an autism assessment (not supported by school) the school lied and said ds had no issues at school so any difficulties with behaviour were as a result of his home life. Ds didn't get a diagnosis, despite many autistic tendencies, as he was 1 point off the cut off score. The consultant said he could see he had "many strong features of autism but they were not consistent in different environments"

A month after the assessment (at 8) he was diagnosed with a rare genetic syndrome which has features of autistic traits and ADHD.

The best support we have had has been from LD CAMHS and portage when ds was younger. CAMHS have been incredible in getting school to understand ds's issues and in providing strategies that support ds and us as a family.

Having a diagnosis has helped, because the few children and young adults around the world with the same syndrome all have similar issues, so school have to accept that unless all of our parenting is at fault, maybe there are other factors at play.

School has been the most difficult, with ds becoming ill due to anxiety, a TA telling us that I hampered ds's development, and telling ds that the supplemental drinks he needed for extra calories were making him sick amongst many many incidents. It got to such a point that dh had to take ds to school as the TA would no longer communicate with me.

I also work with preschool children with disabilities, and see the flipside of professionals and how some of them talk about parents. It is often appalling.

My son is 'low functioning '. Camhs locally won't work with children who are low functioning because they won't medicate without other therapies first.