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.

@WellThisIsShit

That's a dreadful situation. It happens a lot more than it should when school do not believe parents that a child has a problem

Even if that school are told by CAHMS that your son does need interventions, it's not likely that they will do much, sadly some schools are brilliant at identifying and providing interventions for childrens' needs, many schools are average and some schools like the one your son is currently at are obstructive and confrontational and at the very least totally unhelpful. The ONLY way to improve your son's education is to move schools, no matter how much evidence you provide, your son will never be treated well there.
I know it shouldn't be like that, but once a school turns a blind eye to bullying and a child's difficulties, the child will never be happy there.

I don't know enough about it to advise, but there are some circumstances where a child can be removed from school and the Local Authority can provide tutors. do ask one of the following agencies how you'd go about that if you feel it would be in your son's best interest.

SOS! SEN helpline is closed until 10 Sept, but are you near any of their advice centres? www.sossen.org.uk/advice_centres.php

www.ipsea.org.uk/Pages/Category/get-support

On the whole Iv only come across one dubious professional in cahms butcher parenting advice and techniques weren't bad tbh.

@WellThisIsShit

I can only tell you the mistakes I seemed to make which was speaking FOR my DD when she wouldn’t. This made me look overbearing and anxious. I was anxious at that point in time but it went against me. So try not to do that.

Some will want to talk to the DC and hear mainly their thoughts not yours or some will talk to you and not the DC so you just need to judge it when you meet them really

Also don’t tell them what they should be doing to help or what you think the problem is I think this can put peoples backs up if you think you already have all the answers

I am cringing while I write this as it’s so wrong really!! It shouldn’t be this way

I would go with an open mind about what is going to happen and try to stay positive your goal is DS to be less anxious and distressed.

Some ‘professionals’ are just not all that professional. I had a school psychologist who said ‘how do you expect your son to behave if you give in to his every demand?’ when we did no such thing, and a so-called child psychiatrist who said ‘of course he will be rowdy if you leave him in front of loud TV all day’. We’ve never had a TV. Subsequently DS was diagnosed with ASD and we found some professionals worthy of the name.

I think they are desensitised.

Advice for @Wellthisisshit.

Take an additional adult with you. They can sit in the waiting room with your ds if he gets stressed.

If he is very anxious about going you could arrange to have a first meeting without him present to explain the background so he doesn't have to hear it.

If he is exceedingly anxious about going e.g. to a state where he gets physically aggressive they will do a home visit (although they are reluctant to do so).

Expect the first meeting to take a long time. One hour or more. Our first one was two hours for both ds1 and ds2. Take a calming activity to occupy him if possible.

They will ask a lot of personal questions about family background and medical history. How he was when he was very young. And even questions about your pregnancy. They are likely to want to talk to school and possibly visit him whilst he is in the classroom.

Keep your expectations low so your will not be disappointed. One question they will ask is what you expect from the meeting so think about this before you go into the meeting. Do you want talking therapies, do you want support at school or from social services, are you prepared to try the medication route?

I was told "there is nothing wrong with your ds" and then we've been told
He has attachment issues,
Just a little bit innatentive, and at least he's not trying to kill you everyday
Nothing wrong with him he's just bored,
He just refuses to conform
He is doing it to get attention
We're not getting an EP involved because there are children in more need
He doesn't need to be in a specialist school he just needs to do the set work
He won't get a diagnosis
We won't give him any support
He won't get a statement

There have been lost files, medical and school reports as well as our personal information left in a very public place, LA failure to comply to time limits wrt statement of SEN and failure to comply to time limits wrt transfer to ehcp and failure to carry out a full needs assessment, failure to complete annual reviews. And if things couldn't have got any worse failure to comply with their own complaints procedure, their letter to me regarding their findings actually contains 4 contradictions regarding 4 unlawful things and the only thing the letter admits to is not producing the ehcp within the statutory time limits, but hey it's better to have one that reflects all needs and provision and is late than to not have one at all, right? Except that it took 22 months to produce a document that didn't reflect all his needs therefore the provision couldn't have met all his needs either. We are still waiting for last November's annual review to be completed and I'm still waiting for the excuses.

DS has an ASC and Specific Learning Disabilities. He has been discriminated against, victimised and illegally excluded, he has ended up in specialist independent education. There has been a distinct lack of knowledge and understanding of the Equality Act 2010 and before that the DDA as well as the Children's and Families Act 2014.

It looks like things are getting worse IMO.

for everyone who is trying to navigate the system.

Teachers were the most problematic for us. Disbelieving, judgmental and downright impatient and attacking at times. Once we'd got the referrals we needed to the multi disciplinary diagnosis team all went swimmingly and both children were swiftly and strenuously diagnosed. It was the ignorant gate keepers who put everything down to poor parenting that were the biggest problem and caused the most distress.

I guess sending parents on a parenting course is cheaper than funding SEN provision!

YANBU

I guess sending parents on a parenting course is cheaper than funding SEN provision!
Exactly - i hate the course title.
I know how to parent my kids. Just like DC teachers know how to teach. So it's not person specfic. The issue isnt us. The problem is my DC has SEN and he needs support. Have we had any support with his behaviours?.....fking ZERO.
I've fought for everything, and dont care if I'm 'that parent'. I'll build bridges that don't exist, across the gapping gaps between us and accessing services!!! But no one should have to do that :(

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

This is not the case. There are no resources to support all except the worst parents who have SS involvement.

Ds's school were initially very dismissive when we first approached them about our concerns early last year. They finally did agree to refer for asd assessment but didn't offer any support. It's pretty much taken all of year 10 to get him a small amount of help. We have had to really fight for it too, things only improved in the last half term when a member of the senior leadership team got involved as we were going to withdraw Ds from school.

Ds's mental health has really declined this academic year and he enters year 11 very unhappy. He hates school and I don't think we have enough time to even try and turn that around before his gcses. School do now agree with us that Ds has autism, he has been assessed but we are waiting for his review appointment to confirm a diagnosis. It's been difficult and as other posters have said, there seems to be little to no support out there.

these replies are just shows how endemic it is, to all of us who are slogging against the odds, it does appear schools are a big culprit? whats their game what could they loose from a child being better supported? plus the whole "it doesn't happen at school" thing it probably does, just have too many other children inthe class to notice.

I think the lack of joined up process doesn’t help either each area has such vastly different views on how things should be done and different pathways which just leads to confusion across the board.

I do think though that any sort of course for parents tends to carry many negative connotations and in most cases wrongly so. We see them as a dig as us as parents sometimes but having been on a couple of parenting courses through CAMHs (specifically SEN related ones) they were very useful and also allowed me to build a network of local friends who get it.

Budget cuts don’t help either. Most schools get either x amount of hours or a small financial amount of Ed pshyc visits (outside of ehc process) each year. I know is ds school this allows for two children each year to have a full assessment - so school have to use their time carefully and it will inevitably mean children who need it can’t access it.

The whole thing is a mess

@jennymanara

Oh come on. They could be honest and tell people they don’t meet the criteria for support. They could tell people they don’t have the resources. They don’t have to tell them that they are shitty awful parents who have caused their DC problems after 1 meeting with them

Yesterday my DD16 came to the shops with me. She wanted to buy something specific but when she told me what it was I knew they wouldn’t have it in the supermarket. I was also very hungry after a day at work. We looked quickly and then I said DD let’s just buy food, go home and then we can look online for what you want.

This was not what DD wanted and her mood became very very black, she was very angry and the entire evening was ruined for us all because of this one incident. The words that come out of her mouth could make your hair fall out. This happens all the time and is beyond a normal teenage strop. She has very little reasoning and often no empathy. In the past she has also done things in these situations like: ram trolleys into me, threaten to open car doors and throw herself out when you are driving. What do you DO in this situation? I have no help with it, no one gets it. How is DD going to manage in her adult life if very small problems make her feel like this? I have a DD2 who has moody teenage moments but you can talk to her.

I watched my friend go through years of misdiagnosis for her DS and no support. Her DS is now 9 and she kept asking all the professionals for help from the time he was 2- he was very violent and aggressive and it got worse with each passing year.CAMHS diagnosed him with attachment disorder which was hugely insulting. She knew that couldn't be right and she begged for blood tests. These tests picked up a rare microduplication, the little that is known about it is that carriers will quite often have E&B problems often leading to psychosis and/or schizophrenia in older life. Possible heart conditions too. Everyone ignored this finding preferring to point the finger of blame at my friend despite the fact she didn't fit the usual client type: older mum, homeowner outright, highest echelons of her career, no violence at home, financially comfortable, well educated. He was taken from her last year at the age of 8 because he was a safeguarding issue to her and therefore a safeguarding issue to himself, and was put in a children's home 100 miles away against her will. All the court appointed experts have completely exonerated her. His main diagnosis is now this duplication issue giving rise to atypical autism traits, PDA, PDD. It's the final court hearing this week, but I think they will rule to keep him away because there is no practical support, no resources to help her keep him at home. They cannot take the risk that he'll really hurt her. It's been like a bereavement. She went through countless fertility treatments to have him, spent a fortune to have him. It's nothing short of a Greek tragedy.

RelativePitch so sad for your friend. Heartbreaking

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

in theory, benefits such as DLA are based on care need, not dx but in practice, dx can make a difference. If you e.g. have to give up work due to caring responsibilities for a disabled child (most parents with disabled children are pushed to that at some point due to a complete lack of childcare for children with SN) then many need DLA and carers allowance etc to survive.

what do you suggest families should live of when caring for a child with SN in the absence of disability benefits and whilst unable to hold down a job?

I guess sending parents on a parenting course is cheaper than funding SEN provision!

cheaper and a delaying tactic. you wait fora year for a place in the parenting course. if the child's e g. ASD or learning difficulties are not cured by parents attending the course, you wait another year or two to be finally seen by camhs. even if you get help , you get it 2-3 year later than you should have which means huge savings for camhs.

ITA with PookieDo - I can't count how many children I have come across, in the last 21 years in the world of SEN, whose parents have been told by a mainstream school that there is nothing wrong with the child, or their child won't get a statement (now EHC plan) because they are not two years behind, etc; its turned out (after their parents have obtained comprehensive independent reports) that their needs were so complex, no school in the LA could meet them; and they have ended up in a specialist residential school!

All the parents I know, have advised other parents, starting out on the SEN journey (because once you have a child with SEN, you tend to recognise others in the community or at meetings) to claim DLA, to pay for an independent educational psychologist's report and/or private speech therapy, as the most likely way to find out the extent of their child's problems and what they need to meet them!

DLA is a passport to carer's allowance, which then protects the right to a state pension of the main carer, usually the mother, who has had to give up work and therefore loses contributory years for their pension otherwise.

I always find it strange that people in the public sector agencies, who presumably work for their pay check and pension contributions every month; seem to think parents of children with SEN can live on fresh air, particularly in old age?

It says a lot the response to this thread about the size if the problem, i think the system in itself is the issue not individuals all the time. wish all fellow SEN parents luck with the holidays x