“If only they’d listened...”

“Our concerns were fobbed off by school.  One day, my son threw himself into the ring road on his way to school. Yet school allowed him to walk home alone, and he ended up being hospitalised. I had played audio recordings of his distress to school, but nothing was done and was it was shrugged off as being all my fault etc. Secondary school has been so traumatic for my son. He feels nobody listened to him. We’re just about to start it all over again with college.” 

“If things had been done properly back then, we wouldn’t have a traumatised, violent, suicidal child now.”

“If only my child had been offered mental health support when we first asked for it. Instead, we had to wait until things became more and more extreme, when he was a risk to himself and to others.”

“Six years ago, my then six-year-old son was in school. Now he is completely unable to attend school and he has no social interaction with his peers or any social experiences at all. He often doesn't leave the house. His anxiety is so bad he has very distressing meltdowns where he is physically violent and hurts me and his siblings. He is in such a heightened anxious state that he cannot engage with therapy. When he was six I know early intervention would have helped my child massively. Yet back then we were discharged from CAMHS, and I was told his behaviour was my fault. It took several more difficult years until he was assessed and diagnosed as autistic.”

If only they had listened when I told my GP and Health Visitor that my son needed an autism assessment.  Instead, I was told that I needed a parenting course, because I was either a negligent or a paranoid mother. By the time he was five years old, he was talking about shooting himself, and his violence in meltdowns were lasting over three hours. By the time he was in Year Five, his violent meltdowns and frequent running away was a danger to himself and to others, including his younger siblings. At this point, the SENCO reported us to the police and social services because they suspected we were maltreating him. We were interviewed under caution; he was strip searched in hospital for suspected injuries. We were so lucky that the Social Worker assigned to us had come across a previous case of Autistic Masking, and she believed us. With her help, things are so different now. He is diagnosed and doing well in a specialist provision, very happy and proudly Autistic. Meltdowns and behavioural issues are very rare   now.“

“Not listening caused 10 extra years of struggle with all the associated MH issues that brings too.”

“If only they had listened to me when my daughter was in primary school. I told them she was different. They ignored me because she was doing well academically. I’m now fighting a battle at high school. If they had just listened and helped we would be in a totally different place. Instead, things are getting harder for her, she has been made to feel like a problem child and she is being given lots of isolation time and lots of detention. I feel like I’m letting her down. It’s me and her against the world and we are both struggling with all of it.”

“If only some SEND teams weren’t so stubborn and insist on mainstream secondary when children are clearly at crisis point already in primary school.”

“If only they listened” when we first got my then 6-year-old’s EHCP and 5 different schools said they couldn’t meet need because he was too cognitively delayed. So, he has to stay at the school that failed him for another full year. He became so distressed that even walking through the front door of the school was too much for him, I then had the attendance officer come to my house and threaten me with going to court if I didn’t get him in. It took 7 requests for an EHCP.”

“If only there wasn’t a lack of holistic approaches which recognise that anxiety and autism go hand-in-hand and you have to address and support both.”

“If only they'd listened when we said that "socialisation” and “being with other children in a classroom" should be dropped as his goals.  it is too stressful due to early life trauma and consequent hypervigilance. Calm one to one activities are best. We have got to this point now, but they could have done it 3 years earlier. In those three years, his anxiety and dysregulation were so heightened that he was hiding under the table, running out of the classroom, getting louder and more insistent, shouting, hitting, and biting teachers and so much more. He was exhausted by all of it, and it could all have been avoided had they met his needs earlier.”

“The refusal by commissioning services to invest in child mental health services with expertise in complex behaviours so that my child was only seen and taken seriously when he attempted to take his life by putting a plastic bag over his head.”

“Six years ago, I had a CAMHS meeting which dismissed my son's difficulties. He could have been helped then. He would engage then. Now he is unable to engage and is struggling massively. Things could have been so different if he had had the help he needed then.”

“I wish they would listen to the parents before it becomes extreme and can't be ignored anymore. Even then they'll just listen but can't often help."

“If only they’d listened when I began to suspect that my younger child was autistic too, instead of using their symptoms as further clarification that I was a rubbish parent.”

“If only they listened when I said mainstream secondary wasn’t suitable for my autistic son. He has been bullied and traumatised, and he has been excluded so many times for disruptive behaviour. He is a shadow of his former self. He has become very violent and has self-harmed and also put other children in danger. His mental health has deteriorated rapidly. We as a family are at crisis point, there is no support, only parent blaming/shaming.”

I found the gas-lighting and lack of support way harder to cope with than my son's disability. In fact, just this week I was told I hadn't accepted he was disabled (he's nearly 15), to which I said no what I have never got over is the lack of support and trauma caused by professionals who have not listened to me or helped me over 15 years and still don't want to help until we are at crisis point. We asked for help repeatedly, and instead we were dismissed every time, in a way that made us feel as if we were the problem.”

“If only they’d listened to what we were saying instead of blaming us and judging us. I wish I’d known how common parent-blame is because I really began to think it really was all my fault. Right from the start we have been failed because a school SENCO who didn't understand masking, phoned my GP before my appointment with them to ask for an Autism assessment, and told our GP that there were no issues, Worse than that, the SENCO told the GP that it was all in my head, and that they had concerns about my daughter’s welfare. This resulted in the GP stripping off my six-year-old daughter to look for potential injuries, which was incredibly traumatic for her. Of course, they found nothing, but we never got that referral either.”

“Before my child was diagnosed, it was impossible to get a CAMHS appointment. Finally, after we received a diagnosis we were seen and dismissed. I was told his 'distress' was a projection of my own feelings. I was also told by a psychologist that it was very likely that my child would end up in the prison system. He was 6 years old at the time. He was written off as a lost cause at the tender age of 6. With some support then, I think my son would be a happier person today instead of a teenager who is unable to access education and who spends his whole day at home on his own with crippling anxiety.”

“I wish that there wasn't such a blame culture on parents with children with difficult behaviour. It's hard enough as it is without being made to feel like you are to blame and that you aren't doing enough when your whole life is your children and everything you do is for them only to be made to feel like its not good enough. I wish things didn't have to get to crisis point before services step in to help when you are crying out for help way before it gets to that point.”

“In society it would just be so nice to not feel so judged and also for your child not to be judged as a naughty child and for people to understand that it’s not just a case of your child being "naughty". Because of this, just going out can be so hard it almost makes you feel like you don't want to leave your house because of all the stares and the tutting and lack of understanding."

“If only we had been told that having my autistic seven-year-old son placed in a behavioural school, we would have to appeal to get him out. We did not know this at the time, and he is just not coping. The school is like a prison, and he should have not gone here. There are very high fences and another new high fence gate that I have to wait at when I collect him. He is being hit by other children, but nothing is done to protect him, and often we aren’t even told. We feel we were failed by everyone who suggested that this would be a good move for our son. He had previously been aggressive towards his teachers, but he’s anxious, not naughty, and he actually enjoyed school most of the time. “

“In our council we have a short breaks team, and we have a complex care needs team, both who support children with respite. The criteria to get under the complex care needs team is extremely high, and we had to have professional support to get there. However, I have recently been informed by them that their criteria is changing, and in order to be under that team, your family must require a social worker, otherwise you’ll be discharged.”

“Our daughter has funding for two-to-one PA support, but I can’t find anyone to do it. Her support plan contains lots of support, but the services don’t exist that could put this support into action.”

“Professional and front-line staff seldom have the time, patience, and consistency that families need. You can get someone great from time to time but only for a few weeks/months then nothing at all again, like they think the situation is fixed? Removing help when it's only just started to work doesn't make any sense. This means you have to keep going back and forth and never really get anywhere. Or you get someone new so you're starting all over again and everyone does things differently. This is especially difficult for children like ours who can't cope with change and really struggle with strangers and trusting people.”

“My seventeen-year-old autistic son has just started an apprenticeship. If only they told me that this doesn’t count as education, so transport has been stopped, his EHCP is no longer applicable, and I’ve also lost tax credits.”

“I wish there were more specialist social workers who understand Pathological Demand Avoidance and linked conditions. I wish there was much more support for special guardians who are left to deal with the growing needs of complex children once they have got proceedings to court. I wish there was a better network of support for our most vulnerable families who are often doing an amazing job in extreme situations.”

“It was strongly suggested to us that our child should be placed on the Dynamic Support Register. Unfortunately, our town have changed the criteria for this, and now say that unless you are referred by CAMHS then a referral will not be accepted. That means that children like mine, who CAMHS won’t see, cannot receive the support from being on the DSR.”

“If only our children didn’t have to fail so tremendously before they got support. I have two autistic sons. They are both very academic, but both also masked their differences very successfully at primary school, and then coming home and dissolving spectacularly. I told everyone that things weren’t going to go well for them in mainstream Secondary School. I asked for help for both of them, but I was ignored. Instead, both boys had to start mainstream school and then be seen to fail. They were both unable to attend school by the end of Year 7; the younger one only managed four weeks. Eventually, EHCPs were put in place, and they moved to specialist provision. But it was very traumatic, they both suffered immeasurable harm to their mental health and overall well-being, and this should all have been put in place before the end of primary school.”

If only infant school had listened when I said my son was falling apart at home - instead of saying “well he’s a model pupil at school so it must be you.”

“Mainstream primary school that "specialised in SEND in the mainstream" ignoring my concerns about how distressed my daughter was around coming in and how aggressive she was in the evening. I explained to them that the time would come where I wouldn't be able to get her in and please could we work on it now. Fast forward a year, and my daughter became too distressed to go to school, and I got fed up with being fobbed off with "She's fine when she's here", "yes, we know she's masking, but we are supporting her.” “No, she doesn't need an ehcp". They even advised me to use "special time with mum" as a carrot to encourage school attendance and "good behaviour". I withdrew her in May to home educate, and I will never send her back. She is still only six, and in burnout, but happier overall, and our relationship has improved because I'm no longer the "evil one” forcing her to go to school every day.”

“It was incredibly frustrating that the school took the approach that because it wasn't a "problem at school" that nothing needed to be done. We were ringing the alarm bells furiously and were ignored and placated at every stage. Here we are now, and my daughter is now traumatised about the very idea of school. A few little tweaks were all she needed, and they just didn't want to know. Had she been aggressive at school, I daresay they would have been the ones demanding meetings, instead of us. Between us, her father and I have over 30 years’ experience in supporting adults and children with Autism, Intellectual Disabilities, Mental Health issues and a number of other conditions. Yet we were given zero guidance in how to support our child. When she was first diagnosed as being Autistic, it felt as if they were saying “Here’s the diagnosis. Goodbye.” I dread to think how we would have coped without our professional skills, knowledge, and experience.”

“If only they had listened when I kept on saying just how difficult things were at home. All I kept on getting was 'but we don't see that in school'. It took my son assaulting a member of staff for me to be believed for the first time ever. He 10 now and finally in SEMH provision.”

“If only they had listened when, at 18-months, I began raising my son's difficulties. I listened, while they said things like “He's fine with us.” “He won't get an EHCP.” “You're over worrying.” “Oh, my son does that too.” “You're depressed.” “You need to be firmer.” “'You need to set more boundaries,” “You need to make home boring, so he chooses school.” And so on.. I listened. Yet no-one listened to me, the person who knows my son best. He’s 11-years-old now and he’s been out of school for 3 years. He's doing well now but took nearly ten years of trying to get people to listen.”

“We have two children, aged 9 and 11. Both have complex needs and disabilities, and both of them are out of school. There isn't a school that can meet our 9-year-olds needs, and by the time specialist provision was agreed for our 11-year-old, she was too traumatised for it to work. I have no doubt that had the schools, the LA, and the NHS listened to us, that at least our 11-year-old would still be in a school setting.”

“If only they'd listened ... when I first said my child was struggling - back in nursery. And again when the wheels truly began to fall off at the beginning of Year Three. We had already had his elder brother the year before completely fall apart, unable to cope in mainstream. He had wanted to “unalive himself” and it felt no one had batted an eyelid of concern.  We’d been there before, so when I started to see my youngest child struggle to cope and his mask cracking, I tried to get everyone around to listen. Instead, I got told he was fine, that it was all my anxiety projected on to him, that I just needed to discipline him more strictly. And now I have a traumatised child who has been referred for much needed mental health support, who I am now having to home educate as he struggles with significant school trauma.”

“I wish our neurological development team had listened to me begging them to complete his assessments so he could be officially diagnosed autistic and therefore have the opportunity to get into a school that would better suit his needs. I told them so many times that we were going to hit crisis point. And then we did. We have now finally got a diagnosis when I sent an angry email detailing how they had failed my child. But let's face it, it's years too late. It's heartbreaking. He’s only eight, so still little. Too little to have been let down by the system so many times. Things have eased a bit now I've pulled him out of school, but he is angry and traumatised.”

“If only they had listened to me advocating for my child’s needs in school instead of saying to my face that I was lying. It means that two years have already been wasted, with my child becoming increasingly distressed and unable to always attend school. They told me my daughter was fine there, when clearly, she wasn’t. School refusal/frequent sore tummies/difficulties, maintaining relationships with girls, and preferring company of boys, unable to follow 2 step instructions. She was diagnosed ASD/ADHD at high school, but earlier support may have helped her engage with workers and maintained a more stable mental health.”

“I think they just don’t care. Our young people are difficult to manage so they can’t be bothered. There’s no money to support our children/young people. it’s lack of funding, so lack of staff, and the ones they do have are overworked because the government don’t feel that our young people have any worth.” 

“All NHS services other than the sleep clinic have discharged our 9-year-old, and it is extremely difficult to get him the right support without going private, because people are scared of how complex he is, so instead they dismiss that he needs their support.”

“We are at the older end of the age group. My daughter is 24 now. The biggest failure of support is around overnight respite. We got respite in children’s services at my daughter’s school but even when she was having transition Annual Reviews from Y9 we were asking what would happen when she moved out of children’s services. We were told it was too far in the future to plan for, that existing services could be tweaked to make them suitable. But when she left her respite age 19 there was nothing. It was left to the family to try and find somewhere and because of her crisis behaviour nowhere was suitable or would take her.”

When your GP tells you your baby isn’t disabled, they’re just a bit “gormless”

“My son has cerebral palsy, he is Autistic, and he has a significant learning disability. Despite his complex needs, he had no diagnosis whatsoever until he was four-and-a-half, and he no support at all until he was three years old. Up to this point, I was just told "Mum needs to stop worrying".  "Mum needs to put child in nursery to give him some stimulation". And from our GP; "Your son is just a late developer who looks a bit gormless" – yes, really. The comment was made in response to my concerns about his mouth being open a lot, his lack of babbling, and his delayed motor responses. He was less than a year old at the time.”

When a parent’s “Why didn’t they listen” moment only happened yesterday

“I wish they’d listened to me yesterday! My little boy started school in the Reception Class only last week, on 4^th September My biggest fear is his behaviour leading to him being ostracised. I have tried and tried to communicate this with them, but the school seem to think they know best and are giving little back and are not willing to put in place the regulation strategies that we know will work. Yesterday he lost it and hurt other children as well as teachers. Last night he needed constant physical contact from me and today he didn't want to go into school. Maybe they don't know it yet but through ignoring me they have taken the first steps down a path I desperately wanted to avoid for him. He is collateral damage in the organisations refusal to acknowledge me as the expert in my own child.”

When everything falls apart and your child is taken into care, then this happens

“If only they had listened when we needed help. My daughter ended up in care, and she was abducted and raped at thirteen-years-old. if only they had listened. She was subjected to abuse by different men and then she was placed in an isolated home 60 odd miles away. If only they had listened.”