CAMHs have refused to help, aibu to feel despondent?

[sailorcherries]

I've approached the GP twice with concerns regarding my DS1s (age 8) behaviour, on the second occasion we were referred to CAMHs. After recieving their refusal to help letter I truly believe that the GP who referred us did not do so accurately, as the letter stated his behaviour was within the realms of normal.
We now have no where to turn and I feel utterly hopeless. I see no way out of this. His behaviour is completely awful at times, to the point where I could happily let him live with my parents or his dad (never been together), or I could just walk out. My DP and I are due to get married next week and I'd genuinely cancel the wedding to remove that stress, if it gave us respite.

I have had similar threads about DS, but to recap -

1. We first attended the GP because some of his quirks - refusal to wear certain items of clothes due to how they feel, wearing one pair of shoes obsessively, fixating on certain things (TV shows, points in history etc. Currently it's theme parks and roller coaster construction). It was making home life difficult but the GP refused to take things further as DS was coping at school.
2. We attended a sleep clinic due to his awful sleeping behaviour. He would scream, cry, make himself sick, ruin his bedroom and so on. The specialist told us it wasn't a sleep issue but a control issue, see GP. This led to point one being brought back up and nothing being done.
3. The most recent visit to the GP. DS behaviour has gradually become so much worse. He is becoming increasingly controlling and manipulative, quite nasty to others verbally, is becoming physically violent to adults in the home including myself and my partner, has put a hole in the wall, is self harming via scratching himself and hitting himself, makes reference to killing himself. At times he lacks empathy and other times he is inconsolable because of how sorry he is. It is so completely exhausting as we never know what will set it off.

Most recently we attended the GP and I let them know that things has become worse, told them about the violence and suicide references. They referred to CAMHs and CAMHs have refused intervention because this is normal. They have attributed it to the upcoming wedding and his gran being ill. Whilst I agree this may make things worse, this doesn't excuse his behaviour and it certainly isn't normal.

Just last night we spent 2 hours and 45 minutes doing bedtime. DS decided he didn't want to sleep and that ended up in him punching himself so violently on the legs that he is now bruised, telling me he wished I was dead and he would hurt me, telling me he wished he was dead, breaking a door handle through snapping it off forcefully (from the wooden door, not the metal itself), telling my DP he hates him and so on.

We are all on our knees. I don't know where we go from here. I teach, I know this isn't bloody normal but we now have no where else to turn. CAMHs here don't do self referrals and the GP seems as useful as a chocolate tea pot. My son is suffering and there's fuck all we can do at the moment. I've always suspected slight ASD traits in him, along with anxiety and emotional regulation issues but all doors seem closed to us.

sailor tbf I think CAMHS needs a bloody big shake up as I don't think it is fit for purpose. Dd has had a year of home visits by someone without the necessary knowledge to help her. The support she needs is offered by LD CAMHS but she can't be referred there because her IQ is too high but she can have more of what isn't working and won't work instead. Complaint got me three sessions with LD CAMHS it isn't enough but I will start to complain again to get more.

Op, are you saying he manages to behave totally normally at school, with no issues, and he also manages to behave at his dads, again with no issues, he only behaves like this at home?

OP, firstly this sounds distressing, I hope you are alright. Definitely see another GP and ask for a second opinion (as is your right). Also keep pushing for CAMHS referral and one that states the self harming behaviours and sucidal ideation. It does sound like his behaviour is escalating but CAMHS are on their knees at the moment and you have to be pushy.
Keep taking him back to GP. You say he talks about killing himself but how? In a ‘I want to die’ way or a more detailed plan of how he’d do it? If latter go to A&E.
It’s impossible to dx over internet anyway but it could be a number of things- are there any children’s/ mental health charities in your area that offer counselling? Talking to someone outside the situation may be helpful to him.

You obviously need a diagnosis but does sound like ASD.

I am a 12 year old undiagnosed but school and ed pscyh think ASD and having a nightmare getting help from doctors / NHS. Spent last few years trying and got nothing, just going round in circles like you. First area 2 year waiting list, 6 months in DH took to first appointment, paed said he's NT despite a ton of evidence from school, complained took him back and they saw him with me and agreed it was highly likely he's ASD. Told would need to wait a further 18 months and would be a waste of time getting it as no help attached. Then moved areas so all started again. Our GP makes us wait a month to see them as non-urgent. DS having tantrum so another month's wait. GP then says they never refer to ASD, go via school. Asked at school they say they never refer. So I phoned and they said they reject almost all referrals from doctors and advised going via school. School agree, include masses of evidence, CAHMS rejects the lot as one box isn't ticked. So 9 months in we have got nowhere here and CAHMS also told me long waiting list and you aren't allowed on it until you have done a NT parenting course.

In the meantime school have been sending him home once a week when they can't cope. Thankfully he's fine and home and now I have suggested strategies school can put in place which have helped but its dire. He is very bright too, if he wasn't think he would be out of that school by now, they already told me to find him a different one but there aren't any that cater for kids like him in state sector. Well there's one 30 minutes away if we can get a diagnosis and EHCP but reckon he would be out of school before then.

He does sound like he might be worried about wedding too, might be worth chatting to him to reassure him, sometimes kids worry about all kinds of things. My DS needs to know how everything will be in the future. Mine is best to talk to when calm. Hope you can get help and sympathy. I would agree with calling a doctor / A&E if he is a serious threat to himself or others. If you get this moved to the SEN board you will find others in same boat who may have advice too. If he's not sleeping ADHD maybe worth checking out for - that's a lot quicker and there's medication for that. I don't know much about that other than its often co-linked to ASD but people on the SEN boards will know. If you can get his sleep sorted the rest may improve. Not saying will cure everything but every little helps.

Bluntness he did but cracks have started to show. School refusal, crying in school on the odd occasion. Refusal to go to his dad's now, speaking negatively of him, and displaying some of the behaviour but not all.

He has always loved school and wants to be an architect, engineer or doctor and has, from day dot, told anyone who will listen that you need to be good in school to get there.
His gran at his dad's side (dads mum, who dad lives with) is also quite ill and DS is very aware of not upsetting her because he fears it will make her worse. He was also terrified his dad would leave him, again, at one point so doesn't upset him either.

A lot of reasons to mask.

More so these issues are at 'home'. Home referring to anywhere he feels safe - my house, his grandparents (my parents), with DP, with his aunt etc be it in the house or outside.

Lots of good advice above. I just wanted to write this in case it's helpful info:

I get the impression from your posts that you feel the SENCO would only deal with learning difficulties, and that you think SEN is just about academic/intelligence/learning issues. MH and emotional issues are a category of SEN.

IME Scotland's SEN processes are more progressive in understanding the impact and importance of MH/behaviour/emotional than many other areas of UK. (I'm just going on what I know from statutory documents etc though as I don't work in Scotland).

I think as well as pushing for paeds referral via GP, please work closely with school and SENCO/deputy and get them to engage Ed Psych etc. Most decent psychologists will take in info from outside school and it's very common for some children to be ok in school but really struggle outside of school.

Good luck, your situation sounds very very difficult and you do deserve help.

EregiousPeach his threats are a mixture of both. It can be a simple "I want to die/wish I was dead" or "I wish you were dead" through to "I'll just hurt myself until I'm dead/I'll use medicine to kill myself" without being specific, as he's too young to be specific.
One of the worst was aimed at me, when I was stood at the top of our stairs and he stopped mid temper to coldly tell me that he would "come over and push you(me) down those stairs if you (me) make me(him) go to school". And then he made a move towards me.

Now he is a 4ft8 8 year old. There is less than a foot in height in difference between us.

One thing some people have is a Family Support Worker which school can give you. Would imagine depends on FSW whether this is helpful or not but they do link in to other services. We said no to this as DS is calm at home, agitated at school and having someone come into our home would stress him out, he goes into his own world of 100 soft toys.

Pyard they are very progressive and do place lots of importance on MH. However I work in the same school cluster as DS, we have one ed psych to deal with 5 schools. She is only able to deal with 2 or 3 children per visit, and they are only every 6 weeks or so (if they happen due to outside factors). All of the children waiting to be seen are 'worse' than DS in that they are already diagnosed or in the process of being diagnosed, have very poor attainment, have a multitude of ACEs, family trauma, attachment disorders, have other learning needs, display behaviours in school.

DS, at this moment, isn't anywhere near a priority on her list and I understand why.

We do a lot of work on mental health at home, emotional regulation, discussing emotions and restorative practice but in the midst of a temper it goes out the window for him.
It's like he can't physically calm down.

Ok OP, what you have said suggests that he could be seen to present a risk to himself and others. He is already self harming, combining that with risk to others I should take him to GP again, and make sure that is stated on CAMHS referral.
If he says he will take medicine, hurt himself till he is dead take him to A&E. This is not an overreaction and should help you access the help you need. I’ve done it myself ( not for me, for patients).
And by the way, it’s really not unusual for children to present wonderfully at school or with significant adults then be completely different at home where they don’t feel they need to hide aspects of themselves. It does indicate that he is aware of what is and isn’t acceptable behaviour.
Does he worry about things a lot? And is there anything which seems to trigger self harming episodes?
I’m so sorry you are finding it hard to get help, it really shouldn’t be this hard ( but why it is is a whole other thread).

but in the midst of a temper it goes out the window for him

You need to catch what is triggering him before the meltdown. Once he is in meltdown mode he isn't able to "hear" as you say.

OP, in your area do you have to go through Camhs to get a Neuro developmental assessment? Did the letter from the gp state this? Or was the referral to 'general' Camhs?

Shawshanks so far this week we've had & being asked to go to bed, being asked to get dressed, being asked to practise piano, him asking to visit and specific place and being taken there.

The past few weeks it can be everything from going to school to dinner and everything in between.

A lot seems to be a need to be in control, of anything. Controlling meals, what we do, when he goes to bed, what we do as a family, what is said etc.

If we had triggers it would be easier, not easy, but easier. As it is we're walking on eggshells.

mummy I believe it was the general CAMHs.

I would go back to GP /school and ask them to specifically request a neuro developmental assessment not a referral to general Camhs as he does not meet criteria for them at this time.

OP look up PDA strategies and see if a change in your parenting style helps.
Instead of confrontation, give him limited or non-choices like When do you want to go to bed, 8 or 8.30?
Do you want peas or beans?
Which are you going to put on first, trousers or shirt?

Also look for ASD traits, masking then exploding in his safe space is a big clue. His behaviour is telling you he can't cope, his controlling behaviour is telling you he can't cope his anxiety (not necessarily MH, can be comorbid with other conditions) is through the roof trying to hold it together at school.

No-one can internet diagnose, but from what you've written I'd say he does have red flags for some conditions. In your shoes I'd go for a full private diagnosis with someone 'accredited' to the NHS.
Get Senco's support too in writing.
Diagnostics for autism - he may not be autistic. www.autism.org.uk/about/diagnosis/children.aspx

Bluntness100 Op, are you saying he manages to behave totally normally at school, with no issues, and he also manages to behave at his dads, again with no issues, he only behaves like this at home

Contrary to NT peoples' belief, if he has ASD or other condition, he's not choosing to behave badly at home. For him it's not a choice. That's very typical behaviour for a child with ASD, it's called masking or camouflaging.
Kids with different conditions are like a bottle of fizzy pop, they are shaken up all day but just manage to keep the lid on, at home all the effort of doing that all day is released, the lid flies off and the parents get the behaviour the OP has described.

Blank I have taught, albeit briefly, a child with PDA and quite a lot of it has struck a chord with me in relation to DS.
Most things are given as a choice, however when he realises that this isn't going to go his way he simply refuses.

I have worked in CAMHS previously and there is a HUGE variation in the quality of GP referals. Some write very helpful, detailed referrals. Some will literally write "please see this child. Mother is concerned about his behaviour" and that's it! So it is possible that they are not getting the full picture with regard to the difficulties you're experiencing with your DS.

Whilst it doesn't sound like there is any intent behind the statements he's making about killing himself, he is clearly trying to communicate his distress and it must be very upsetting for you and the rest of the family. The fact that he's not displaying these behaviours at school doesn't mean there isn't a problem. It also doesn't mean that school can't help you. Speak to the Senco or Pastoral Lead at school. SEMH issues now fall within the remit of SEN so this is still appropriate to involve them even if your DS has no issues academically. Ask them to make a separate referral to CAMHs. You need to think about what it is that you want from this though- if you're asking specifically for a Neurodevelopmental assessment then you need to be prepared for a very long wait I'm afraid. The average waiting time for an ASD assessment nationally is now over 2 years. In some areas it's even longer. Has your DS experienced any traumatic events, witnessed any violence within the home or been exposed to any distressing situations as a young child? If so then a generic CAMHS assessment may be more appropriate as early trauma and attachment difficulties can often present similarly to ASD/ADHD traits. The school Senco will have links with your local CAMHs team and be in a good position to advise you.

In the meantime ask the school to open an Early Help (formerly known as CAF), this can help you to access other services that might benefit you and your DS such as counseling, Parenting Support (please don't think I'm insinuating there's anything wrong with your parenting, it's more about giving you strategies to communicate with DS and manage challenging behaviour!) and a Family Support Worker.

@sailorcherries

Could it be transitions that are an issue? It's a well known trigger for many kids with ASD. You can help that by having a visual timetable up for him - a daily one and a weekly one. You can then talk him through it each day. You can use PECS for this too. pecs-unitedkingdom.com but if you Google "visual timetable" you'll see lots of examples. (I've attached a bedtime one - do you have access at school for your SEN kids?).

The control is to reduce his anxiety over things he feels he has no control over. A limited choice can help, but I would guess visiting his Dad at the mo would be quite stressful for him too due to his nan's ill health and feelings of loss. If you have access to Social Stories at school it might be worth seeing if there is anything about illness, separation, etc that can help explain things to him. Whilst he is picking up the distress around him he may well struggle to innately understand why, or make the connection.

He has just lost the plot, kicked my mum and hit my dad all the while screaming ... Because they didn't have the pizza he wanted.
This then resulted in him not being allowed to stay over as agreed, because he has assaulted them.

Toddler DS is absolutely terrified.

I'm just broken now.

@sailorcherries

I just wanted to offer a handhold. Have you been on the SN boards for help?

I think though you need to also see the GP (not the same one as before who seems useless!) for support for yourself.

Take him to A&E if you are able to get him there & explain the behaviour. Be forceful. If you can't get anywhere with CAMHS your best bet is to go privately. The first port of call for CAMHS is always parenting classes, so seek out behaviour management classes for challenging or SEN kids, this shows CAMHS you are serious about helping yourself. Learning behaviour management strategies is basically what you will need to do anyway because nothing else will be forthcoming sadly. Also seek out parental support groups. Personally I found these things invaluable. I have 2 kids with ASD & have ADHD myself btw.

Oh my goodness. I could have written this myself OP and I am so sorry you are all going through this. We were in Scotland and our first CAMHS experience was when our daughter was 7, I had concerns for years, but they refused to meet with her until she was 7. We were sent on our way, with an 'everything is normal'. Fast forward to her being 10 years. We moved house to another region of Scotland and she told the school nurse that she wanted to kill herself. Immediately she was seen by CAMHS again (but new area obviously) and they took it really seriously. Our daughter is bright, but suffering dreadfully-as were we. She finally got an ASD diagnosis after about a year.

Unfortunately, we then moved out of the country and it has been impossible to get her support. But now we are aware, things have improved immeasurably. I can't suggest moving obviously, but there is hope out there. It takes one medical professional or teacher, someone out with the immediate circle to see the danger they present to themselves and things can change.

I'm so sorry you are going through this. The exhaustion and fear can be overwhelming. You are not alone. X

I am worried that people are talking your son into having ASD before he is even assessed. I think you can self-refer to CAMHS- can you not do that? Great that he is ok at school. What do you think a label/ diagnosis would bring to current situation?

Could you ask GP for an appt with community paediatrician ( you go to the hospital clinic but they deal with behavioural issues etc )