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.

I have a daughter who is extremely violent and I spend hours each day dealing with a child who is a fizzy bottle of pop and explodes as soon as out of school. I am a human punchbag as well as her siblings. School are crap! I have fought for 4 years to get her on the maat pathway (which we have just been accepted on) camhs won't see her - they have basically said she has to stab me or do some serious damage first we do low arousal approach at home which works better as she is demand avoidant. Our camhs have said to get a private asd diagnosis and schools cannot refuse them! As long as NICE guidelines followed then why would they dispute it, would a school question a cancer diagnosis made privately or not???? Sick to the back teeth of some schools playing god with children's mental health and not referring to services or listening to parents.

CAHMS in our area is at crisis point. Dd's been on the waiting list 2 years in May. To be quite fair when she was referred previously in "priority urgent" level she was only waiting 4 months.

I would pursue PDA parenting strategies whilst you go back to the re-referral route. If the GP didn't write the right information in the referral that's all CAMHs had to go on.

desperately a label or diagnosis would give access to support for him and us. However I'm not after that. I want help with dealing with him, I want someone for him to talk to and offload in a safe way.

Op unfortunately if you are like us - we seem to be in a void as not severe enough for camhs (why I don't know) but too severe for early years etc. The whole system is shocking and it is a postcode lottery. Have you looked at low Arousal approach? Also look up support groups (if you are on fb the pda one is good also challenging vcb with Yvonne newbold) it's a very isolating process and Unless you live it every day it does feel like no one understands. Feel free to pm if you need any support. I totally understand how you feel x

Ps re the diagnosis - seek one!!!! It will open doors to services. We were gullible really as school kept asking initially why did we want a diagnosis as it wouldn't change anything. School have done nothing to help whatsoever so we have been fighting now for years to get my dd on the pathway and now school are saying they won't do anything until my dd has a diagnosis. The issue with my dd is that her needs are not being met at school and that causes the issues at home. It sadly is the same for many children. It is not you ds that needs to change it's the environment around him that does x

a label or diagnosis would give access to support for him and us.

I am afraid this is not the case, esp of he is flying academically.

I have an 11 year old with ASD and severe LDs and very challenging behaviours. DD attends SS but apart from that there is no help at all. No support, no therapy of any kind, no respite.

If getting him referred to cahms is such a battle, I would say it is not worth having. If there was a diagnisable condition such as ASD, you would get a dx a few years down the line but no support. Our local cahms only has funding to diagnose. Afterwards it is a discharge and you are left to yourself.

sorry to be so bleak but this is life in 2019 Britain for children with neurodevelopmental/ mental health conditions/ learning difficulties.

I agree there is no support out there, and very little help with how to deal with them yourselves.
Everything I know has come from the internet/books.
There might be parent led support groups in your area but you don't really need a diagnosis to access them.

@sailorcherries I haven't got a lot more to add other than a supportive handhold. We were in a similar situation 18 months ago. Camhs refused to help as they said my ds was a clear paediatrics referral and we too got bounced back to the gp.

We were 'lucky' that school is where most of the meltdowns & harming happened so they pushed through referrals. We now have a diagnosis but it hasn't really opened any doors to support him. Sorry this is happening to you.

We are finding our way through similar circumstances with our DD at the moment. Although her behaviour is not as challenging as your DS's, she was becoming very distressed emotionally (hearing voices, self-harming, eating problems, sensory issues etc). She is doing very well academically and is artistic but was increasingly finding the school environment too much to cope with.

We went down the route of seeing a clinical psychologist privately - she identified possible autistic traits and recommended a referral to the community paediatric team for a neuro-developmental assessment. This was what made the difference for us in terms of understanding what was going in and helping us to make decisions to help her.

We are in Scotland and in our area, referrals to CAHMS seem to need to come via school, although our GP did make one for us which was turned down (we were put in touch - again - with the primary mental health team through school although I have to say that this has not helped much). However, the primary mental health team do have the ability to refer to CAHMS so I think it is worth going through this stage.

Unfortunately, CAHMS and the primary mental health team seem to regard the kinds of behaviour DD shows when distressed as being normal for someone with suspected ASD and not a mental health issue.

Does your DS have a child's plan? That might help in getting a way forward. Ask the school to organise one.

Unfortunately, like other posters, we are finding that it is very difficult to access help because services are so stretched. (We have been waiting more than six months for the neuro-developmental assessment with no word of when it might actually happen.)

My best advice is to see a clinical psychologist privately, and push for help through school and a child's plan. Even though he is doing OK at school, there is obviously a problem and the child's plan approach is to look at all aspects of the child's life (GIRFEC/SHANARRI approach) not just school.

In our own case, moving DD to a different school with an environment more suited to her (less noisy, more nurturing environment, etc) has made a huge difference to her distress levels as home. Basically, although she seemed fine at school, she was masking and the pressure of that caused problems at home.

Hope some of this helps.