To refuse early help referral

[Mumma2024]

Two children with ASD and ADHD diagnoses. DD 10, DS 6. DD is suffering hugely with her anxiety, it is crippling her and we are having a lot of violent outbursts. We have previously been on CIN under the disabilities team who couldn't offer anything helpful and with intrusive visits to boot.

What DD needs is to be under CAMHs, who keep refusing her as crippling anxiety is a part of autism. She's told me 3 times in a matter of weeks she does not want to be alive anymore. School want to do a referral to early help, to support me at home. What she needs is health support. In 10 years we've had a fairly revolving door of support workers/social workers etc. Who have virtually no understanding of the complex needs of both children. It is always pointless. I feel she needs proper mental health support and early help is just poorly addressing the symptoms and not touching the causes. I've been told everytime that we are well out of their knowledge set.

I feel if I refuse another early help referral then it will just be used against me, when in reality I've learnt that as a lone parent to two high needs children I have to be careful what I exert energy on and it's hard to justify exerting energy on something that has never helped.

AIBU to refuse? A small part thinks maybe it will lead to actual help but it is just exhausting.

It's not out of the realms of possibility that it would be discussed or proposed as an option. I worked with a family with 2 parents one WFH and one worked a distance away and was out of the home 12 hours a day. The WFH parent couldn't cope with the needs of the kids (SEN) and they kept being referred to us because the family were struggling but they wanted social care to pay for childcare, school taxis etc. It's just not the role of social care to take the place of a parent who is present and capable, which paying for childcare and school transport is. We had to keep pushing back. I did suggest the WOH parent could look for a role closer to home which they thought was outrageous because they had bills to pay. But what would most families do in that situation? What would you expect of them?

If only early help or social care could make any difference to the speed or effectiveness of CAMHS referrals :(

i voted AIBU because I think you should engage with EH. I appreciate you want to protect your children from intrusive visits that don’t help but I have heard really good things from
people who have had EH (not all are great, but your one could be so worth at least investigating) and you will also show that you are keen to whatever it takes to get the right support for your children.
I have an ASD/ADHD 11 yr old who
regularly tells me they want to die. Turned down for EHCNA, refused the secondary school we thought would support him best educationally (despite being our closest ffs!) he is really struggling and I am constantly at the school, e-mailing, phoning - it is exhausting, especially bedtimes when he doesn’t want to go because it’s school the next day, and the mornings when he doesn’t want to get up and ready. So to be coping with that x 2 is an incredible feat and I totally get why you haven’t got the energy to cope with another service that may burden you rather than help. But I have heard experiences of EH being really supportive so if you do engage then hopefully you will get someone who understands and can support you to getting the right help for your kids. Good luck 🤞

If think this might be area dependent?
We had early help.my don has complex learning disabilities and autism in n a special school.etc
And we were assigned a social worker he was a children with disabilities social worker
I know what you mean Op in reality there is only so much they can offer you
And it can be stressful having meetings when you know that the outcome won't change .

Early help is all that nursery would offer me when DS was struggling (despite me knowing he needed a CDC referral 🙄). I figured it couldn’t hurt. It wasn’t particularly helpful if I’m honest but I would rather try something new than keep hitting my head against a brick wall and expecting a different outcome.

I am sorry you are struggling. My daughter's anxiety worsened in her teens - hormones play a role.
One frustrating thing is that when a child is neurodiverse all anxiety can be written off as part of that. We discovered (only because we have private insurance) that while my daughter has ADHD she also has PoTS one part of PoTS which can be triggered by puberty (mostly girls) and their autonomic nervous system does not develop at the same time as the result is they get noradrenaline surges making their heart beat fast and the physically feel anxious plus they are on high alert 24/7 making them exhausted.
Re the violet outbursts, one parenting course helped me suggesting sit down in a period of calm and help her work out what physical changes are happening in her body before she loses control of her emotions. Does her heart beat fast? Does her voice get louder, does she feel more anxious? helping her and you to recognize the signs she is escalating and then encourager her to take a break from the situation. Also I think encouraging her to jump on a mini trampoline to get out the physical frustration and encouraging her to sing to get out the verbal frustration - feels weird at first but helps.

Things change so fast and my ASD son is now adult, so I don't know how it works now but would accepting Early Help exclude you from pushing for a CAMHS referral? Might Early Help admit her needs are beyond their spec and then write a referral in support of her transfer to CAMHS?

Please don't think I am under-estimating how hard it already is for you as a single mum with two SEN children, but ime, the only way forward was to assume CAMHS was utterly useless and would never materialise, and to become a child MH armchair expert myself. Read up on best ways to soothe her, best self-soothing mechanisms you can teach her and then put them into practice. I did this and it was exhausting with one SEN child and a partner, so it will be a massive battle and energy drain on you doing it solo, but what are the alternatives when the system is so stacked against her getting the help you both need and deserve?

I did a LOT of CBT with my autistic son from a very early age. We are told CBT doesn't work on autistic people but I couldn't find a better method of intervening with his rigid negative thoughts. He was insistent it didn't work at all. But I saw the changes. It just took years instead of months for the processes to settle in. He now in adulthood uses CBT techniques all the time to overcome anxiety and intrusive thoughts.

If you want, DM me and I will hunt out all the stuff I did with DS.

@Ohnoooooooo - that is a great post. That is the sort of thing I did with DS. Lots of stuff that seems weird but works.

I quickly learned not to give a toss what other people thought about my methods. I was too soft a parent, too hard a parent, too weird a parent, too square, too helicopter, too neglectful etc etc. Which all translates as: your parenting of ND children is different from my parenting of NT children. Well, duh.

If it's the anxiety that's the biggest thing just now and you're not getting anywhere with school etc I would consider trying a private counsellor who specialises in children with neurodivergences. I know there is a cost for that but if your child is genuinely struggling to the extent you describe I would do that rather than waiting around for the revolving door to stop. I say this as a parent of 3 ASN children too and also as someone who accessed private therapy for similar reasons.

RowanMayfair · Today 08:30

MamaAlwaysknowsbest · Today 08:04

Fidgety31 · Yesterday 23:19

I was in a similar situation and I declined early help support as in reality there was nothing they could add to what I was already doing.
They suggested I give up my full time job (as a single parent ) to be at home with my children ! So I knew from then on we would not be compatible .
Early help is voluntary so you are not obligated to accept .

They suggested that? And who is going to finance all this?
It's not out of the realms of possibility that it would be discussed or proposed as an option. I worked with a family with 2 parents one WFH and one worked a distance away and was out of the home 12 hours a day. The WFH parent couldn't cope with the needs of the kids (SEN) and they kept being referred to us because the family were struggling but they wanted social care to pay for childcare, school taxis etc. It's just not the role of social care to take the place of a parent who is present and capable, which paying for childcare and school transport is. We had to keep pushing back. I did suggest the WOH parent could look for a role closer to home which they thought was outrageous because they had bills to pay. But what would most families do in that situation? What would you expect of them?

,,,,,,,,,,

Hi Rowan,

I would suggest that one of the parents has to work and the mother obviously has to be at the child after school and yes, I would suggest the father to be able to come home every night and be the pillar of strength for her and the needy child. And I would suggest that some things are given for free to the family ....

I come from a culture where there is virtually no help for anything , so before we do all things, we count the money and the options, as Jesus said: count the cost before you start following me. Pretty much the same wisdom for anything one does in life. Things do cost money. And where is then the golden middle for families who cannot pay their way as they should and have kids with disabilities - I hope professionals have the answer to that.

From a mum with a child suffering severly I would say take whatever help is availble, like someone else said it can open doors to other services. Waiting lists are huge and i hate to say, CAMHS do not always provide adequate support either. I missed if the school are providing support also? If not see what they can do, a lot of schools will have interventions they can work on with them.

Keep note of all the difficulties and how it is affecting your child and the family, how it affects day to day life and the barriers it creates. If your child harms themself because of it take them to the hospital, not everyone will agree because of how busy they are but the earlier things are dealt with the better, the CAMHS crisis team should get involved then. My daughter is in a very bad place right now we have had to fight so much the last few years, 2 overdoses, a&e for deliberate head injuries yet still nothing adequate had been offered until she was admitted to hospital in a different borough last week with an amazing doctor who is pulling out all the stops to make sure people are doing what they are supposed to.

I meant to add, get on the waiting lists its better to be in the queue and turn it down if you dont feel its right for your child rather than join the queue when things have become much worse and having to wait - that came from a health professional.

The thing is, there's nothing to lose by trying. We haven't used EH, but we have had CAMHS, ISS, SEN caseworker, and now are on our second children's disabilities social worker. The ISS lady and our new social worker are absolute whirlwinds of brilliance, and their persistence and drive has worked wonders for us.

What I've learned from all this, I suppose, is it's not about which service you have access to, it's about how good the person you get is. You may find you get an epic EH support worker who really helps - may as well try!

Those who have been through CAMHS does it actually help ? Do they provide counselling and help within the school environment ? They seem overwhelmed with referrals atm and the waiting list is long ? Just wondering as we have a family member awaiting referral .

I have never known CAHMS achieve anything for any pupil I worked with in 6 years of working in SEND, I really hope and want I believe there are success stories out there but I have never heard one and that’s from the very small sample of children who actually got seen by CAMHS. Very unfortunately and wrongly I think you might have to accept that help is not going to come and do anything you can in the meantime.

often interventions defer to the school anyway. They are essentially the service that is in the best position to deliver support so I would work with them at any rate.

@Sureaseggs44

ive never known CAMHS come to school, we got stuck in a ridiculous bind once where a pupil was refusing to attend CAMHS but they couldn’t send anyone out so it was assumed he was alright cos he wasn’t coming (they were not alright)

An EHCP can provide support with MH without the need to go via a normal CAMHS referral. With an EHCP support can be in excess of what is otherwise typically available and without the need to sit on the normal waiting lists. Although you might have to appeal. So request an EHCNA if DD doesn’t already have an EHCP - IPSEA has a model letter on their website you can use. Or request an early review if she does already have an EHCP.

I sympathise OP. but I just take whatever they offer

there is no state funded mental health support for children in the Uk - that is the reality. That is what I've seen - we have been an ermergency referral for a year waiting for help.

I have it the opposite way, my dd is 15 and the school put a referral for a ASD assessment.
That was declined and instead she was referred to CAMHs (she has already seen them 2 years ago after a 2 year wait and because of covid and the long wait times she was sent to group sessions which were totally inappropriate for her!).
It is clearly obvious to me,her teachers,the family support worker the EP that she has ASD apart from the people that are supposed to know.

we had a family support worker and she was a good listener but unfortunately I knew more than she did so wasn't great on the help part.

This is terrible IMO. Suggesting that the parent who works further away should just magic up a job closer to home. No one has a big commute for the fun of it.

On the one hand you say there was a parent who was present and capable and yet on the other hand you say they couldn't cope with the SN of their children - so which is it? are they capable and coping or are they not coping? What is the role of social care if it's not to help families who can't cope with their SN children?

School transport should be provided for children with SN if they aren't able to walk to school - are you saying these children could safely walk to school? Finding childcare for children with SN can be really, really difficult did you not help them with that?

Far too much 'pushing back' on anything and everything in this country sadly.

Obviously I'm not going to give details about the family but I'll say

• for professionals, the type who have long commutes and big salaries, they often have large outgoings. They usually have options in relation to work, and could earn less and have smaller outgoings if they choose.
• if the children were entitled to free school transport they would have had it, not all SEN means disabilities and not all means entitlement to funds
• parents can be present and capable (and I was referring to both parents not just the WFH one) and also not manage things very well. I didn't actually say they couldn't cope with the SN. There's more to parenting and coping than that. Sometimes it's a simple as not being able to get all your kids out the door on time without screaming rows.

the role of frontline social work isn't to 'help' families with children with SEN, no. They don't have the budgets for that. If you disagree with this then vote accordingly but that's the reality. The role is to safeguard children where the care they are receiving will significantly impair their life chances if no support is provided. You say far too much pushing back but sometimes there is too much expecting the state to step in and parent for you.

Just as an aside, we were quite happy with our Early Help Worker, she was kind, offered a listening ear, and supported with the admin if arranging and documenting TAF meetings, which held various parties to account and kept things on track. I was struggling to juggle all the balls as I have one severely ADHDer in a special school, and one AuDHDer who was really struggling to attend school.

There was an incident with one of them that lead to an arrest and we were escalated to SS. I was very clear that we really needed to keep our EHW and was assured we would.

SS visited once, and said they could offer nothing more unless we wanted to consider a Section 20, which we didn't, so they closed us. It then turned out that we had been closed with EH too, and despite me asking we were never re-opened.

TAFs never happened again, as no other professional found facilitating them to be in their remit.

I'm sure I could ask to be referred again, but I have decided I haven't got the bandwidth at the moment.

It's just bloody stupid.

My advice would be to work out what COULD help you and your family. Maybe an autism parenting course? SEND play sessions? Play therapy? Respite? Support with resources? Furniture needing to be replaced? Go into the meeting and ask whether any of these things are possible.

I liked having a EH worker, she was someone to listen, she didn't do much work with my disabled children but she did with one of mine who was quite anxious and I think that was helpful for him. She also coordinated meetings with schools and I think having someone external meant schools were more proactive. When she first came out I was pretty anxious and she met with me and that she would come the next week and I must have pulled a face, and she said she didn't need to, it's all voluntary etc. if asked for the support though, I have access to CAMHS and neurodivergence and many others, but I was just struggling under the pressure of everything. I have two children with multiple diagnoses. Like for us, everything looks and looked perfect but I have just struggled to deal with the pressure of doing everything.

You're right they are no help