'Overattachment' - desperate for advice

[Holly221288]

My 9 year old son is autistic with a PDA profile and severe anxiety. He hasn’t been able to attend school for over a year and is now completely house-bound. He can’t tolerate any demands at all, including basic things like getting dressed or leaving his bedroom most days. His world is very, very small, and he relies on me for constant emotional regulation. By relies on me, I mean we are together 24/7 except from his 5 hours a week Mindjam and when I shower/go to the toilet (although even this causes upset some days).

We’ve been referred to the DTAT team after CAMHS have discharged us because they can't help. I spoke to the worker today and she said she has never come across a child like mine, even in their highest-need cases. I know she didn’t mean it badly, but it absolutely knocked me. It made me feel like I’m dealing with something unheard of and that there’s no help out there.
She said they will assess next week, but the only thing they usually offer afterwards is NVR (Non-Violent Resistance). I know parts of it are meant to support parents, but a lot of the behaviour-based strategies are completely unsuitable for PDA/autistic anxiety and would make things much worse.

I guess I’m just looking for anyone who has been in a remotely similar situation — a child who is house-bound, has extreme anxiety/PDA, and where traditional behaviour approaches aren’t appropriate. Did anything help? What kind of support did you get? How did you cope emotionally?

I love my child so much but I am exhausted and scared that nobody knows what to do. Any advice or experiences would be so appreciated.
Thank you.

@JC19827 yes I had to give up work in September last year when he became unable to leave the house.

He has two older siblings (13 and 15). My eldest is pretty unaffected as he is super sociable, able to go out with his friends etc but my middle child is understandably very resentful and their relationship is awful

Also just to clarify he has an EHCP with EOTAS however only accesses 5 hours of Mindjam because he won't allow anyone in the house or engage with anyone online. He is on a CIN plan which I requested in the hope of getting support but all it seems to be is a monthly teams meeting where we discuss 'progress'. The social worker comes every 6 weeks and has been in the house twice for 30 minutes.

Complain about CAMHS. They shouldn’t discharge, they should adjust their offer so it is appropriate. Or refer to a more specialist CAMHS team as well as the DTAT. Have you also had a carer’s assessment?

Has DS tried medication?

This isn't a rare presentation for DC with EOTAS/EOTIS.

The route to more support is a better EHCP. Does Mindjam work for DS? If he can engage with Mindjam, what about more hours? Or something similar? What about other therapeutic provision, even if it is indirect at this point? What about provision that doesn’t require in-person or online engagement? What about a budget for DS to use in a self-directed way?

What does DS do in his room during the day?

For DC2, are they known to your local young carers service and have you looked at Sibs?

@2x4greenbrick thank you for replying. I did put in a PALS complaint about CAMHS but they were happy with us being passed to DTAT. CAMHS said there is nothing they can do because of his age and they don’t feel I’m suitable to deliver therapy to him.

He has recently started ADHD medication and we are gradually going up the doses.

I haven’t had a carers assessment.

Our LA limit is 5 hours with Mindjam. I put in a personal budget request for self directed learning and it was all refused. Submitted a JR to which my solicitor agreed to pause on the basis of an emergency EHCP review (which I agree with as JR is almost pointless because the EHCP is aimed at a school attending child with no mental health needs). They have said this will be at some point in the new year

It is reassuring to hear this isn’t as rare as I keep being told.

Thank you again and sorry for the long message.

@2x4greenbrick sorry just realized I didn't answer all of your questions. I have encouraged the older two to access the young carers service but they won't.

To fill the days, we do some interest based learning each day, watch things together, he will game if I watch, we build Lego, do some creative stuff if he is interested.

Once stable on ADHD medication, it might be worth considering medication for DS’s anxiety. It isn't necessary for all and it doesn't work for all, but for some it can make a big difference.

Following the emergency review, you will get the right of appeal. You should appeal. It is irrelevant what your LA typically provides or their unlawful blanket policies of only providing 5 hours. More can be provided, but sadly, it often takes an appeal (and then sometimes enforcement). If more Mindjam won’t work for DS, there are other provisions which tap into an interest in gaming. Same for creative provision or a budget to allow DS to choose what to do. There is a Lego subscription service I know people have had funded as part of EOTAS packages. My own 2 DSs with EOTAS/EOTIS have bought Lego out of their budgets.

JR could look at enforcing s19 provision. That is separate to the EHCP.

Therapeutic provision, including indirect provision, can be included in F of the EHCP. That way, you aren’t limited to what CAMHS can or will provide.

I would look at a referral to a different CAMHS service. DS1 was originally seen by tier 3 CAMHS. They were as much use as a chocolate teapot. Then he was referred to tier 4 service and then a more specialist tier 4 service. They were better.

Ask the DTAT about a carer’s assessment.

@Boattum he does not have a significant amount of screen time full stop. He is only interested in things we can do together so doesn't sit glued to an iPad etc. His father has been absent from birth.

@2x4greenbrick thank you again so much for your help.

I would absolutely consider anti-anxiety medication once he is stabilised on the ADHD meds. Thank you for the suggestion.

We do already have a tribunal in for April which is appealing the original EHCP, I am not sure what happens to that now an emergency review is happening. The LA are very determined that the only way forward is for my son to build relationships with tutors/mentors and access tutoring before specialist school.

Could I ask how you got referred to a different tier of CAMHS? He has been on the DSR for the last year but we still weren't offered any specialist support other than a keyworker. He has now been removed from the DSR.

Thanks again

Building relationships with others is a long-term aim, not necessarily to integrate into a school placement, but in general. That doesn’t mean forcing DS, running before you can walk, or not providing the support required now.

Reviews held during the appeal process can feed into the WD of the current live appeal. Alternatively, if the LA does issue an amended finalised version of the EHCP, SENDIST is making some who have finalised amended versions submit a fresh appeal because it supersedes the EHCP subject to appeal. Sometimes these are then consolidated with the existing live appeal, but not always. Yet other times, SENDIST is allowing the exact same circumstances to be incorporated as part of the existing appeal without a fresh appeal being submitted.

I would focus on the appeal and WD.

I would challenge the removal from the DSR. Has a CETR ever been mentioned?

DS1’s MH deteriorated despite tier 3 involvement. At this point DS was displaying serious self injurious behaviour and needing within arm’s reach care 24/7. It was clear the service didn’t have a clue how to treat him. He was far beyond their experience and remit. It was at this point I insisted on onwards referral. This led to DS1 attending a CAMHS unit as a day patient. The tier 4 service then referred to a more specialist tier 4 service when we had exhausted the typical treatment options the psychiatrist was comfortable using for PTSD for a child DS1’s (then) age and wider medical needs. He would have been admitted had he been older &/or without the complexity of his medical needs.

Have you reached out and joined a home education support group. Facebook search home education name of your town or large town close by. Parents in these groups have a wealth of knowledge, fellow children with pda or school trauma. But you will get emotional support and advice, I joined 3 groups and 2 I am still in

Be aware not all EHE groups are happy for those with AP or EOTAS/EOTIS to join.

Itd good to buy him something to listen to. Opera is not good just for adults but children. But he must choose what he likes. All the best regardless.

My daughter was the same 18 months ago and we’re finally seeing come out of burnout. 18 months of accommodating her every need and we’re getting there