To consider stopping work all together for a child who has ASD?

[13MAPARTHELL]

My 5 YO has very complex autism & pathological demand avoidance (not necessarily in demands but rooted in autonomy, very extremely)

Life is extremely difficult & things become worse as he gets older, I have tried to fight the battles for the EHCP, school support & so on & have done everything correctly, but feel I am getting nowhere.

My child is really troubled honestly, violent, unkind and extremely anxious.

I have little capacity for work mentally, with my efforts going there rather than on my child. He is very complicated and layered & it requires time, energy, extreme patience to even start to deal with him.

He keeps refusing school, im getting many calls from the school, he is suspected dyslexic & work are getting pissed off with me, the pressure to not let them down, means I am not 100% being there for my child, as in, having to force him to school when he’s extremely anxious, because i HAVE to be at work.

I worry about his mental health as he gets older, if i cannot put 100% into parenting him in a way that reflects his additional needs, and we do not have any support.
I dont want him to grow up to be a dangerous, or anxious, depressed adult.

Right now, it feels peak time to get learning in place catered to his regulation, but I need to be on the ball ALL of the time, calm and ready to fully understand him & create a lifestyle where our family can be happy.

I am looking for anyone’s experience in doing this, its sad for me, but hes my child & he needs me

It is a difficult situation but I think you also need an outlet. Your entire life can't be managing your son's behaviour/ difficulties. You will burn out and be miserable. You won't be able to be a saintly parent (I mean this in a kind way, not sarcastic) able to meet his needs all the time if you don't have a life outside of it all. I'm also not sure it's great for your son if you are always there - he needs to be able to work with other adults too. If your job is stressful, I would look for something less demanding (any job that gives you a sense of purpose and some interaction with the outside world). Or go part time. I think the big picture is that you could give up your job, your son needs you to keep his life on track and then you get ill/ have an accident etc and the wheels would come off as his life has been so cocooned. I would keep working to some degree for your sanity and your son's long term wellbeing.

(also, keeping him off school due to anxiety is not a great long term strategy. It creates a loop of avoidance and more anxiety. The only way I would keep him off is while a situation that needs resolving is resolved (a day or so). I would not keep him off because of general anxiety over school. That only makes it worse

Lots of parents with disabled DC can’t work.

Could you look at parental leave or even sickness absence to buy you some breathing space to consider longer term?

You say you have battled for an EHCP etc. but aren’t getting anywhere; where are you in the process?

What are the many calls from school about/asking?

If DS can’t attend school, is alternative provision in place?

I disagree somewhat with the pp. While there is a level of anxiety you can push through and continue to support DC to attend, once you reach a certain point, forcing DC into school, into an unsuitable environment with inadequate support, causes further trauma and leads to more complex needs in the longer term.

Have you had social care assessments? A carer’s assessment for you and an assessment via the children with disabilities team for DS.

I disagree totally with sparkler poster. Anxiety from school will get worse and worse by keep going in. The way you describe him you would likely be eligible for DLA and carer which would help you financially if you were to home school. I took my girl out (diagnosed ASD) after 6 months of school age 5, best thing I ever did! We are 2 years in, she is happy as a bee and her due to home ed her younger sister this year also. School is not for all children. As you say he needs regulation and support. It sounds like he doesn’t need school. There are so many home edders and so many have ND children. Whole other world out there. Any questions just ask xx

I’ve not been able to go back to work after having dd4. She’s autistic with demand avoidance and her anxiety is such that nobody else can pick her up except me and I can’t drop her anywhere on time because she finds transitions so difficult.

Personally, I wouldn’t deregister and EHE. Instead, if school is inappropriate I would pursue EOTAS/EOTIS via an EHCP. An EHCP can provide via more provision, including therapeutic provision, than the vast majority of parents can afford to fund themselves.

Eotas takes sooo long as well as ehcp. I trained as a teacher and worked for years in a special school and mainstream before I had children. I am so glad to be out of the system. EOTAS you still in the system and logistics are a nightmare also there is no saying the child will want to do what is provided for them. This is my point of view. System doesn’t work for many children. We are skint and we don’t get DLA but I wouldn’t change it for the world as my kids are happy.

Yes, EOTAS/EOTIS takes time, but DC don’t have to forced to attend school in that time. And if DC can’t attend school, there is section 19 provision in the meantime. If you have to appeal, you can request hearings are expedited.

Logistics do not have to be a nightmare.

EOTAS/EOTIS packages are bespoke. They are based on the individual child and their individual needs. It can also be child led and whatever the child wants to. The possibilities are endless. The scope of what can be provided is far, far wider than many realise. It isn’t just limited to what the LA wants to provide for the CYP.

It is great you can afford all the therapeutic support required. Most can’t.