The mess is making me suicidal

Hey Op, I have no advice or experience. But from one parent to another, I honestly have so much respect for you being able to handle what you do. Mums with children with no additional needs struggle, I honestly can’t imagine what it’s like to handle those needs on a daily basis, whilst juggling those of everyone else in the household, including your own.

You absolutely cannot let yourself get to the point of burnout. It’s not fair on you. And it’s not fair on your 7 year old. Please don’t feel guilty accessing more intense support.

Big hugs, you’re truly a superstar (hope that doesn’t sound patronising) and I hope you’re able to find something that eases the pressure for you all.

My nearly 5 year old is very distructive he has been diagnosed with autism and has very high sensory processing disorder, we have adapted the house to help with high energy such as spinning chair, trampoline, ball pit in a dedicated room where he can throw the balls around wherever he likes, I agree with the other comments regarding seeing an Occupational therapist, we took our son to see a therapist who also advised a major sensory diet, which should also include lots of messy play to help reduce smearing, we have a big tuff tray where he sits in it and plays with kinetic sands, slime, playdohs, or he can throw confetti up in the air in the tray tray etc
I would also try to find things he enjoys watching on YouTube some autistics enjoy ASMR some might not (marble runs, trains, running water, hamster maizes, rollercoasters whatever catches his eye)
Also makes sure he is self regulating as much as he needs, lots and lots of hand flapping, join in with him if he is ok with that
Keep trying to communicate with him using visuals if you can and that he has access to alternative communication methods and be consistent with boundaries

He might be trying to communicate with you that he needs to get out of the house? Take him some where where he can snap some fallen branches of the trees, away from people though
My son becomes more destructive as we are getting ready to leave the house because of his transitioning issues and sometimes he might just be over excited to get somewhere but we just get him out as soon as we can before it escalates and take him for walks to places he wants to go and dont forget the headphones if he will wear them

I'm sorry to hear that you're going through this. I have a friend who had similar issues. Her son was only slightly older than yours (11 - still at primary) when she realised she really was at breaking point and that the only option left to her was residential care for her DS. He was physically too big for her to handle in public and was a danger to himself and those around him as he flung things off shelves in shops etc.

The first months were tough and she struggled with the guilt but as time went on, she realised it was best for both of them. She gets to enjoy quality time with him as his mummy (although that's been hard due to Covid) and he benefits from being cared for by people who are on a rota so get time off and so can face his needs with patience and care, something that she was struggling with through sheer exhaustion.

Her mental health is so much better and she realises that her fear of taking this step as it felt like she was 'giving up on her son' wasn't justified. Now she realises that his difficulties meant he'd never have been able to stay at home long term and the care he receives now is much better than she was able to provide him with come the end.

This sounds unbelievably hard. I have experience of working with adults not children with similar needs. You must be beyond exhausted. I really think you need to consider residential care for him. It sounds like it's too much for you to cope with as a family.

Have you looked into hiring a board certified behaviour analyst?

its interesting that no one has suggested direct payment carers, who can look after in house and also tale out and medication and have gone straight to sending away, there needs to be a middle ground somehow, if he won't go out on daytrips with carers for respite how on earth would he respond to that?? x

Big hugs OP, my mum went through similar, my sister is severely ASD, in care now early 30's,she was so sleep deprived she said to a health visitor once, if you don't give me something to help her sleep, you can take her! people don't realise how desperate and ill it can make you.

What does he get enjoyment out of? any tv programmes he liked, i know you said he doesn't respond to toys or Ipad. my sister used to love making things like plasticine. anything like that?

First thing i thought of reading that was perhaps medicating throughout the day? not just for the wider family but him too, him just tearing through the house being destructive as his main form of stimulation doesn't benefit him at all so don't feel guilty. onesies to help with smearing perhaps. im trying to think of more suggestions.

I have a 14 yr old child with challenging behaviour and autism. 6 months if shielding had left us on our knees. You are .amazing to have coped so well for so long.
You desperately need a safe bed of some description. A safe space would be best but urzone do a good tent bed. Contact heather at urzone for help. She is fab . And new life charity can loan beds if you are desperate. X

I wasn't meaning you @Embracelife ,you have been through it ,it's the posters who have no clue as to what life is like with a disabled child ,who keep blithely suggesting it that I find upsetting

I always looked as it giving my dc opportunities to grow and learn . Speak to parents locally who use overnight respite. One plaCe i wasnt sure initially but had to give it try... after several times dc would get excited to go in.
Other people i know have used residential school and dont regret.
What are benefits to dc?
Many.
What are benefits for whole family? Many. You recharge.
It does take time to set up.
And Or get more hours of support in your own home. That you can easily ask for. But can feel intrusive with extra people always in your home.

Ask for more hours respite. State your case.
Dont discount overnight
Look into all options.

You can start with 24 hour sleepovers for your child...this is possible and my ds did from age 10. It was good for him and the rest of us.
He didnt move into supported living til 21 but the daya weekends a
ANd weeks of ovetnight respite care were essential.
There are spevialust foster carers who take kids in their homes for 24 hour respite. And specialist settings. Carers in your home could allow you to go visit eleswhere leaving your dc at home being cared for. So you get a break.

If it s really hard then all options need to be on the table . Plus the dc benefit from 24 7 structure.

I wish people with no clue would stop suggesting residential placements,it's a huge decision for any parent of a disabled child,to make , sometime,s it may well be the answer but it's not something anyone takes lightly ,and its certainly not easy to get.

Residential care is the answer. Friend of mine was in same situation and placing her son in residential was best thing for her and son. Son is doing far better with specialist help.

X2boys what does local offer say? What is there? What have you asked for?
What hours do you get?
(P.s. it was always other parents who informed oh my ds goes to this place or that etc...ask around) What does respite look like to you?

If you wont permit your child to do do overnight then insist on more daytime respite hours.maybe someone to come to your house til bedtime.

But a typical child will do overnights with relatives or friends.
Why shouldnt our disabled kids have that experience thru specialist services?

It can be surprising... they benefit a lot...they cope much better than we think and when you get used to it you learn to relax.

And you have to demand respite to protect your and other family members long term mentsl and physical health . If you can hand over your child to school you can build up to longer and overnights.

And if you do break down or get sick or other emergency then far better they already know the back up plan and have got to know a respite place they can go to... than suddenly with people they do not know.

Get onto ss.
Look at local offer
It takes time to find the respite e g match up with shared lives or residential...and to work up from tea visits to 24 hours.
In meantime get more hours to haVe respite carers in your home who can do one to one with your child?

Reality is you dont want to be in total crisis..you want to plan because you just cannot do 24/7 care on your own . And longer term the child grows into teen and adult. Get them used to being out with carers from young outside school hours
Get yourself used to it.
You can ask for direct payments to manage carers yourself or ask ss to provide via agency.

If you have other children get onto siblings and young carer groups.

It is awful there isn't more respite for you all. ❤
I hope you're feeling a little better today OP.

Good advice @Embracelife whilst I don't want to consider residential school or even over night care yet ,I wouldn't judge anyone who does ,it's very personal and nobody ever makes a decision easily I'm sure I will have to consider it in years to come ,I just wish there was more respite .

My non verbal ASD ds toilet trained age 10 but it was very intensive and i had help from great home care
team
Get your respite carers in place first.

You need help.
Or get him into residential placement. They will hsve the training and faCilities
Any NAS schools near with boarding?

80 miles away is less than two hours away

it is totally feasible for weekly boarding.

Look into it.

You cannot continue and you have to be open to exploring all avenues which will be good for him .

You have to be ready to let your ds attend respite and go and stay overnight for his benefit snd yours. It is hard. The first night they away is hard.
But
He isnt a toddler and will soon grow into a teen .

Depending on genetics is he likely to grow tall and strong?

Hi op I started off just taking him and giving him lots of praise at first he wouldn't even go in the bathroom ,but after taking him consistently for months he started weeing on the toilet ,first thing in the morning ,is the best time IME ,and lots of treats to go ,it's really hard but consistency does work but believe me I know how hard it is ,we are now at the stage where I send him to school with underpants over his pull up and they take his pull up off at school and take him through out the day we have lots of toileting strips with PECS under pants down have a wee under pants up etc ,I'm sure your son can learn it just takes an awful lot of time .

Have you had any help with toileting Op ? Trust me I know how hard it is my ten year old still wears pull ups ,however he was making huge strides. With his self care and toileting before lock down with a lot of help from school and the disabilities team , unfortunately we went a bit backwards with him being off for six months but I'm hopeful now he's back at school we can get him back to where he was and using the toilet independently

This article is on smearing and might help?
autisticate.com/category/contributor/

I am so sorry.
With all the destructive behaviour he is probably trying to meet his sensory needs- have you read this book? It has good ideas for sensory alternatives:
www.stasspublications.co.uk/publications/its-an-autism-thing-ill-help-you-understand

Yes it is and there should be far more respite available ,my son is 10 too and has severe autism and learning disabilities , unfortunately every bit of help you get you have to fight for ime,I have to put locks on all my cupboard,s ,he does sleep though which I'm eternally grateful for.