Help

[HardyBird]

I'm so tired,I am awake for up to 5 days before I get a few hours sleep and am lucky if I get about 7-8 hours every 8- 10 days.My son is 9 with ASD,I'm after any advice anyone can give me as we have had all the help from all the different teams and they all come to the same conclusion,that they don't know what to do.
I get it as I don't but hopefully someone here will.A little info,he has a very bad sleep disorder despite his melatonin he is given,he runs around screaming all night so only sleeps about 1+3 hours a night but not every night he sometimes goes from 1 and a half to 2 half days no sleep.He is smashing up my house as we recently just moved,he hits me a lot and can really hurt me and he has started swearing now all the time it's all he says,I try to put in consequences for all these actions but am failing miserably.I can't get through to him and as the days go I'm struggling as what to do as it's getting me so down as his first reaction is to have a big melt down.Anyone got any advice, please be kind.

im so sorry to read this OP! I have no advice, I just didn't want to read and run. Hopefully this will bump the post and someone will be along with some advice to help soon. Xxx

What’s his food and exercise like?

Hi @HardyBirdI hope you don’t mind, I’ve asked MNHQ if they can move this over to the SN Children Section where you should get MNers with experience of ASD commenting.

I have one with ASD but have never experienced what you are experiencing. I hope someone comes along soon who can offer some help

Is he epileptic too?

Consequences aren’t going to work if he is in meltdown. Meltdowns aren’t a choice.

Do you have a disability children’s social worker? If not ask for one.

Does he do much ‘heavy work’? What helps him regulate?

He only eats about 7 foods of which none is fruit or veg,won't eat anything cooked except the occasional birds eye southern fried chicken or KFC but exercise is good he never stops he goes all night long

Has DS tried other medications instead of or as well as melatonin?

Has DS had a home OT assessment?

Have you had social care assessments?

What support is DS receiving? Does he have an EHCP? If so, what provision, including therapies, is included in it?

For the eating, have you looked at ARFID?

Sleep and food wise he sounds very like my ds. Melatonin was not a good fit for us. It got him to sleep but gave him horrendous nightmares and vivid dreams so we don’t use it at all anymore. When you say he is on the go all the time is he actually sweating or just franticing (I know that’s not a word but ykwim)? If it’s just busy busy then I’d really think about harder more focused exercise. Rebound Therapy is good for us as is cycling in a local forest, swimming lessons, and zip wires.
As far as food goes, is he constipated? If so then that can make things difficult. Add roughage or a laxative (ask GP before you choose one), we use califig which is gross but ds swallows aster much practice.
Sleep is much better here when everything is ok with exercise diet and education but rubbish otherwise. Eg drum teacher had to cancel this week and we’ve been sleepless

He is on medication for overflow which they say is constipation but does go up to 5-8 times a day it's loose a lot of the time.
Getting him out of the house is challenging at the best of times due to him being tired and am only 5ft myself very slim and have to carry him around just so I can get things done.The pediatrician says him running around all night throwing himself is him sensory seeking and gets delight out of doing it which is why he does it.She also has looked at ADHD but does not want to put him on that medication due to the main side affects being lack of appetite,which as he is on bottom centile and is weight goes up and down like a yo-yo due to his eating habits.
Luckily no epilepsy but was born 3 months early so had loads of health problems which thank god is behind him unless he has a bad winter or a cold that goes to his chest.

Has DS had a sensory OT assessment? And a home OT assessment?

Have you tried a wheelchair or SN buggy? Some find this helps with getting out of the house. Some find sunglasses and a bug hoody helps too.