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My ASD child no quality of life & not worth living?

32 replies

bucketofnone · 03/06/2024 20:08

MY DS (nearly 3) has ASD is never calm/happy, constant meltdowns and screaming and hitting himself and us and cannot cope with virtually any aspect of life. This has been the same since he turned 1.
He will only eat 3 foods (coco pops, yogurt, digestives biscuits) and every single meal time is hell. I see how malnourished he is but he will not even look at another food and can barely be in the kitchen.
His quality of life is awful he cannot tolerate people or outside so we dont do anything socially and he isnt at nursery (tried and failed). He barely eats and sleeps or speaks. Everything causes a meltdown and he is only briefly content watching cocomelon by himself before the aggression starts. I cannot engage with him and he doesn't seek me. Everyday is awful. Basic things you and I take for granted like going out for a meal, or laughing with someone, getting fresh air on a walk, he cannot and will not do.

What kind of life is this? Is this a life worth living? He is so unhappy and I am so unhappy. I longed to be a mum but I often think not existing would be better for both of us than this sheer hell. There has been no change and there is no meaningful support from services.

Is there any quality of life for this ND child? I see none.

OP posts:
Oblomov24 · 04/06/2024 16:47

Poor you. I hope you get some respite least. You are too tired to fight but when you can maybe OT will help. What does your GP and HV say?

CadyEastman · 04/06/2024 17:55

I hope you've managed to see the GP about how you feel @bucketofnone. If you're struggling with taking that step, do you have a DFriend or relative who can book the appointment for you and go with you?

MaryMaryVeryContrary · 04/06/2024 19:04

Op I have no experience of this but just want to say what a disgrace it is that there is no real help for people in your situation. Your distress and desperation is evident in your posts and nobody should have to live this way. Are there mums of similarly affected children locally? Would it help to at least be in touch with somebody who truly understands? 💐

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CadyEastman · 04/06/2024 19:57

And do come on over to the SN Children Section. You should find some support in there Flowers

MrsSkylerWhite · 04/06/2024 19:59

Oh darling. Do you have any family support?

ImaniMumsnet · 04/06/2024 20:41

Hi OP,

We just wanted to check whether you would like us to move your thread to the SEN children board?

Wishing you all the best

Cadno31 · 04/06/2024 21:12

I've been where you are too. I can only speak from my own experience and say that it does get better. Your little boy won't be like this forever. My boy is 13 now and the difference from when he was 3 is massive. He has Autism and learning disabilities. I know it doesn't feel like it now but things will improve. It's a very hard and lonely road but you'll notice little changes as each year passes. I look back at those early years now and breathe a sigh of relief that things are better and I'm sure you will too. Wait for school - take all the help you're offered. It will come xxx

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