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

[bucketofnone]

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.

Oh gosh, that was a hard read. Poor you and poor him, this sounds miserable. Hopefully someone will be along with advice or insight, but I just wanted to give you a virtual hug. X

Do you have a portage service locally? They may be able to help.

Gosh OP that is desperately tough to read. Are you not supported by any services?

Ask for a social worker and if refused complain to council. You need a social care assessment and some form of respite. Are there local advice agencies who know what might be available.

OP I am so sorry to read this.
couldnt read and run, though I may not have a great deal that is helpful to offer in this situation I wanted to reach out for a virtual hand hold.
My son is ND, and I come from a family with quite a lot of ND of a variety of shades, so I have a little insight if not the full experience you describe.

My first question for you is do you have any support in the form of (a) Portage and (b) outreach from the early-years outreach team associated to an ASD school in your area?
you should be eligible for both of these things - you can try referring yourself through the local children’s centre.

secondly, do you have access/can you get access to Occupational Therapy (OT)? This made a MASSIVE difference to us.

you ask is there any quality of life - the answer of course is YES, and while it may not seem like it right now it is there.

i can only share my experience, but we had many intersecting issues going on- with sleep deprivation being a massive one that was foundational - before he was well rested things seemed to be going backwards - after getting solid sleep (and us too) everything gradually got easier . We were supported by a sleep training programme (Batelle) that had an ASD Specialist on staff who supported us to customise the approach and provided 1on1 support for difficult behaviours that ramped up during the programme. we accessed this privately, but I should imagine with some inventive googling that you might be able to find a plan and perhaps through portage meet some other parents who can act as a support network for this step

then on top of this, OT in particular helped us understand some other priorities and create some strategies to support is to manage these and increase his “tolerance” for a wider range of activities.

DS’s sensory overload (sounds like this may be an issue for your DS from what you describe) was particularly around sound - headphones helped him a great deal.

you describe a very limited list of “safe foods”. If you haven’t done already look up support for children with ARFID.

it may be that you chip away at the various elements slowly but surely to turn down the “extremes” of your DS experience of the world, which in turn should help him turn down the “extremes” of his behaviour.

When I was a child my brother was supported in a very similar way by the local Barnados centre. I am not sure if they still provide these early childhood intervention services - worth looking into though.

all of this is so hard, OP. Parenting an ASD child can be really isolating, but you’re not alone.
it does get better.
DM if you need xxx

Oh @bucketofnone that was so hard to read, you can really feel your pain.
Whereabouts are you? As well as your local council you need to tap in to your local carer support organisation as they should be supporting parent carers and be able to join the dots re services available. I used to work in that field so depending on where you are might be able to make some suggestions.
💐

This sounds so, so tough OP. I really feel for you.

I really feel for you.

My son was diagnosed with asd just as he turned 3 so it isn't mild.

He never had a meltdown but he was hard work. He bit, hit, run off, non verbal, tried to climb the walls to get away from adult interaction, strangled his little sister, hurt her badly, made my eldest break down. Constantly distressed and causing distress.

He is 12. He started to talk at 7. He started to read at 11. He is not that person any more.

He has severe needs still but he is funny, gental, loving, intelligent, caring, empathic, caring, adored.

Things change.

Fight for children with disabilities socail care, portage, feet funding and sure start. Do the NAS signet course too.

Don't belive that your child will never do x. It really is bloody hard

Op, it sounds really hard for you but alongside getting support for him, look out for training and help for you around ASD.

my child is Autistic, beige foods are usual, it’s a safety issue. When anxious he needs them. It doesn’t matter if he has them daily, it works for him.

we don’t eat out as most places don’t have his safe foods, but we do sometimes (it’s just we can’t be spontaneous)

the more you learn to support his needs (I’m sure you are doing all you can, but they will change and develop as he gets older), the easier his life will be.

we don’t all like the same thing but many autistic people do like the rhythm and routine of familiarity (the same program, film, book, vehicle…) it helps them manage and navigate a NT world.

I like a new film but my child like one he knows, it’s ok, it’s just how it is!

he will find his pleasures…

We have two boys with ASD (youngest is still non verbal at 8) and 3 was definitely the toughest age with both of them- the transition from napping to not napping was a nightmare, sleep was terrible. I hope you are getting some support- our health visitor was quite good pre school and it is definitely worth applying for an EHCP assessment as soon as possible for a special school if you want that.

Just wanted to say I'm so sorry for what you're going through. I hope the advice here helps. I'm so sorry I don't have more to add. Look after yourself.

Just want you to know you're not alone...you could have described my child here. We're on several waiting lists but nothing has happened yet.

Different profile but my autistic child almost broke me age 3. As you are experiencing we just couldn't do anything other than stay home and manage meltdowns. Life is still far from easy but I would say after he turned 7 I started finding moments of joy in being his mother.

Phone social services ask for a carer assessment and a disability social worker. They will say no. You then complain repeatedly and loudly.

Get all the paperwork you have together and apply for an EHCP. You assume they will find a suitable school but they won't they will stick him in mainstream I swear starting school almost broke me too. With the proper educational provision you get the school hours back and you feel more human. You never get to enjoy the things you thought you would as our children can't enjoy lots of stuff but when you get a break from them you start to find enjoyment in the things they do. But at 3 you still have a long way to go- do t give up I promise it will get better. Find other SEN parents they will keep you sane xx

He is only three it can be very hard
But things can improve with input
Call ss children with disabilities team ask for urgent respite support
Tell your gp what you thinking

He doesn't deserve to die . No. That s not your decision.
Speak to his father? Specialist foster care?

The thing is I have no fight in me to try and get services that will probably not even help. The thing that drives parents is love. I look at my child and think how can this screaming hitting person be wanting to live and how can I love it.

I hate that this is going to be my life forever, parenting a SN child is not worth living. There is no happiness or positivity.

Sounds like an absolute shit show OP. No advice, only sympathy. You deserve better.

So sorry you're going through this. You're not alone, some are going through the same, others are further along.

I myself felt as you do now when my son was 2. Truth be told, he was extremely hard until 8 years old. He's now an adult and attends different groups/hubs while I work. I work in a day service for adults with severe autism, most of them have little to no verbal communication, but they're able to let me know what they want though other forms of communication. Each one has their own abilities and definitely offer something to the world.

The best people to speak to are other parents, until you can get help from services. Do you know of any local groups? Are you on FB? Search local area SN or autism groups and request to join. Are there any SEN nurseries around? Nurseries should not be refusing your child, if they do, then they're likely not able to meet his needs and best not to send him somewhere where he will be misunderstood.

Where do you live? Maybe I can help?

If you are having constant serious thoughts about how your child (and yourself) might be better off dead, please reach out and speak to a GP urgently for support, medication and/or counselling for you. Social services and the Samaritans might also be able to signpost and support you if you are in crisis.
Going any further along this path will definitely not improve anything for either you, him, or the people around you who love you both.

I found age 2-4 awful with my autistic child. He had very little speech and lots of meltdowns- he’d scream (literally scream) for about an hour at the same time each day. He is 8 now and whilst not like NT children some things are easier- he speaks in nice sentences, can generally do and manage a bit more, meltdowns reduced once his communication improved and we have also learnt a lot about what and how he is triggered.

He’s also a pretty fussy eater and I’m not sure that will change. I give him a gummy multivitamin, gummy iron tablet and gummy high strength vitamin D (there’s also some evidence that boosting vitamin D can help improve behaviour in autistic children so worth a try) and that makes me feel a bit better about his lack of good diet.

Have a follow of Eileen Lamb on social media. She parents a profoundly autistic child, is autistic herself and has another autistic son. She posts some really good content for parents which might help you feel less alone.

Op my heart breaks for you. You sound defeated, depressed even and I don’t blame you, not one bit.

my 2 dc both have autism too but theyre
much older at 13 and 21 and are definitely much less severe than your little man and I struggle too so god only knows how you feel. I hear you.

is his dad around? Do you have any family support?
you need to get that fire in your belly and fight fit what your son needs and is entitled to. you need to be his advocate here and remember that any support he receives will have a positive impact on your life too. 3 year olds are notoriously hard work anyway, add autism into the mix and life becomes
almost unbearable as you’re experiencing.

pls take some comfort that people care and I’m another one who’s here if you need to chat ever. I have insomnia and health issues and am up at silly hours most nights.

sending you the biggest hug 🤗

OP I’m so so sorry to hear this.
Please know that it won’t always be like this.
ASD children can develop hugely much later down the line than neurotypical children. This will not be your life forever. Autistic children do progress, it’s a different path.
I understand what you mean about not having any fight left in you for support. It does sound like an OT would be helpful for you. Could you afford to get one privately? If it’s even just an assessment and recommendations to start with, that could be really helpful.
My local area has an autism charity and they run virtual support groups every week, is there anything like that where you live? And our local family centre runs SENd drop ins for advice which have been usual for us previously. Please do look into what support could be out there if you look for it.
I know it’s a very lonely place in the early years but please know there’s many Mums who have been through similar.
Has DS been referred to a dietician?

The one thing that improved my sons life was me. I started by getting him into a private speech and language school and he was talking three months later.

There's two versions of me. The real me, and his mum..I'm a introvert. His mum is a fighter.

I put on an armour and a personality and I get things done. I complain a lot. Its one email to start with.

No child in my sons original class had speech therapy except him in his ehc. Then when the LA said he might not always get therapy I moved him. I don't know if he would talking without that, but it certainly didn't harm him.

May I please ask what sort of speech language school you took him to? I too am desperate to hear some words from dd2

An independent speech and language school. It was named in the ehcp. I will pm you