To really strongly dislike my autistic child

[Candy999]

I am so drained. My DS autistic 6 year old drains every bit of life out of me. No matter what I do for him it is never enough. I can no longer cope with the daily shrieking, screaming, constant outbursts etc. I take him on so many trips out and nice experiences and it’s never enough for him and when we do go it’s just kick off after kick off all the time because everything needs to be his way. When he’s around me all I want to do is lay down and block out the noise and when he’s not here and I have time to do things like household chores etc I just have no motivation to do it as I just want to sit and enjoy the peace.

Currently pregnant with second child and I have no idea how I’m going to cope. My biggest fear is I’m going to go through all of this again with another child. I try so hard to show him love and affection and get nothing back. Yes he’ll ask for cuddles etc but it’s very brief and only because he wants something.

If SS came up to me tomorrow and said someone else would parent him I would happily agree to it. I’m at breaking point.
I contacted my gp a few weeks ago to enquire about some kind of medication for him and we have been referred to the paediatrician but not heard anything back. I just can’t bear it anymore. I love my child more than anything but to be frank theirs times I can’t stand the sight of him.
I want to try and get him into a residential school as feel it would be best all round but I have no idea how to go about this.
I know it’s not his fault but I just feel like why did I have to be the person to be dealt such a crappy life!

Hi OP wish I could give you a big cuddle right now. I’m a SEN teacher I work with non verbal ASD children with GDD. It’s bloody hard, I’m covered in bruises, I’m tired and drained at the end of the day and I get to finish at 3pm I get to have 8 hours unbroken sleep. I’ve had parents say the same thing to me in tears then get all scared about SS. They are just exhausted and at the end of their tether.

Please ask for support, are there any Parent Support Groups around? The parents I know say these are the best way of getting support, meeting people who know exactly what it feels like and just getting out. Talk to the school to no one will judge, they will be able to help. Be kind to yourself do whatever you need to to survive there’s loads of kids I know watch tv or stay on an iPad from when they come in from school until bedtime and eat McDonalds chips every night (not that I’m saying that’s ideal) but do what makes you DS happy, let him be autistic

The "why have another kid" is appalling, but saying that a day out might be hell for him, well that is true. it might be. it is certainly hell for the op and that is good enough reason to stop it. I didn't see a lot of the deleted posts so no idea what they are.

saying the kid asks for days out, well my kid asks for chocolate, but lots of it is not good for them. a bit in moderation. (see my previous post on trying for half an hour out first) or perhaps another analogy is a child with an allergy asking for the allergen. maybe a biscuit with baked milk in is fine but a whole cup of milk is going to lead to disaster. and vomit 6 foot up the walls just because a kid wants something does not mean it is good for them.

no kid owes you cuddles... that is true too. a fair proportion of autistic kids hate cuddles. (too tickly, too close too much contact) others like them and want loads. there are always threads about not making the kid kiss grandma knocking around on mn, and letting the kid have choice. It is no different with an autistic kid, especially if it is actually painful for them. (and yes I do have a kid who hates cuddles)

There seems to be a lot of NT people on the thread judging disabled people for the way they communicate and for sharing their experiences.

I’m autistic and ‘have that protected characteristic’. I’m also bloody horrified at some of the responses to this OP.

OP, you may need your h to stop working so much and give you a hand. You may need his time more than you need his money. Money is not worth making you ill.

You may need to get your head round not getting any meaningful help from services as quite a lot of them can be quite shit. some make it worse. (as you are finding out. ) take what you are offered if it works for you and work on adapting your life around getting your own support, be that from husband or family or cutting out stuff you do not need to do.

Poor kid.

OP don’t be hard in yourself. I think you are experiencing something called blocked care. It’s really common when parenting children that are challenging in some way. Parenting takes a lot out of us - lots of physical and emotional energy. What keeps us going are little hits to our reward centres in our brain. I’m simplifying this, but if you aren’t getting cuddles and positive feedback then you aren’t getting those little hits to your reward centres. This, and other things, lead to feeling blocked in your care. The jug gets empty faster.

The absolute first thing you need is a break and some self care. Your jug is empty and needs refilling. You are not alone in this.

I wish the most helpful forms of therapy were available through statutory services but I doubt they are - but it might be worth checking out if you can access DDP somewhere.
Don’t beat yourself up. This is a human response to a very difficult situation. It does need working on though or both of you will continue to suffer.

Wishing you the very best. You’ve got this far. What is it in you that hasn’t given up yet? How have you kept going? Sending you

YANBU at all. I've felt very similar about my DD at times. That draining "just leave me alone" nothing ever being enough for them feeling is soul destroying. I'm sorry I don't have anything constructive to add but I just wanted to send some solidarity and I hope you get some RL support

It sounds really tough OP. No one should be judging you for expressing these most difficult thoughts and feelings. You can’t help your thoughts and feelings. They are what they are. But anyone with an ounce of compassion will know how hard it is, as a parent, to have them. I think it’s honest and healthy to talk about them. With help and support, hopefully you can figure out a way to improve things for all your family’s benefit.

I think the idea of simplifying your life as far as possible is the first step to take. If you can keep your DS calm for more of the time, then this will help create space for other things. Identify the times your DS is happiest and most calm. It might be watching TV, lining up toys, being in a sensory room, going to the local park (some people with autism do enjoy going out). Make these the key things you do for a while.

Then look at other ways to help your child, depending on his particular needs as you understand them. Creating routines (morning, bedtime), visual timetables to show the routines, simple instructional style language, reducing sensory discomfort wherever possible, are a few that might help, off the top of my head.

Look for support wherever you can. Contact social services and ask for a needs assessment for your child and a carer's assessment for yourself. As a child with a disability your DS is a ‘Child in Need’ (different to Child Protection) and you may be able to get some respite provided. As soon as you have baby number 2, contact Homestart. They are a volunteering organisation that may be able to support you. Apply for DLA if you haven't already. This will provide some financial help to enable you to get a cleaner, pay for one of those meal package deliveries occasionally, or whatever else might alleviate the stresses or meet the extra costs of coping with disability within the family.

Once you’ve started to recover your emotional resilience, you can then start thinking about longer term strategies, such as the best educational placement for your DS. There are lots of organisations that can offer free guidance on all matters SEN related, and slowly but surely is the mantra with this.

Take it a day at a time right now OP. Try and let go of expectations of what should be, or what you thought it might be. The truth is, many, many people have difficult and stressful lives, even if the likes of Facebook and Instagram would have you believe otherwise. You are not alone.

Hi OP.
I know mombie2021 from the autism pages on Facebook, would recognise her writing style a mile away. She's always like this, ignore her. She always knows best
Nobody can understand your life, least of all the protected characteristic brigade who can communicate, who can toilet independently and who managed to pave their way in society having children/relationships:/lives.
It's vastly different to caring for a child with severe behavioural needs and severe learning disabilities for the rest of your life. I can't understand how they dare have such a strong opinion on your life. They'll never, ever understand what it's like.
I hope you're alright.

When at home my son constantly wants to be out and going to these places as he is constantly demanding it. When I take him to these places and give in to what he wants the whole day will be ruined by him constantly kicking off every 5 minutes. We use ear protectors etc. He is sensory seeking not an avoider.

Wanting something and being able to cope with it are two different things

Sometimes I just feel like with school, gp etc does it take me to have a mental breakdown for anyone to wake up and realise that I need help because at the moment none of them are listening

Yes. IME they have a mentality that if they can't see it, it doesn't exist. Meaning the people who can control their behaviour and carry on, get ignored. Nobody likes a drama llama, but is it any wonder people behave this way when it gets them what they need?

I have lots of sympathy. It sounds incredibly hard. I am appalled at the lack of sympathy. The truth of the matter is that some ASD children are not very likeable - screaming, tantrums, sulking and no sign of affection back aren't things that parents thought they were signing up for. The child can't help it but that doesn't help the parent. I hope you get some help and wouldn't blame you at all for your feelings. Parents with neurotypical children just can't comprehend what it can be like in your situation.

You must be exhausted. So much going on already. Its fantastic that youve got him an EHCP and a SEN school placement. Thats no easy feat. I hope as well that makes a difference with his behaviours. If hes been on a reduced timetable, its not stimulating him enough or giving you respite and now an unplanned pregnancy. Im not surprised you need a break. I think that you resting and sitting in peace when hes not there is EXACTLY how you should be using your time right now.

You arent going to love every bit of parenting. Kids are annoying.

Can you get this moved to the SEN parenting board, OP? I’m so sorry at some of these responses. So much “my autistic child / I am like that and therefore this is what your child will need”. For the record my DD will tell you she runs on cuddles - the firmer the better. She’s 12 and I still feel touched out sometimes.

There is a germ of a point in some posts about the outings. Is it possible that for example your DS wants to go to the zoo to see the animals, or the public transport museum to see the trains, and forgets about the people and the crush? That his idea and the reality are different?

You can love the child but hate the behaviour (which im sure the Op does) my child has severe non verbal autism and learning disabilities, it can be a be hard work i remember during one particular school summer holiday, my arms were a mess from all the bites and scratches of frustration from him, and i was i tears at it all, and then he came over and sat on my knee and cuddled me, and moments like that make it all worth while imo.

What dailydisco said. And when I recommended the autism page, I meant theautismpage.com. I am too technologically inept to link it.

Sending you a huge hug.

I have kids with ASD too.

If I were you I would stop all the outings for a bit and focus on getting life at home calm and manageable for you with a tiny baby. Lots of activities that will keep him occupied and happy - for me it was trays of sensory stuff - that sand stuff, play dough, having all his favourite things in easy to grab IKEA trays that can be slotted into shelves.

Get the garden sorted and safe with some things to do and play with so he can get himself outside happily.

But most of all do not blame him. He is a tiny child and cannot help it. His whole world is about to be turned upside down with the arrival of a new sibling and you need to get him calm and happy and your bond with him strong and stable before this happens. Plenty of play at home, TV and hugging on the sofa.

Wow, I've only read the first few messages & you are getting an unreasonably hard time. Sometimes the only place you can be truly honest is on a forum like this & there is nothing wrong in what you're saying. Parenting is hard, parenting a child with ASD can be devastatingly hard.

My DS is also autistic & it is because I love him so deeply that the feelings I have around him are so strong - I am mortified & furious when he is aggressive to other children, whilst feeling simultaneously overwhelmingly protective of him. I also feel grief stricken at how hard he finds the world. It's all compounded by the fact that realistically I know he will never live an independent life, this is it for us. I need time alone in the quiet too. No one outside of this situation can truly understand how hard it is & all I hear from your post is desperation. Please ignore the sanctimonious people who have responded, I'm not sure what they think is to be gained from their judgement, unless it is to push you over the edge.

I've also been told not to bother trying to do nice days out with DS - so what do we do? Resign ourselves to a life lived indoors, in front of the TV?

My DH now takes DS out on a Sunday morning, and I so the same on a Saturday - it gives just enough respite to keep me sane. Can you do this?

Are you part of Portage? I've found them good for emotional support & advice - our DS really benefits from talking about transitions, so he is prepared for each step of the day. It's so hard getting support in place - a real battle at a time you are at your most exhausted.

It might also be worth speaking to your GP, to get some support in place for you - whether that be counselling or medication.

Thinking of you OP, it's bloody hard & those posting otherwise don't parent your child.

@Mombie2021

Trips out and nice experiences? For an autistic child, they would be Hell.

YABU.

For SOME autistic children. With preparation and choice, my autistic son loved them

@Mombie2021

I have an autistic child, I’ve spent 10 years in her shoes, thanks.

And I've spent 32 years in them and still manage to have some empathy. Imagine

I dont think you need to stop nice outings but you might want to change what you do.
Outdoor play areas are less overwhelming than indoor ones, especially if you choose quieter times. Picnics in places he can run about a bit are less stressful than trying to eat in a restaurant. Going to a small farm, probably less stressful than a zoo.
Quieter beaches etc etc

@thinkingaboutLangCleg

You’re not helping, Mombie2021.

She's not interested in helping...

@HailAdrian

Poor kid.

Yes, and poor bloody mum, or does your sympathy simply not stretch very far.

@Mombie2021 You don't know every autistic child and you certainly don't know the OP's child so criticizing her for taking her kid out on outings is outrageous. My kid had a stroke in NICU and has cerebral palsy, anxiety, some autistic traits but he adores social interaction and trips out of the house. He loves amusement parks and malls. He's an exception to the norm.

I have an autistic child, I’ve spent 10 years in her shoes, thanks.

No you haven't @Mombie2021. You've spent 10 years in your shoes, not hers.

Here for sympathy and support for the OP
It's not easy bearing your soul especially when it would be so easy to pile on, it took courage