Page 10 | To really strongly dislike my autistic child

KangarooSally · 25/09/2021 12:40

Talk to social services, maybe you can get some respite. Many years ago I used to work for a company that did that, I would go round to a family's house once a week and just play with their kid for two hours. It was a really fun job.

Getyourownback · 25/09/2021 12:51

This site has become a festering cesspit of abuse, dressed up as ‘direct speaking’. It’s not. It is keyboard warrioring and presumably an attempt on the part of the pathetic perpetrators to make themselves feel better about their own subpar existences and shitty lives.

There’s an element of posters (the same names come up again and again) who absolutely rejoice in being complete vicious cunts to others, often masked with condescending faux concern or the aforementioned ‘plain speaking’, while considering themselves experts in the subject at hand.

MNHQ please do something.

madmumofteens · 25/09/2021 12:54

Sounds like you are at breaking point OP last thing you need is a kicking from others I really hope that you get support in RL soon take good care of yourself 💐 xx

x2boys · 25/09/2021 12:58

@Getyourownback

This site has become a festering cesspit of abuse, dressed up as ‘direct speaking’. It’s not. It is keyboard warrioring and presumably an attempt on the part of the pathetic perpetrators to make themselves feel better about their own subpar existences and shitty lives.

There’s an element of posters (the same names come up again and again) who absolutely rejoice in being complete vicious cunts to others, often masked with condescending faux concern or the aforementioned ‘plain speaking’, while considering themselves experts in the subject at hand.

MNHQ please do something.

Agree, its vile, nobody can be an expert in autism, it affects people so differently, im an expert in my own childs needs but only his.

LordOfTheThings · 25/09/2021 13:00

@Getyourownback I completely agree. It's becoming harder and harder to just ignore it.

PurpleDaisy2114 · 25/09/2021 13:01

I'm also a patent to autistic children. It is really hard.
I would say, don't try so hard. Try not going somewhere for a day and see how it goes. Can you set them up with their special interest at home so you can chill a bit?
I just find, when you're at the point you are, it's trying to bring things down. Low arousal it's called. I don't know your child so have no idea if it works.
Also, my children really pick up on my emotions and mood quickly. My anxiety rubs off. So if you are unhappy, he may sense it. Try and do something YOU want to do today. See how it goes x

N0tfinished · 25/09/2021 13:23

Only sympathy here OP. I'm a little further down the line as my DS is 14. I read a really sweet short book that really helped me cope with his behavior. I tried to link & it wasn't a success, but it's called 'The Reason I Jump: one boy's voice from the silence of autism' by Naoki Higashida - it's on Amazon.

It's written by a non-verbal autistic person when he was around 12 I think. The part that really struck a chord was when he likened his experience to a space man walking around in a malfunctioning robot space suit - like a remote consciousness in a broken down robot. He literally felt like he didn't belong on this planet.

What may seem to us as rigidity, unreasonable behavior, & meltdowns comes from anxiety, fear and sensory overwhelm. He probably requests these trips with the same intention that you agree to them - this will make him happy & everything will be wonderful. Unfortunately he's not able to cope and it all goes wrong.

I'm with a lot of pp's- even if he's requesting these outings, it's up to you to decide whether they're suitable. I don't take my DS anywhere much. Walks in the woods, parks & playgrounds (less so now he's big & scary to small kids) He goes swimming and Horseriding. Lockdown was no huge change for us! We tried the beach this summer & had to leave after 40 minutes because the sand was too much for him to cope with. Next time we'll bring wellies! Definitely no shops or supermarkets, busy town centres or cinemas. Wild horses wouldn't get me on a plane or to (God forbid) some kind of Disneyland bullshit.

I wish you al the best & I hope you get more support xx My lad is at respite since Wednesday and I am completely torn because the peace is amazing but I also miss him. I realized that when he's at home I am constantly vigilant, always looking and listening to figure out where he is and what he's doing.

Foxesjumpers · 25/09/2021 13:33

As the parent of an ASD child I just wanted to send you some support. It can be really, really tough. When I was at breaking point someone suggested hypnotherapy for me which wasn't an instant quick fix but once I felt better in myself I was then better able to provide my DS with with support that he needed. If someone at that point had been able to show me how things would be a few years later I would have been delighted. Not to say it's still not hard, it is, but we can deal with it better.

Please look after yourself as well as your DS, for the sake of your new baby too. I'm not saying hypnotherapy is the answer for you but there will be something that is. Also I have a second DS who doesn't have ASD. He is a fantastic support to his big brother and loves him dearly.

Things will get better. It won't always be like this. Reduce your anxiety and you will automatically reduce his too.

Feel free to PM me anytime.

Saoirse82 · 25/09/2021 15:22

@Mombie2021

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

Autism is a spectrum and all autistic children are different (I'm sure you know this

) so no, you haven't spent 10 years in her shoes

Tal45 · 25/09/2021 15:28

I wonder if an occupational therapist could help you with his sensory seeking side and suggest some things for his room that might keep his sensory side stimulated without having to go out into an environment he can't really cope with.

Ijsbear · 25/09/2021 15:39

@Getyourownback

This site has become a festering cesspit of abuse, dressed up as ‘direct speaking’. It’s not. It is keyboard warrioring and presumably an attempt on the part of the pathetic perpetrators to make themselves feel better about their own subpar existences and shitty lives.

There’s an element of posters (the same names come up again and again) who absolutely rejoice in being complete vicious cunts to others, often masked with condescending faux concern or the aforementioned ‘plain speaking’, while considering themselves experts in the subject at hand.

MNHQ please do something.

Agreed. getyourownback, maybe contact Mumsnet direct?

CheeseCakeSunflowers · 25/09/2021 15:49

I too had times I felt as you do with my DS, now an adult. This charity helped me www.actionforaspergers.org/ I recommend contacting them, they are there for anyone affected by autism, the person themselves, families and partners. Consultations can be done virtually as well as face to face.

MakingM · 25/09/2021 15:56

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk guidelines.

Phineyj · 25/09/2021 16:00

Hi OP, it is really tough. We have an 8 year old with ADHD, ASD/PDA. We were at rock bottom in lockdown and particularly from ages 5-7. She was regularly violent to us and couldn't go to sleep.

Things that helped:

Accepting our lives will be different to others;
Avoiding or discounting advice from well meaning relatives and friends who haven't been there;
Visiting the same places a lot, doing the same activities;
Avoiding activities that come in a course or where you lose money if you can't go -- so English Heritage yes, extra curricular clubs, no;
Finding a school that was genuinely inclusive (that was more luck than anything -- we picked it 4 years before she was diagnosed, and because it had wraparound...which she mostly hated!)
Reading as much as possible - The Explosive Child is good;
Finding other similar parents through a Facebook page for PDA;
Private diagnosis from a paediatrician and SALT;
Play therapy (tried psychologist but was disaster as she masks);
Sport coach type role models - she relates really well to 20 something men one to one -- we hired my friend's grown up son as after school babysitter and my own personal trainer did PE for her...well she trained him mostly ;
Lots and lots of physical exercise;
Melatonin for sleep problems;
Not sweating it on restricted eating;
Encouraging play with younger DC (similar maturity);
Lockable spaces in house to put tech etc or us when she had it in for one of us;
NVR training for us -- this was the most useful thing and she is hardly violent at all now.

I am sorry to say that this has cost thousands and the school is private. State help is woeful in the UK (although to be fair, when we were referred to SS at one point, they were kind, prompt and helpful).
She doesn't have an ECHP because we have chosen essentially to pay for help as needed instead.

Maybe we'll get one though as worrying about secondary now.

I hope there is an idea or two in there for you.

Griselda1 · 25/09/2021 16:24

Grab all the help you can from wherever you can get it. Hopefully medication will help.
I think you're so brave to acknowledge your feelings towards him, regardless of how negatively you feel towards him.

MagratGarlikInDisguise · 25/09/2021 17:01

Hugs, op. It can be hard but your DS is still your DS. When mine is kicking off, I try to remember that his behaviour is communication, and that he is a child and I am an adult. It helps me remember to be compassionate. We do the same things every weekend and it helps. He sets up our routines. It all helps him feel in control of a world that he experiences so differently to other people. Day trips our, when we do them, are planned and we manage him very closely to avoid over stimulation and meltdown etc. Its a different sort of lifestyle but he is the funniest, cleverest guy when it's on his terms. What are your DS' special interests? What dies he enjoy? What sensory release does he need? Kinetic sand and the trampoline go down well here!

Trying2310 · 25/09/2021 17:18

You have had some vile and sanctimonious comments on here but some very empathetic and supportive ones. Focus on these only. Parenting a child with additional needs is tough and stressful. I feel the same as you on many days but that does not mean I do not love my son and I will fight every step of the way to get his needs met. However, this was not the life I envisioned and I have to process that daily. You need support and not judgement. Try to access all support available and call on family and friends so you can practise some self care in order that you are in prime position to meet your sons needs. You are not alone.

evilharpy · 25/09/2021 17:41

I'm not in your situation OP but I have close family and friends who are, I've seen how relentless it is. Just wanted to send some support and I really hope you are able to get some help that makes a difference for you all.

carsonsmummy14 · 25/09/2021 18:02

@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!

My 7 year old is exactly the same. Hes been diagnosed since 2yo and is still under paediatrician so you should be too. Bypass the gp they dont actually give a sh*t because they don't understand. Call your Paed's secretary direct.

Secondly, refer yourself to SS. We did and it was the best thing we ever did. We now have a social worker and get respite for 2 hours every week. Not only do we get some breathing space but we get to spend time with our 13yo who is so often overlooked due to the sheer efforts involved.

Thirdly, I made the decision to have an abortion almost 2 years ago because I knew full well I couldn't cope if I had another child as challenging as my 7yo. My DH also got the snip. We both agreed it wouldn't be fair on us, our eldest, our 7yo or indeed a new addition. As devastating a decision it was, we just had to do it.

I admire you for plowing through with another pregnancy, something we were simply too afraid/weak/scared to do. Give yourself some credit. You're doing so well. From one autistim parent to another, you know that means something!

Finally, access camhs and continence clinic if required (self harm, sensory issues leading to potential harm, any smearing, incontinence etc). Does your DC speak?mine has very limited understanding and is non verbal but the best course we did was More Than Words through SALT. See if you can get onto that and you will find some fantastic tips in realising trigger points etc.

Good luck. You've got this!! I know it's hard really fucking hard, but you don't dislike your DC - you dislike what autism does to him sometimes. And that's OK. Xx

Embracelife · 25/09/2021 18:07

Have you had assessment with ss children with disabilities team?
HVe you looked into residential schools available I e is there an options nearby?
Can you ask ss for shared care /Foster care or emergency placement ?
Does the child s father agree?

My ds started overnight respite care age 20 bug it is possible before. Have you asked SS for this? They don't just come and offer...you have to ask.
For residential school identify potential schools then ask and put things in motion . Ask NAS,for a list?
24 hour curriculum may be very suitable fir your dc.

SaddenedByItAll · 25/09/2021 18:07

I saw a woman at Harry Potter World with an obviously SEN/MH troubled son
She looked broken, truly broken

I think that a lot of people feel the same way as you OP just that you had the strength and courage to say how it is
Nobody thought their life would end up like this and nobody dreamt with the excitement of pregnancy that their life would change forever and being honest, for the worst.

Reach out OP and take everything you can get your hands on, be that financial support, emotional support or whatever

Embracelife · 25/09/2021 18:12

Keep calling the children with disabilities services team.
Get assessment and say what you want. Ask fir full time residential... you may tgen get in home respite to start. Ask for 10o%more than what you think you need dont be shy. Asking for full time residential may be the best for your dc.
Speak to local parent partnership. They can support you in applying and building your case.

A good residential setting may be beneficial to your dc
Visit some if you can .
Don't know where you are but ask NAS
Look at priors Court and others

Embracelife · 25/09/2021 18:15

My ds started overnight respite care age 10

Sorry I meant age ten years he dud 24 hpur residential respite at an NAS school it was great built up to week long .
Now in supported living.
But you do have to ask
They won't come and take him away unless he is at risk from harm
But ask for respite
You can get residential school and or respite through the channels without having to harm him
It isn't easy but it is possible. Those schools are full of pupils.

Nomoreporridge · 25/09/2021 18:37

Well said, @Getyourownback.

Was truly shocked at the responses on this thread last night. Jaw dropping.

NotPersephone · 25/09/2021 18:38

This reply has been withdrawn

Message from MNHQ: This post has been withdrawn