Struggling with autism

[garythesnail]

Please be gentle as I already feel like the worst parent ever but I've no one I can talk to about this irl.

Basically I keep reading people saying how special their autistic child is and how they "wouldn't change them for the world". I need to know, is this how people actually feel or just something they say? Because I'm really struggling and if I'm honest, I would change the way my DC is, it's way too hard, I'm so out of my depth and deep down, I want a "normal" kid.

I'm aware I probably shouldn't feel like this and will get my arse handed to me on here but I have to get out how I really feel. I want to scream, no, it's not great, it's not special, it's fucking awful!

You can feel like that, and nobody can stop you. But do you want to feel like that forever? Because your child isn't going to stop being autistic. They can't and won't change. So you can look for the positives in your life and focus on those, or you can allow yourself to become mired in misery and regret forever.

You will have hard days, everybody does. Yours will be even harder than most. But you will have good days too. Hang onto those like the gifts they are.

It's nobody's fault that your life has turned out the way it has, there is literally nobody to blame. So don't waste your negative energy resenting a thing you can't change. Focus that energy on learning everything you can about neurodiversity, and ways to help your child.

Of course I don't want to feel like this, why would I? I hate it.
Thanks for confirming that it is me then. I can't do this.

@garythesnail

Of course I don't want to feel like this, why would I? I hate it. Thanks for confirming that it is me then. I can't do this.

I absolutely 100% believe you can.

What's the thing that you struggle with most? Can that thing be improved?

Of course it’s not just you. I’m fairly sure that there are thousands of parents across the world who feel exactly what you feel. And of course you hate it.
How old is your child? As that may make a difference to the very good advice some people on here can give.

It can be very difficult at times and it's OK to feel like you do. Parenting can be hard work at the best of times and it's even harder when you are struggling to cope with your child struggling to cope.

Being told you will get through it isn't always helpful. It makes me want to poke people who say it in the eyes to be honest. When you love someone, you want things to be easier for them and it's devastating to watch them struggle and become overwhelmed. It's also bloody hard to deal with no sleep and violent outbursts and controlling behaviours no matter how much you know it's not the person's fault.

Which particular bits are hardest just now? Can you (and they) get any more support that might help? Do you have real life people to sound off to and time to recharge? There are always moments of sunshine - I hope you can get the help and you need to be able to enjoy them.

Hi OP yes it's hard. I suggest keeping away from social media bullshit as much as you can!

I went through a stage of really wishing my children were "normal" and feeling quite resentful, but I don't feel like that now.

Would I change my kids - I would definitely like to stop them arguing, kicking me etc. I don't want life to be hard for them. But I love their personalities.

Thank you for your compassion @HotPenguin, not feeling quite so alone really helps.

OP this is soooo normal ! I absolutely hated this part of my kids too !

I did believe this part killed/transformed who my kids really were, in my head they were lovely gentle souls and ASD totally overtook their personalities

I did end up doing some interventions that brought both my kids back
I know MNetters don't believe in these stuff so I'm not going into detail but for us it was a game changer

Good luck OP, special kiddies' mums know exactly what you're going through
Sending love!

@garythesnail

Raising a child with autism is hard, but it can get easier if the child in question has the right support in place and learns strategies to cope with their difficulties.

How old is your child and what is it they are specifically struggling with? Do you think they are getting the right support at school ? Are they getting everything they are entitled to? Are you getting any support?

If you can give a bit more information we may be able to help.

Our child with autism was unbelievably hard work, and getting the right support for him was incredibly stressful, but because we fought for that he has grown and developed into a wonderful calm and caring young man who has exceeded all our expectations. I definitely wouldn't change him now.

I feel exactly the same op. I would change my ds. I don't want him to struggle. I think people say that as it makes it easier to accept. Noone wants their child to face difficulties and it's a grief for the parenting experience you thought you'd have. 90% of me is now accepting, the other 10% is resentful and I think that's normal. I hope as my child ages I'll be 100% like he deserves but it IS hard

I feel exactly the same OP. Support very much depends also on the professionals delivering it and we have not had great luck with that either.

Right there with you OP. I adore my girl (3yo) but goodness I wish things were easier on us all sometimes. Seeing the conversations my friends have with their kids of the same age, it blows my mind and also breaks my heart I don’t (and won’t?) have that with my daughter, or the relationship I had dreamed of having with her. And when my friends’ kids cuddle up to their Mum spontaneously and tell them they love them, god I long for that. Maybe one day ❤️

However I think the only thing is I know I can do this. The days can be hard but I know I can. Please reach out for support if you’re struggling, don’t feel alone. Sending love x

Hi @garythesnail just popping to say it's important to let yourself grieve for the hopes and ideas you had. But it's also important to realise that your kid has different needs to you, and when you can help them get what they need you can make their life so much better.

My life got so much easier when I stopped trying to get my son to go to parties, football etc. Now he socialises in small groups only. He has hobbies but they are things we've found that suit him.

If my kids hadn't had autism I would have been one of those annoying parents who goes on about how brilliantly their kid did in SATS etc. It really has changed me and changed my values in positive ways.

One moment of realisation I had was when my son refused to get dressed up for a special day at school. Usually I tried to persuade him but this time I thought sod it and he went in school uniform. When I collected him I saw that he was the only kid in the whole school not dressed up. I asked him how he felt about it and he said "happy mummy". At that point I welled up as I realised he wasn't fussed about being like everyone else, it was just me trying to make him fit in.

I'm really glad you posted this OP because I absolutely hate my life with my son who is 4.5 and has been referred for ASD diagnosis.

I wish I hadn't had him. Every day is a massive struggle and I don't want to be doing it tbh. I can't see any good bits in any of it. I envy my friends with 'normal' children who are bright and interesting and chatty and actually want to go out and do things.

If anyone knows how or when I might feel better, please do post because I feel like I'm staring down a black hole at the moment.

I go to therapy every week and I'm taking antidepressants. It truly is grim, I used to be a happy person.

Drunkenflamingo have you had social care assessments? A carer’s assessment for you and an assessment via the disabled children’s team for DS?

Scope offer mentoring for parents of DC who are going through assessment or are newly diagnosed.

Does DS have an EHCP? Has he had SALT and OT assessments and does he have ongoing support?

Have you claimed DLA?

@drunkenflamingo2

I'm really glad you posted this OP because I absolutely hate my life with my son who is 4.5 and has been referred for ASD diagnosis.

I wish I hadn't had him. Every day is a massive struggle and I don't want to be doing it tbh. I can't see any good bits in any of it. I envy my friends with 'normal' children who are bright and interesting and chatty and actually want to go out and do things.

If anyone knows how or when I might feel better, please do post because I feel like I'm staring down a black hole at the moment.

I go to therapy every week and I'm taking antidepressants. It truly is grim, I used to be a happy person.

My DC is the same age, will be 5 in June, and is currently on the waiting list for an ASD assessment and non verbal.

I spent such a long time feeling like you do. I used to see other children my DC age talking to their parents, walking nicely without dropping to the floor screaming and I'd be so full of envy, wishing my DC was like their child. I used to cry to sleep wondering why. It is so so hard and people don't realise how lonely and hard it is. Because it is, it really is. You grieve for the life you thought you'd have as a parent and I believe personally like all grief, it is a process that is different for everyone but you need to go through it. Feel all the feelings but know you will come through the other end. You can do this.

My DC started school in September, and this made such a difference. They are now saying the odd word in context. Speech therapy also helps, DC uses PECS to help communicate and this is what triggered using words and also helped to reduce the meltdowns.

As others have said, have you looked into claiming DLA? As this is such a huge help as well, my DC now goes special needs swimming because we can now afford to go. Don't get me wrong, we still have our bad days, but we do now also have lots of brilliant days - and so will you.

Hi OP, sorry you are feeling so low. I think it's perfectly valid to feel like you do. SEND parenting can be tough.

What are the biggest challenges you are facing with your DC? Eating? Speech? Meltdowns? Maybe give us some detail and we might be able to make some suggestions for strategies that could help. There's a lot of wisdom on these boards.

I hate that autism is seen as a superpower! It's so not, it's hard, sad and heartbreaking. I'd give anything in the world to take away my dd9 autism so she could have a happy life.

And you can do this.
Thats your child and you have specifically been chosen for this. There is a reason this is happenig to you. And it is because you are the best person for it!!

Why do people spout such utter nonsense?

Why are you resurrecting multiple threads spamming them with a link to your blog?

You can advise and “help” others without resurrecting numerous zombie threads and spamming the boards with links to your blog, plenty of posters here manage that. You don’t “create a community” by spamming another forum with a link to your blog, it is against MN’s talk guidelines.

Also if anyone wants a therapy technique for any specific issues they are having i am open to asking my sons therapists for specific stuff for their children.

How on earth can you do that? You don’t know their DC or their needs. No responsible HCP should give advice based on second hand information like that, it is inappropriate. Who is going to pay for the therapists’ time? Or if it is a service you are advertising, you shouldn’t be doing that on MN.

The special DC for special parents rhetoric is condescending nonsense. If I wanted to be disrespectful I could say a lot worse.