To wish I’d never had children

Ok so I don't regret my kids honestly I don't but I get why your burnt out and I also get why your joy is sucked the f... out of you. I have 5 with ASD PDA and also one with DS I do have other children that like to capitalise on my stress too. Honestly you have to carve little treats in there otherwise you go insane. It is nothing you did wrong. ASD is this magical amazing shitshow that never stops. You become hypervigilant and your always tired it sucks. I have started therapy recently and honestly has helped. My husband can't see that our DS baby is different and needs extra help.lol So that has been fun. I do daily therapy with her at home and and I have a lot of medical appointments. Again I try and tye in a treat like a hot chocy while they do therapy or a puzzle. But in saying all that my brain is tired and near dead. AGAIN it isn't your fault and stop the self blame as that is exhausting you more. Said from a mum that completely been blaming myself for years.

OP, for the future, here's a BBC article about a new model of group living for young adults who have disabilities:

www.bbc.com/news/articles/clyleyknxr3o

Ive just come from a thread called anyone regret becoming a parent, not many comments on there.
But i feel for the ones that are having a hard time.

You sound like you are in burnout. I would love to try and reassure you that things get better, but mine are teens now and although we might have a good week or two, it never lasts long before we are back in the trenches.
Like you, I've also lost myself, but on the positive side, at least your husband is still there - mine couldn't handle everything and left. He has the kids one day a week for a few hours, at my house as the kids won't go to his house and I have to put up with the meltdowns all week leading up to it. I also have to use that time to work.
I have a few good friends left, but barely get to see them as the kids don't tolerate being around people.
Like you, I love my kids with all my heart and absolutely everything I do is centred around them, but it is hard work. I do find there are lots of moments to be proud of them though, they just look a lot different to normal parenting pride!
Keep on hanging in there and putting a brave face on and who knows, maybe one day it will get better!

The issue is the fact you didn’t want children in the first place and felt forced into it by your DH

Hard disagree I’m afraid. I think the main issue is the fact OP has 2 neurodivergent children, not that she was apathetic about parenting in the first place. I would hazard a guess if OP had 2 easy going, neurotypical children she would not have posted this thread. She may have not adored being a mum or be completely fulfilled by it, but equally lots of people who are desperate to be mothers are disappointed by the reality of parenting as well. But the majority of OPs desperation comes from the nature of her children, I think. It’s hard for people to swallow that, but it’s important.

You sound brilliant, wonderfully supportive, and extremely kind, OP. Your children are absolutely fortunate to have such a great mum, as much as you feel that you are pouring from an empty cup and are getting nothing back.

I agree with others that it is truly a roll of the dice havingchildren, and nothing in life is guaranteed.

My parents adopted me and my late brother, he passed away from cancer aged 34 and was as different and difficult as you could get. They obviously had no control over the children they adopted, as in their personalities, temperament etc, and obviously we don't share genetics so they couldn't ever know he would be dreadful as a teenager, a drug addict, angry and self destructive.

My point is that they gave everything to raise a child, but it was a thankless task in many ways. And even though he didn't show gratitude, they did know he had a good life, and never stopped loving him or worrying. I know the comparison with you and your children isn't quite the same (and i don't know if my DB had any specific symptoms of autism but he possibly had a lot of inherited mental health issues), but as hard as it all is, it's important to get some ways of feeling like you are doing a brilliant job, and life has given you something to be proud of.

My parents probably felt like their efforts were wasted in some ways, but they can look back with a sense of pride at his life being the best it could ever have been, thanks to them.

You can hopefully say the same, in that your children are getting a lot out of life, in spite of how much it has taken out of you. I think you should be able to feel deeply proud of how you cope, and it's evident you are absolutely doing everything you can to the best of your ability. ❤️

Keep going 💪 ✨️

Just sending respect and compassion your way. Honestly I think you are both doing an amazing job. You seem like a really lovely human doing your best in a difficult situation for the people you love.

OP I am so sorry for you and all the others going through the same. You’ve been dealt a really shit hand.

I do feel that your husband (as good as you think he is) needs to be way more involved in the tougher aspects of having two autistic children. You said you shoulder the burden for all the forms, appointments, school, trying to get help etc. that’s not right! He should bear some of that too. Perhaps then he would realise how draining this is for you.

it’s all very well doing the nice bits, making costumes etc but he shouldn’t get to bypass all of the hard stuff

The other way to look at it is that she thought you were so wonderful, and loved being your mother so much, that she wanted the joy many times over. Not that one wasn't enough.

I think this is a very sensible thing to do actually in your scenario. Obviously every situation is different but I do think you made the best choice for your child. Realistically in 10-20 years when you & DH reach 60s and 70s it would be very difficult to continue on as you all were, and ultimately it would have been harder for your DC to move to assisted living in his 30s!

Hi @thegreenlight , I think you've been very brave to post your experience, even though you think you'll be massively criticised.

No criticism from me - this was exactly what I hoped OP's DC would be able to access. It's really the only way for them to be able to move out.
I have so much admiration for what parents like you and the OP and her DH manage to live through every day.

💐💐💐

This sounds like an all encompassing situation OP in which you are trying your hardest yet feel there is little reward or satisfaction to be gained.

Children come in many shapes and sizes. As a former teacher you will be well aware of the type you deem to be the example of the perfect child. Unfortunately there are children like yours who would try the patients of a saint yet as you say you love them & would do anything in your power to help them through their childhood. I'm interested to find out if they have any specific abilities which make you proud, especially given their challenges in life. One of my children was what I regard now as undiagnosed ADHD. We were told he would never make university & it would be difficult given his 'type' to pass formal exams. We knew he was difficult although also extremely bright & talented. Eventually & with lot of support he not only went on to university he gained 2 degrees & a masters & is now in a professional career. It is hard bringing up children who by all accounts are not run of the mill. This includes children who are described as polymaths including excelling in sport & music. They have different challenges. Obviously their parents are proud of them but behind closed doors they are physically & mentally exhausted & can't keep up with their demands. You have very special children with special needs. It's hard but you love them & wouldn't be without them despite having days where you feel you wish they hadn't been born. Your doing a great job but also need time to yourself.

Again I would love to find out if there is anything at all you feel proud of regarding what they can do while not understandably focusing on what they can't do. 😊

This is seriously gut wrenching to read. The issue is the fact you didn’t want children in the first place and felt forced into it by your DH. I think SEN aside, if you really wanted to have kids it would still be hard but you wouldn’t feel even half as bad as you do now. I really feel bad for you. I have 5 DC and the youngest has SEN, he’s thankfully not as difficult in terms of behaviour as some can be but has speech delay and other issues like no sense of danger.

I actually think I’ve developed PTSD or OCD or something because I can’t deal with unlocked doors or wide open windows, just because in the past he’s escaped and run down the road and he’s terrifying so I have to check they’re all locked every time I walk past. I have visions of him jumping out of the window upstairs sometimes, like intrusive thoughts.

It’s really difficult BUT I love being a mum, you don’t and I think that’s what makes your story harder to take. I’m so sorry, you need some professional help though, I really recommend therapy.

No you don’t you deserve a big hug for trying so hard.
I wish I could help you even a little bit I can feel your pain through the screen.
So sorry op.

Euch sounds vile,my mum always said she wished she had a house full , meaning she was disappointed in me her only child, well fuck her,she wanted a housekeeper come carer as her life progressed,naah bollox to that

No judgement from me. I don't think you have failed at all.

Hey OP I hear you with the constantly hoping the next thing will make a difference and then being disappointed every time!!

I have 3 autistic kids, all diagnosed within the last 4 years despite them being secondary school age because of waiting lists, and 2 of them are currently going through the EHCP process, which is it’s own nightmare, and I always hope the next thing will be the thing to take a bit of pressure off my shoulders and somehow it just never really is!

it’s exhausting and depressing and something that people who aren’t in this world can never even hope to understand so I totally understand the way you are feeling with it all right now!

I’m not sure I have any useful advice really, because keeping going is really all that you can do, but I want you to know that you’re not alone in your feelings about the SEN management side of life. it’s hard to enjoy parenting when you have so many other roles to fulfil too and so much fighting systems to do.

Why would you be? It sounds like an ideal arrangement for all of you. Not every parent is able to care for their disabled adult dc and sometimes it's in the best interests of the disabled person to live elsewhere. As you say, you have a relationship with him that works.

My profoundly autistic son is in a care home and he is much happier than he was with me. His needs are being met and I finally have peace and space to take care of my physical and mental health.

Anyone who judges simply hasn't a clue what life was like and what led to such a decision. It's never an easy one.

Oh @thegreenlight I really feel for you.
You are a fantastic mother... but likely extremely burnt out. I wont pretend to k own.your struggles as I don't have ND kids. But my best friend has 4 kids, 2 of whom are autistic. The eldest will be self sufficient, the youngest likely won't be. I see my friend struggle every single day... every day.

She loves her kids with everything but over the years I've seen my friend fade away, because every day is a struggle from the minute she gets up to bedtime and then there are multiple night awakenings and the affects on other kids to deal with etc.

She is also not working anymore as it wasn't feasible. Her husband while a good dad in general.has absolutely zero understanding of the struggles... he doesn't understand the therapies needed (or the fight to get them), teh medications, he can't pre-empt the kids reactions when routine is out of whack, he has absolutely no idea how draining it is when the kids are disregulated etc. Because she is the one who has pretty much dealt with it all their lives. I think the Dads can sometimes say silly things meaning well.

I don't know how she keeps going. I absolutely salute you all. Myself and our good friends make sure that we meet her regularly without the kids (so we go for dinner or the cinema etc)... it probably only alleviates her for a few hours but I also have her husband warned that he needs to deal with the house and kids and that she isn't coming home till after bedtime! Secondly we meet her with our kids in a place where the kids are SAFE and where her kids can play freely. An enclosed garden or park, a softplay at specific times or wherever she needs. A few hours where her kids can burn some energy, and she can sit and have an adult chat and a cup of tea.

I think you need to try to find yourself again. Whether it's a book club, a gym class, a coffee with a friend.... somewhere you can breath! Also try to find pride and joy in the little things specific to your kids. They might not get sports medals or awards but lots of kids don't. Maybe things like finishing a lego set, or making a costume etc. No two accolades are the same.

Aww, OP 😞 i wish I could give you a cuddle ♥️ or was able to do something that could give you a break but it feels so much deeper than that. I have no advice but it's heartbreaking seeing what you're going through.

Your eldest sounds like my son - he's 5, academically bright, but only talks about his own interests and struggles with friendships. He's got diagnosed autism and adhd and will start specialist school in September. His time in mainstream school has been an absolute car crash.

I love him dearly though and I am so delighted to see him every morning, although he's very difficult.

Do you think you need therapy to help you with your feelings around your children?

Your children need you so much. Don't give up, you're a wonderful mum.

Name change as I'm going to sound awful here.

There can be an alternative @thegreenlight. Not for everyone, but for some.

We have four DCs, all of which are ND to some degree but two severely.

My eldest DS is now 18. He has autism and ADHD and has been violent and unmanageable all his life. Like OP describes, he has never has a friend and has not been invited to a single birthday party in all those years. He is capable of mainstream school but was constantly in trouble. He was excluded from schools three times (or would have been, but each time the HM called us in for the "we're not sure this is the right school" conversation so we jumped before we were pushed). At home he was aggressive towards DH and me and frequently physically assaulted his three younger siblings. DH intervened when it got physical (only to prevent him getting to them) but as DS approached adulthood it became clear that DH (in his 50s) may not always have been able to protect them. For the last two or three years we didn't cope in any meaningful way and in the end we allowed him to spend all his time he wasn't at school in his room because he was sort of happy and that was easier. Nobody cared. Since he was five we had door after door slammed shut, no support whatsoever.

When he was 17 and a half his college suggested we try adult services at our local council and they have been amazing. They couldn't do anything formal until he turned 18 but they could help us prepare and days after his 18th birthday DS moved into supported housing about 45 minutes away from us, initially for short week placement in a special unit to help young people transition and then into a "permanent" home with four other young men and full time support. This is all funded via UC and housing support.

We speak to him every day and typically see him about twice a week for a couple of hours, either to take him out for lunch or because he has an appointment or, to be honest, because he is in trouble. He shouts and swears at us as he always did, but somehow it's manageable as we return to a calmer house and he goes to his. The carers who live in the house in shifts are saints.

I know this will sound like we are terrible people and have failed him as parents, but to be honest I think this is the solution that has given us an option to continue in a relationship with him. Otherwise I just don't know how we would have coped with things on the downward trajectory they were on.

I guess I am posting this because OP's DH said they will eventually move out and lots of people have doubted that. It may not be possible, or appropriate, or desirable for many, but it can happen. OP's description of life with her DS struck a lot of chords with our own experience so I thought I would share a tiny bit of our own trainwreck journey.

Bracing myself to be torn to shreds.

Oh bless you love. Sending you hugs.
Have you got someone to talk to in real life? X

I have two autistic toddlers and am terrified for the future for many reasons. The main one being I don’t think me or my husband will live to a very good age and then who will look after them?

It’s hard reading that you’ve never been proud of them. My children are so delayed but every little thing they learn I burst with pride as I know it’s a hard fight for them to do anything like others their age. They aren’t allowed to even try and be in the nursery plays or nativity as the staff say they won’t cope and I accept that and I know they’re right but it hurts. I will never ever care if they don’t win an award though? I judge them on their own merit, not how well they do against other people.

You are many years down the road ahead of me though and goodness knows how I’ll feel when mine are the same age as yours. I currently get about 2-3 hours sleep a night and the stress has caused me so many physical symptoms and conditions. I dread to think of it getting worse. It’s incredibly hard. All of it. The worry, the stress, the need for a break but never getting one and the constant looking back to the past or looking forward to the future. Nobody can understand unless you’ve lived it. The lack of support is horrendous. I just want the very best for them and for them to reach their potential and I’m scared I’m not capable of that.

Oh my lovely, sending lots of hugs to you. I'm a SEN parent as well to two children and some days I end up crying because it's just so hard... It's absolutely NOT anything you've done. You sound like an incredibly caring Mum - look at everything you do for your children.

Things which have helped me:

1. Using AI for drafting for some of the SEN admin stuff, e.g. DLA forms.
2. Two cups of tea a day. Mandatory (or some other little self care time carved out for you).
3. Finding my tribe with other SEN parents (I also hate groups) but have found some lovely SEN parents at SEN activities, where no-one bats an eyelid at meltdowns, etc.
4. Frequent communication with schools to keep them in the loop about current triggers, successes etc - I bet your children have things they are good at?
5. We don't tend to do parties (unless they are soft play ones). 'Normal' parties are wasted on my two as they just get dysregulated from all the noise / busyness. And that's ok. If they are getting upset, it's not worth it (same for play dates).
6. Reminding yourself that you are human; you didn't sign up for this but you are doing your best every day.
7. Everything is a phase and things will pass - some things will get easier, some things will get harder - just like NT kids.
8. Crying in a car park is ok sometimes. Follow this with a little treat for yourself.