To wish I’d never had children

[thegreenlight]

I have 2 autistic/adhd boys 8 and 13. The eldest has been difficult all his life, spiky and hard to please. Awful behaviour at school from nursery. Behaving inappropriately with others. He hates talking about anything other than his interests and struggles with friendships but very bright. Currently out of school due to mental health issues and we are waiting for his EHCP to come through. I genuinely can’t think of a single time I have been proud of him like a normal mum would be. No awards, sports, good reports, friendships. Everything has been fraught and hard. Youngest is the opposite, developmentally delayed and very loving but again, no sports, friends or normal activities. He too misbehaves at school.

My eldest was just shouting about no one understanding him, how nothing ever goes right for him and how his life is so awful and my husband said after when I was upset ‘they’ll grow up and leave and then it will be just us again’. So what was the point? Why bother having them? I never wanted children, my husband did and basically gave me an ultimatum that at some time in his life he wanted children. We waited until I was 30 and had been married 9 years. I just wish I hadn’t caved. I take very little joy in them. My life has been such a mistake.

It is hard to believe this but it will be ok.
These are challenging times but it will and does get easier.
The children love you and you do them.
F society norms and expectations.
You do you.
This is your life make it what you want.

I think this all the time as someone who works with disabled children (and has children on the spectrum myself.) Even more so when the parents are getting older.
Something that is also shocking common is having one obviously disabled child, and going on to have another (very often more seriously disabled) sibling. I wish there was a way to educate people more on the risks and the reality because it's such a hard life for all involved.

Have you tried going to therapy? It might help to have a space where you can regularly go and talk about all of this. It all sounds very hard. 3 years of PND is brutal. You sound like you have a lot of stuff to unpack and think about.

I found it was worse when churches/ church leaders and congregants were awful because they are saying one thing and doing another.

As a disabled single parent of two autistic/disabled children getting to church on time was hard, yet it was said on more than one occasion by none disabled, married parents of nondisabled children that they could not understand why people <hint hint me> couldn't get to church on time.

Other people in church were wonderful and caring, but unless the general ethos is caring, then it is not much use.

As if the husband would do fifty percent of SEN parenting.

@SaySomethingMan yiur comments really are unhelpful

Hi op
just to say my eldest (Audhd) will be 20 this summer and it has got easier. I’d say there was a real biting point at around 13/14. And your less academic youngest will find something they’re good. Have you tried drumming lessons by any chance? Also neurodiversity doesn't come from no where. You mention the rejection you’re preempting? Have you heard of rsd? You maybe be adhd and most likely your husband is ASC. This is often the case. Tonight i’m wishing I’d stopped at 2!!!

I know it’s been said but I think you should speak to the gp about therapy. Just some time to yourself to unpick thoughts and have the opportunity to feel your feelings.

It sounds incredibly tough and I think having some support may help you to make small steps in making your own life more fulfilling because it sounds like you’ve tried so much but are stuck in a rut that probably needs some outside support to get you in a better place to deal with it.

It sounds like you are doing a great job, and I can understand the grief you feel at being dealt this hand.

Absolutely. You don't know what you are getting. Kids do not come with a read out either to tell you how effectively you are parenting. I always thought this when mine were being autistic/overwhelmed. You can not tell if you have acheived 100% best outcome or not in this situation, whether you have done pretty well or fucked up completely unknowingly. (I know I have fucked up and realised it sometimes, but we are all human and parenting is difficult, exhausting and sometimes we make mistakes. Unfortunately making a mistake with an autistic kid can be very loud and obvious)

This
Parenting children without special needs is exhausting and relentless at times and it can all feel overwhelming.
You are allowed to feel as you do OP.
Sooooooo important that you take care of yourself..
One moment at a time.
As hard as it is, please try to stop comparing to others. Nothing to be achieved and upsetting for you.

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.

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

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.

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.

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.

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.

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.

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.

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

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 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.

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.

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. 😊

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.

💐💐💐