Is it normal to feel like DC has ruined your life at times?

[CoDerry]

I'm not entirely sure why I'm writing this. I think I just need to rant because I don't want to say it out loud, the words would hurt me to say and all I would think of is DC's little face...

I have just been offered a new job that will pay me 40k (pr), working 4 days a week. DC has additional needs and this takes up a lot of time with appointments etc. His dad is not hands on and works FT in London so can't help juggle. In fairness, his job really doesn't have any flexibility. My job role only really exists in bigger cities or where there are big companies about.

I can't take the job. I applied in dream mode, knew I could do the job but didn't think I'd get it. I've got it. But I'll have to let it go

At the moment I work PT in a lower paid role that doesn't really match the skill set I have. I'm bored. But I know being there for DC is so important and the thought of letting him down tears me apart.

I'm just so done with it all. DC doesn't speak, can't understand me. He is almost 3 yet we are in complete baby mode, it's like a mobile baby that doesn't understand, interact or look at you. I love DC but I want to cry at how life has turned out for me. He won't play with me, won't even look at me mostly. He needs constant attention, high needs.

I asked his nursery about increasing his hours before the Covid stuff started and they told me it wasn't a good idea, he wasn't suited to it etc.

Even things like going on holiday don't work. Everything we try gets ruined by him. We can't do anything nice. Even a simple family holiday didn't work, DC hates it all. Only really happy in his own house. I like to get out and about, it helps me cope. But DC struggles with this.

My parents are in Wales now so can't help with anything. His dad's parents are deceased, God bless them. His dad has a lovely step mum but she's busy with a job she is often working 6 days a week.

I just feel so burnt out and that worries me, because the real hard work hasn't even started yet. He's still only a baby.

The thought of telling any employer that I'll need all this time away and flexible options for appointments fills me with dread. I have no life.

We cope fine financially but it's just 'fine'. We could be doing so well if I went back to my career.

I hate this life. I feel like life is so restricted. I'm 22. I'm too young for this rubbish. Argh, it's hard

Need to add also that moving to Wales isn't an option because he won't go because of work. Plus not a lot of jobs there

On wow, that sounds really hard and I have no words other than try to build a life which makes you happy. I would personally look to relocate closer to your parents, particularly as your partner isn't able or willing to help.

Despite your additional note, I would still look to leave. Could your partner live in a house share and come to Wales for weekend s?

Thanks Land

I think moving closer to my parents is a bit out of the question though. The jobs are scarce, it is so remote and I think I would feel trapped there. Plus they couldn't provide childcare (not that it would be the aim) as they work too. It's all a bit of a mess really

You are right 22 is too young and you need to make a change if you are unhappy x

This is such a difficult thing when you have children with SEN. I know I was a sahp for longer than I might have been because of appointments, however it does settle down a bit as they get older and you don't have the usual small kid vaccinations etc to do as well.

Could you consider a nanny? Some are very experienced with SEN and that would give him more 1 on 1 time at home if extra nursery isn't suitable?

You could ask the new job if they would be willing to have some flexibility around you wfh occasionally to give you more time to cover his appointments? (Really your DH should do this too. It's only fair.)

It's brilliant that you got the job, don't say no straight away.

Sorry I wrote DH but you didn't say that! My mistake.

His nursery is being a bit uncooperative. Could you look into having somebody come to the house to look after your DS when he isn't at nursery. Even if it meant you were paying a lot out in childcare. You need to have a life and things sound really tough at the moment.

Oh bless you you’re far too young for this I was 28 when I had my life time disability kid and that’s hard enough, yes other families you know with no disability kids will manage to continue to both have careers, but it’s much harder for us especially if there no extended family support

I’ve spent many years being bitter and twisted as so much of people’s worth is based on the job they do so I’ve spent my 30s feeling pretty worthless but as I approached 40s people are less career driven as they mature and realise it’s not the be all and end all, that’s been a big help as I’m afraid in my experience there’s one thing harder that being responsible for a child with a disability and that thing is being responsible for an adult with a disability “full time” education post 16 is 15 hours a week, it’s v difficult to work within those hours if your child isn’t independent

Sorry if I’m being too honest

Sending big hugs. I have three primary aged kids but two have complex needs. We had the same issues with nursery. I’m doing a PT role that suits the kids but I only started earlier in the year I couldn’t leave the kids.

Could you look at a nanny or a Sen nursery?

Life for us is very hard. All the things people enjoy like holidays are hard work. Lockdown has shown us how our lives really haven’t changed that much only that the kids are home and we are working from home.

Does your son have an ehcp? What does your do suggest? You can’t be the only one to sacrifice.

I think you should take the job if you possibly can.

What's the worst that can happen you have lots of appointments and they tell you they don't want you anymore ?

and put pressure on the nursery to take DS more and instigating him being assessed. They are fobbing you off.

You need more support but it's actually very difficult to come by.

have you claimed for the old disability living allowance?

Having a special-needs or difficult child will break anyone. It has certainly broken me.

Would a nanny work as a better option for childcare?

Its a difficult one my husband works in an industry where you have to give your all if you want to progress and earn decent money,

so rewind 15 years he could have left that industry and we could have both took reduced hour jobs on low wages and shared the responsibilities, we were still young and didn’t have the skills to command anything more back then, and still be on those wages now,

or me bare all of the brunt of the responsibilities to allow him to progress and now earn double on his own what the two of us would probably still be earning

We went with option 2 it works for us but I haven’t lost my mind I’m fully aware of the negatives of my position

Without being funny, how is she going to pay for a SEN nanny on £40k a year?

OP you are only 22, you have youthful energy on your side. How frequent are the appointments? If your child is disabled you are entitled to unpaid parental leave in blocks of one day. Sometimes things fall into place just because they have to. Take the job - what do you have to lose? If it's unsustainable, leave. You are no further back than you are now, with some extra experience on your CV. Wishing you luck, caring for a SEN child is tough.

Please hire a nanny and take that job! Our nanny would then have us for occasional weeks for my parents to go on holiday. It sounds like you're both high earners and could afford it.

Thanks for the replies

I never felt too young to have my son, until it became apparent he had SEN. We breastfed and are still breastfeeding, we need had any sleep issues, I wondered what all the fuss was about. Then he reached 18 months and it's like a switch flipped. I was shamefully smug until then

Friends have stopped seeing us. I know why. They're too concerned and different from DC's detached behaviour. Lots of friends want play dates until they spend time with him. He doesn't interact with other kids and it's very apparent it's a waste of time. Although I keep trying. Someone had a small party for their DC in January and DC and one other child with additional needs was the only two not invited. I didn't think this crap would start until school age.

I just feel like I have failed and have achieved nothing at 22. But even more so, I can see myself achieving far less because of how things are.

We don't claim DLA because I thought they had to be 3 at least? I know you CAN apply at any age but it isn't worth it until its very very obvious their needs are far greater than a typiczl child of that age

I don't think we could afford a nanny. We just don't have the cash there unfortunately

I would talk to your new employer. They obviously want you for the role, and all you are asking for is some flexibility. Have a chat to them, see how you can make it work. Agree with other options for childcare, it can be done but I know it feels really hard right now.

You are in an extra difficult situation having a child with sn and no family help..

My view might be unpopular...and I'm not talking about my own life specifically...but in terms of women's lives in general, then yes children are the one thing that hold women back in life. Massively so.

I think you should take the job. I don't understand why your husband is allowed to refuse to consider changing his work and yet expects the opposite from you? Why is DC only your responsibility? I know its easier said than done but no wonder you feel this way when it's only you having to sacrifice so much. Excellent childcare is available, even if you have to keep looking. And if not - maybe it's your DH's turn to take one for the team?

Oh my god, TAKE THE JOB.

Seriously. Take it. Work your arse off and prove yourself a good hire, then they’ll likely be fine about the appointments. He’ll be in full time school before all that long too.

Don’t give this opportunity up.

I can see this is difficult but...

I think your title wording is upsetting. What if something were to happen to your child, wouldn't you give anything to have them back? I would take the shittiest job going and be on minimum wage to have my child back.

Hi OP, sorry to hear it is so hard. You sound like you are doing brilliantly at such a young age. I had my first son who has severe asd and a genetic condition at 30 but I wanted to give you some hope that things can get easier with time. I really struggled when my son was 3 but things are a lot better now he is 9.

As others have said if possible try to maintain employment. I am lucky that I have managed to stay in a job I enjoy albeit part time and from home. In your situation I would really look into a nanny even if it swallows all your wages. We don't have any family support either so have to rely on paid help.

The other thing we found that helped with our son at pre school age was intensive one to one ABA which is something that a nanny could help with. This really helped in supporting his language skills in particular. It also helps with behaviour making things like holidays a little easier.

If you don't already get DLA make sure you apply and put down every little detail. I also found it really helped when we got a strong ehcp in place. My son now goes to a special school and is picked up by taxi at 8 and gets dropped home at 4 leaving plenty of time to work although school holidays are still tricky.

I think one positive thing that might come out of covid is that employers might be prepared to show a bit more flexibility for home working/hours so maybe you should not worry too much about this.

If you need any advice or help with anything e.g applying for ehcp, dla please feel free to pm me.

I would ask them if they will take you 3/4 long days a week and then look at getting a nanny for those days. You ave nothing to lose if the alternative is to turn it down anyway!
I think you don't do something for yourself, you will quickly loose yourself and you are too young for that.

From your post title I assumed you meant Dominic Cummings - not a fan but not sure quite ruined (but I suspect he has actually personally ruined some lives).

But yes, that’s very very hard. I have a high flying DH and a 5yo with ASD (and a 3yo). Last autumn I was offered an excellent job, but there was a commute involved and it just didn’t add up. On balance ‘we’ decided as a family that it wasn’t the right thing. But gosh it hurt, partly because I’ve always supported DH in what he wants to do, and I’ve always picked up the slack. He’s right, it wasn’t the best thing for the family, it would have meant more childcare and a commute, financially we would have been worse off and our children would have been worse off. But just once I wanted to do something for me. And I’m still a little bitter about it. So yeah, I hear you!