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

I have been there with how you are feeling. I have a son with sen. I have been angry, sad, resentful but suddenly I'm happier and more content.

Someone to talk to would help. You can get into a tailspin and not able to rationalise,talking can help.

Definitely apply for dla. You need to write about how your dc is on their absolute worst day. There are advise sheets on some of the websites. Include any letters for healthcare professionals as evidence. The extra money will help you with therapies for your child. We used some to educate the daycare and they could then cope better with DC.

I chose to go back to work and my husband chose to be the stay at home dad. We would have struggled both to work. But our son starts primary school this year and DH is going back to work.

Where you are right now. Is not where you will always be. It does get easier. And don't listen to those that judge you. Unless they have walked a day in your shoes they don't know how it feels.

Has your son a diagnosis? That can help you identify which charities you can turn to for support.

But with your new salary from the job, would that not cover a Nanny or specialist childminder?

Take the job and get a nanny (could do pt nanny and where his is now) or try and find a childminder that specializes in additional needs.

In a years time you will be fighting for school place that can take your son and fighting for him all through his childhood, you'll be glad to have a good job then as it will help tremendously if you have to pay for additional and quicker diagnosis and equipment (yes I know you shouldn't have to but sometimes having money gives you options)

By the sounds of it you will regret turning the job down and then resent your son. You need to look after yourself. Dont rely on your husband for the household income - your child is his responsibility too

Take the job.
A lot of children with additional needs have nannies or go to residential schools. Where they are happy and stable.
Don't beat yourself up about it. It's not fair for you to have all the responsibility on your shoulders. Husband working FTime in London has a lovely life in comparison. It's about 50k per year, but I'm sure between you, you could manage.

It is so hard looking after a child that does not interact with you. I have found it the most heartbreaking thing in the world, and the hardest. It is a pain like no other.

ABA and the V B map has given me back a child I can communicate with, if this is an option for you please look into it. Speech therapists have never been able to command his attention but his ABA consultant did immediately.

Sorry for the digression, please feel free to pm me if you want to.

The support and advice here has been fantastic so my response isn't trying to throw a negative on anyones suggestions, I'm really just trying to lay absolutely everything on the table x

40k Pro rata would not cover a nanny and commute to London on top. I know people say to take it even IF you make a loss, but really? I just don't see it working. If I'm going to spend so much time away from DC then I want it to have some benefit financially. And I know deep down DC would be happier with me for the most part so that seems like a Huge thing to do - People always moan about London working, it's commute times, etc etc. So all the coupled in with struggling to juggle DC day to day and maybe not even break even seems like it really isn't wise? Maybe I'm totally wrong in saying that, I don't know yet what's best

DH won't sacrifice his career and cut down so he can juggle DC. He just won't. I know some people will argue that I should LTB but I don't feel like I can. He's inconsiderate and selfish maybe in that sense but he's decent otherwise. I really really can't stress enough how I don't have the mental energy or finances to just leave. So I will knife his unwilling to help behaviour for now as focusing on it will do 0. He won't help, that'd that

I think claiming the DLA is a very good idea so I will be doing that. I didn't before because I have been told it is very hard to get unless your child is severely disabled since it isn't as obvious before age 3 the their care needs are much more of that of an average toddler

In addition to that, on PIP (adult version), you have to say your good and bad days, and I think they do directly ask for your to say about good days. Is this not the same for DLA? I suppose its good they don't do a face to face like PIP

The job is paying fantastic pay but for the actual role, your earning potential is capped at about 50k or 60k at the Very best, and those jobs with that higher salary are hard to find even in London

Financial it might be a loss now but think about the long term - when he is at school he wont need ft nanny or nursery just wrap around care.

Can you negotiate wfh 1/2 days a week and save on travel or do flexible hours?

Your husband needs to step up - that's not a partnership - that's leaving you high and dry if you were ever to split - it gives you no independence from him now even when you are together

I have a son with SN - I have always worked full time in a moderately paid job. I do this for both myself and my son. It is often difficult and exhausting but I would always recommend working if you can. Now is the time to get organised. Work to get a diagnosis and apply for DLA (don't just assume it will be refused - get some good advice as to how to complete the forms). It isnt a huge amount of money but it will help. Start working to get an EHCP to help to map his route through primary school. Always think and plan ahead. For a number of years the equivalent of my salary was going on childcare (we have another child) both went to nursery and then a childminder. Consider how much more each month you will earn in this new job - allocate that money to supporting your son and allowing you to work. Also go back to the SN boards - in chat you will get a mixture of advice - some from people with SN children and others who think they understand. People simply don't understand unless they have walked a similar road. Good luck - you will be fine but you need to be strong.

Would your employer.consoder long term working from home? Even if you had to be flexible in going in sometimes , maybe they would help.
Is there any way you could afford some help ( definitely claim DLA) on non nursery days?

Re DLA you always write about your worst days, nurses advice on hat one. So if some days he's hard to bathe because he gets upset and fights and some days he lives it, you write about the day when he fights.

The mobility element should also be eligible to you as he's not mobile.

Ignore the "but all 3yos need help with that", wow it down anyway.

Friends have stopped seeing us. I know why. because they're shit?
Lots of friends want play dates until they spend time with him. He doesn't interact with other kids but if it would help youu87 to go, still go. My DS isn't as complicated as your DS but I stilled the adult company, even if DS stayed in his pushchair.

I'd try and find a playgroup out meeting for kid surgical needs, it was a lifesaver us us. Do you get portage? Community nursing?

I just feel like I have failed and have achieved nothing at 22 trust me, you are not a massive failure, your amazing x

I'd cost up childcare but if you turn it down, remember he'll be in full time school in a couple of years, keep your skills up and don't give in.

Also tell them you'd how to be able to take it but now aren't sure if your childcare upwind are doable etc be see if they offer a compromise or say OK no worries

I feel for you .you are very young to cope with having a child with SEN,and it is very difficult anyway even with older parents .You need to think outside the box now. Can you WFH at all? Maybe with Covid 19 you may be able to suggest this .If you could maybe move to Wales, Your DP could do Childcare along with Nursery if they are up to it.If you try to increase hours in Nursery for DS and he doesnt take to it, then you may make it worse in the long run .Your life may not turn out how you want it to Im afraid .Whose does really! Can you join a support group and maybe meet up /skype other parents in your position? ATM I would concentrate on getting DS sorted and look for work around him .40k is a good amount obv but you also need to factor in the stress of working and balancing the needs of your DS .

I think you have to do what’s right for you. But you have support and backing here to take the job if that’s what you really want to do, but at the same time I can see why it’s not the right time for you. What’s the commute into London like? And how long would you be out of the house each day? Does childcare work with that? How much does the commute cost and is the pay still higher taking that into account?

When you say your DH is unwilling to help, have you asked him? Is it that he doesn’t want to? Or that he can’t? (Plenty of people will say that he should but it’s not so simple, and could affect his career too). The problem is that you’re essentially betting on your marriage - if you stay together you might be better off longer term staying home for now (my DH outearns me about 4x); if you split you might be better off with a career.

FWIW I turned down my job because the pay was only slightly higher and after a longer working week and less annual leave, it was actually a pay cut, plus no annual increments. But I wouldn’t rule out that particular job in the longer term. It just wasn’t the right time.

I’ve not been able to work for 20 years because my 2 dc have autism.
There were times briefly when if I’d been quick I could of got a years employment,but them everything fell apart again ,boys expelled from special school and mainstream,Me left with them at home 24/7 with lea providing tutors.
Absolute nightmare
I understand how you feel ,I left a job I loved ,and was very good at.
Sending you love 💐..
It’s really hard juggling your child’s needs and your own ,especially when your child’s needs are so great ,and you have no help.
I find it helps to seek out others in the same situation and turn to them for advice and support ,there may be a local group you get in touch with

Hi OP,

Didn't want to read and run.

Have a 6 year old with SEND. It is undoubtedly hard and you have a lot on your shoulders at a young age so I can appreciate it must feel a huge responsibility right now.

Your description of your son at 2-3 years sounds very much the same as mine at that age. He was non-verbal and not hugely attentive to anything other than his special interests. It can be monotonous but try your hardest to play and engage with his interests. If he is lining up cars - maybe hand him cars and comment on them. If he is building towers, count the blocks. The more you engage in his world the more he will open up to you.

My DS is 6 now. Has an ASD diagnosis. But he chatty, has a wicked sense of humour, is affectionate, he can read and is interested in a broader range of things. The additional needs are clearly still there but he's a completely different kid to the one he was at 2.

It's still very early days with your child and you might be surprised with what they can accomplish and how much your relationship can change.

Handhold -

You know what makes life with SEND kids easier? Money. Honestly. If you can pay for specialist therapies, respite etc you will have a much easier time in the long run.
You’d be mad to let this go for such short term gain.

Take the job!!!!!

Hire a nanny, or find a more suitable nursery.
Otherwise you are going to get trapped being a carer for you dc forever.
You are still young, if you don't take this the opportunity it might not come up again.

Your dc sounds like he will always be high needs.

Better to earn money in an interesting career and pay someone who has the vocation to want to look after SEN children/adults.

I would also say, the chances of you staying married are 50/50 (like everyone else) and if you spilt up you really will be up shit creek if you don't have a good job.