I am thinking about stopping work to care for my son

[Ronifromwales]

Hi all

I'm new to mumsnet and will benefit from the wise opinions from any willing parent or carer out there.

I work full time and I have got a 4 yr old son who is in the autistic spectrum (not diagnosed yet) in full time education at our local school special needs unit. He has got a statement of special needs and the education side of things is being catered for. However (and obviously) his statement clearly says that his intervention will need to be complemented at home and although my husband does the school run and looks after them at home after school, I feel that he is often too tired to do any more with the kids and they end up in front of the tv until I get home at about 5.30pm (I leave home sometimes without saying goodbye to them which is very sad).

My husband is a minister locally and has also got a full diary, including occasional conferences and trips and I have got a full on job which is not very flexible. They allow me to attend doctors appointments but have refused to grant me 4 day-a-week contract, to allow me 1 day to catch up on things. I have got to attend doctors apps, school meetings and fit in food shopping, ironing, housework and church at the weekends, plus events organised by church on saturdays and visitors as part of my husband's community work. This means more tv for the kids and my not being able to give them any attention or support and dictating to my husband (who has got a more flexible diary) what to do with them when I'm not there.

My son doesn't join two words, he can't dress himself, he doesn't use cutlery very well, he doesn't drink from a cup without eventually tipping it and he is not potty trained. Now that he has started full time school I can see that he is starting to use the fork better because they are teaching him. Most of the time, I'm too tired to bother and end up giving him a beaker and letting him get on with eating with his hands because I'm in the middle of housework or dressing him myself because I'm in a hurry to get to the supermarket. many times he comes to me with a desire to communicate and I can't because I'm doing something else.. I push him away and only notice what I've done later on... My life has been hell, I have no time for myself or the kids because work has taken over my life. If I work part time, I won't be eligible for the carers allowance, which is 400 a month or as much tax credits (my son received mid rate disability allowance). the point is, if I stop working I will as worse off as if I work part time as I won't have any benefits but I will still have to fit housework in outside working hours. I'm at breaking point :(

As my son is showing signs of improvement, I feel that I could benefit from two years at home to crack on with the programme and to help him to acquire self help skills, instead of just trusting the school or my husband to do it. The school doesn't put any pressure on us, it's like they know we can't do much for him and they just get on with it which makes me feel awful. They did mention that I would benefit from coming to collect him sometimes but work doesn't allow that either. I'm his mum, for goodness sakes... :(

Financially we will need to go on the debt management scheme and get rid of luxuries such as holidays, sky tv and posh phone contracts. I can't live with the guilt of not ever being there for them, never taking them to school or picking them up! not doing my daughter's hair in the morning and her telling me that she will get up at 6.30pm so that I can do her hair. I want to be there for my son and daughter at this time of need. What I have now is 35 hours a work a week and 15 hours with the kids if I'm lucky. This is not life!

Have any of you been through this? I would appreciate some advice and support. It's very scary to go through such a dramatic change and I'm not sure whether the carers allowance will apply to me if I give up work but two parents working full time is terrible when you've got a child with severe learning difficulties and lack of self help skills... :(

You'll be fine. As you are so well thought of at work, is there anyway you could freelance? Am I right in thinking you work in Uni? How about proofing PHD work? Translation work? I freelance from home - it keeps me sane and it's lucrative. But for the moment, focus on the DCs. And do the Hanen course, it's brilliant and will have the added benefit of helping you reconnect - its all play-based.

WilsonFrickett- I have worked as a research administrator and can do transcribing of interviews and lectures at home. I can also speak Portuguese (my first language) and worked at a tutor at uni before kids came along. That was just to keep in touch with the teaching soide of my career. The pay was great and it was just planning for 1 two-hour lesson a week. I will also register with translation agencies for the nhs and police as well as the uni temp agency. They said that they would call me in but they also said that they didn't want to see the sight of me in the first 6 months at least lol. As 4x Who said has suggested :c) I need a rest and also to spend time learning about my sons specific difficukties.

Went to sleep at 2.30am, have got 3 ulcers in my mouth and still skin is so dry. it will hopefully get better next week. hugs to all xxxxx

Sorry about unedited text above, still can't edit stuff that has been posted. I'm typing from my bb. Perhaps this is why I haven't been able to sleep. Too much time on the phone. :(

Hi roni Little bit late here, but I think you have done the right thing. I took some time off few weeks ago and was the sole carer for ds(2) during that time. He was a different person after that. Ever since I wanted to give up work and look after him, but decided to get some help first and see how it goes for the next three months. But I will be more than happy to jack it all in, if it means that ds gets the best care for him.

Thanks Dev, my ds calls me dad because my only words to him during the day were bye first thing in the morning, hello first thing in the eve, then dinner time!, bed time! I will never be able to help him as much if I don't dive in and learn about his difficulties and how to cope with the symptoms. I also feel isolated because don't know his school teachers well, just for parents eve, or other parents in his unit... :) I've cried bucket loads and dh is saying that I need to put myself together. I really do!

Give urself time to get your head round things, everything will fall in place in its own time...I will repeat what zzzz said to me yesterday... "its a marathon, not a sprint".

Roni
I think you've answered your own question really.
Sounds like you need to give up work for now and concentrate on your children. It sounds to me like this is what you feel you are being drawn to do.
You will get £55.55 PW carers allowance. As others have said if you go PT at work you can earn up to £100 PW and still get it. They also allow for childcare costs and pensions but not sure of the amounts they allow.

BTW I am now doing my PGCE P/T after doing my degree 2 yrs ago, despite being lone parent to 2 SLD boys (Fragile X syndrome) and it's not easy but it's ok. I waited a long time after having my boys to do what I wanted, had to give up my job in a bank as their needs were too extensive and I don't regret it as it's given me the chance to do what's needed with them and for them and also for me to be here when they get in from school etc.

Being a minsters wife you already know that money isn't everything and that you live to your means. So what if Sky goes and the posh mobiles. They're not the things the kids will remember anyway. It's just 'stuff' is all. they'll remember a happier mummy who was there to do fun things with them.

I'm also in Wales, which part are you?

unpa1dcar3r- You sound like an inspiring and devoted mum, like all the others who post here. It is great to see that you took the plunge and haven't regreted it! I just decided and I'm now thinking about the consequences. I knew that if I looked at the financial implications I would never give up.

I have also got a teaching degree and will volunteer to help in the school to start with. I really want a chance to help in the special unit but with my son being there I don't know if they will feel that it will affect the way he behaves. There are a lot of behaviours that my son has that I can't deal with and I am not sure whether I would feel a bit vulnerable either. He manipulates me with his strong personality and cheeky smile (and lack of time) a lot of the time and he gets what he wants. I will have a chat with the special needs coordinator and will accept the advice that the school is giving me, even if it means volunteering at a different SRB.

I didn't know that they also allowed for childcare costs... I haven't come across that when doing research... will definitely look into it. As far as part time work goes, I don't think I can at the moment due to appointments coming out of our ears (4 already this month plus occupational health that I haven't had the chance to do with him because of time). He chews all his clothes (collar and wrist). :c( I also need to find some parent support groups and to develop such network. I will give myself 6 months at least and then see what I will do from there.

I'm in Cardiff and you?

Dev, you're totally right. I've got to chill. My mum is now coming for 2 months next month and I will probably feel more relaxed then. I'm Brazilian and she is coming a long way! I will probably be to busy with her to think about work for at least 8 weeks. Hopefully I will have got rid of the withdrawal symptoms when she's gone :c) the best thing about it all is that I have made the decision being in my dream job, which I now do with my eyes closed, full of prospects and working with lovely people (mostly). It wasn't a decision made because I couldn't cope with work... They all said they'd do the same and I had the ones that said that they have regretted doing it and it's now too late, so I can't go wrong, really... I don't want to regret not having done it, for sure.

sorry, some of my colleagues have regretted not doing it... I mean.

Hi again - my dd has just been re-diagnosed with glue ear. I feel like I'm back to square one. I'm thinking of giving up everything to make sure she doesn't slip behind at school. Trying to get back into work and study and it's all just too much.

Roni, I wonder if you have a spare room in your house that you can rent out to a student or other person to get some extra money. I don't know if you own your house but if you do, Google the Government's "Rent a room" scheme which allows you to receive the rent from someone renting a room in your house without paying tax on it (up to a certain amount). It's an easy way of getting some money in if you can do it.

Hi Roni, thanks for the nice words. I'm as North as you can get.
I think there's a good SEN school near'ish to you in Bridgend who might be glad of your help if you can't work in your sons place.

My boys also chew everything; used to be collars and cuffs. Now it's everything! Especially eldest. Caught him eating dog biscuits the other day! You can get these chewy things for oral sensory stimulation but they're expensive and a good chewy toy works just as well. Saves on clothing! The money I've spent on coats alone which they've shredded...phew!
Also thick milkshake drunk through a straw is good for oral stimulation and also for speech as it gets the mouth muscles working harder.

realhousewife - I know where you are coming from. My son started with glue ear too and to this day professionals are not sure what his diagnosis is. It's complex and unclear. I put him on soya milk which helped with glue ear but looking back I would have switched for rice milk. Most of them contain calcium and added vitamins. It was a miracle for my ds. I tried also a gluten free diet when he was younger but it was inconsistent because he was in nursery. He has been back on the gluten/ soya/ casein free diet since september, also free from artificial colours, preservatives and additives. His attention and eye contact has improved, behaviour too, school reported stolls are firmer. I've decided to stop because I can see that he has allowed me to teach him and he is taking in more, also it's hard work cooking from scratch. My dcs are more important to me than anything at the moment. I have gone wwith my heart. I won't get this time back. :) I'm not sure what your circumstances are and you can only get carers allowance if you don't study full time. It might be worth talking to the Contact a family (they've been excellent with us).

pippop1- my husband is a misnister of a church and we don't own the house, unfortunately but thanks for the suggestion!

unpa1dcar3r- what a shame u are so far... If ure ever coming round this end, pls let me know. My daughter has recently bought Cookie the playful pup and my ds loves his rubber bone lol we have to keep it safe so will look at chewing toys. Were waiting to see occupational therapist so will address that.

I just want to say to u all that our kids are special gifts of God. He knows we can take it and remember that even when everything seems bad there's always someone u can talk to. There are alternative therapies that might help, like diets supplements, ABA etc and you can research and find charities that will help, fundraise etc. I'm up for anything and I won't let autism take my son without a fight! We are all fighters here... I'm happy he will have his mum helping him at home, nothing else matters it will all be sorted. I'll have a call from an ABA therapist tonight and she will visit, well go through his statemnent and if I need to fight with the LEA to change it to include ABA I will. I will wash the therapists toilet to get the price down if I see it will help him! Love to all xxx

So true Roni.
Funny how we can be the meekest and mildest little wallflowers (not that I am) but when it comes to our kids....wahaaaa watch yourselves people cos we mean business!
Hope you don't have to resort to toilet cleaning though. Surely we all do enough of that-and worse-at home

And yes our children are all gifts from God and I thank Him all the time for blessing me with such fantastic little monkeys! Plus my other 2 girls (one of whom is flying to Oz for 2 years now).