Should I give up work to become my sons full time carer?

Hi All. This is the first time iv posted but im hoping some people could feedback some advice or share there experience to help me make a crucial decision in this cross road.

My son is 5 and diagnosed with high functioning ASD, he is currently non verbal, has no awarness of danger or toilet needs. He cant feed himself, clothe himself or wash himself. He current goes to a SEN school which have helped him developement dramatically in the 4 months he has attended. His father walked out on us in June of last year and only wishes to see him for 2 hours a week. So since june i have held dowm my 18hour a week job within the council, continued to study my law degree (2nd year in) and took on house duties as well as care duties for my son. December just gone, it took a turn for the worse and i had a break down and am currently signed of sick from work. This has given me time to spend more time with my son, more than just getting the standard routines done. I have continued with my study and begun to enjoy it again, and thus the question comes into play, i am one human and not a robot something in my life has to go.. i would never give up being a mother despite the struggles we face daily as many of you know, so its my studies or my job. 

When i have asked what susport i would receive if i quit my job the only answer iv received is "it depends on if it is a reasonable reason to make yourself unemployeed" when asked what a reasonable reason would be they wouldnt give me a defined answer. Therefore i dont know if becoming my sons full time carer is a reasonable reason. I have no child carer available suitable for my sons needs, not to mention trusting someone you dont know with your non verbal son raises a huge amount of anxiety. 

Any advice would be appreciated. Thanks in advance. 

Stacey 

  • Hi Stacey,

    I think that having to give up work or totally rethink career plans can be very usual when your child has additional needs, for a plethora of different reasons such as; having to make time to attend appointments, there is very little child care available for SEN kids (particularly post 11, when other kids their age are able to be left to look after themselves and our kids can’t,) the fact our kids are vulnerable and not usually ‘flexible,’ and do not respond well to strangers or changes to routine; and not least the additional stress and exhaustion that living with a child with additional needs brings. Therefore, I think your current dilemma is one many of us have had to face at some point.

    I for one think it is really healthy that you have openly and positively acknowledged your needs, faced the fact that we are all only human and that our energy is finite, we can all only do and give so much before stress and burnout set in to warn us of our own fallibility. And there is absolutely no shame in that.   

    My personal opinion is that your studies are far more important than your job because it’s really vital to try to keep hold of something that is important to you, to give you a sense of achievement and personal fulfillment, and the qualifications you gain may lead to a better job and better opportunities in the future. However, I believe you really need informed and professional advice about the benefits system and what benefits you may be entitled to, and how to apply for them.  

    So I would suggest you ring the NAS helpline, (and Scope too) who may all be able to help you with this. Drag out this time off sick for as long as you can in order to use it to gather as much professional information as possible (and don't hand your notice in until you do have a plan in place.)  You may even wish to contact your LA Social Services and request a Social Care Assessment for your son as the Assessors can often inform you about what benefits you and your son may be entitled to - again I expect the NAS helpline can further advise you about this route too.   If you Google the Disability Charity ‘Scope’ they also have benefits advice pages and online calculators etc.

    I don’t know who you asked, but the advice you were given about not necessarily being entitled to Unemployment Benefit (or the Universal Credit equivalent) is true as you are not usually eligible for this unless your unemployment was not of your making i.e. you were made redundant etc. and you have to fulfill ongoing criteria to remain in receipt of this benefit, such as evidencing that you are job searching for 40 hours per week, every week etc.  The advice you received about ‘possibly not being entitled to unemployment benefit’ suggests to me that you may have asked the Job Center (?) however, in my experience, they are not the best people to ask about other (Disability) benefit routes.

    Given your circumstances, I believe you may not need to apply for unemployment benefits, nor go up the ‘unemployment route’ at all, and instead you may be better placed pursuing other benefit routes (such as Disability Benefit and Carers Allowance,) which fully acknowledge your sons difficulties and accept that you are your sons carer, and therefore do not depend on or pressure you to seek work.  

    Again, my best advice would be to ring the NAS helpline.

    Best of luck.