Caring for my child and struggling to work

[Jasmine4891]

Hi,
This will be a long post, so please bear with me. I really would appreciate some help.
My child has had seizures since the age of 8, he is now 16. He goes blank, and loses consciousness and can sleep between 20 mins to 5 hours after a seizure. Seizures typically occur 5 times a month and happen in clusters. Meds have not worked and he needs supervision to keep him safe. He also has learning difficulties and receives DLA.
I was a Teacher but struggled to work and care for him, so I left my job and took up Supply Teaching. Supply has been good as if he is having seizures I can decline work for that day and there are no repercussions regarding admin. I can also make his appointments without the hassle of admin. His current school is 30mins away, he receives a transport service, this has meant that I have been able to work Supply hours easily.
However, he is leaving school in July and starting a local college for 3 days a week. As the college is local, he will not receive transport, and will only attend three days. This means I will have to drop him off and collect him and I will have to look after him the two days he is not at college.
I can't see how I can continue to work, as I won't be able to do my Supply hours.

Another issue is that unlike his current school, the college has specified that I need to collect him from them if he has seizure episodes that affect his learning longer than 45 mins. The school he is at currently keeps him till hometime as they have a space for him to sleep off the effects of his seizures.
What do I do about work?
What are my options?
What help is available for someone like me? I receive a UC top-up. But will my future be one of being a full time carer on benefits?
I am desperate to work as I am trying to save for a house. I hate the uncertainty of renting. I also want to buy a house to pass onto my son.
I feel so stuck. I am 40 and know that buying a house is looking more and more bleak each year. I have been saving his DLA hoping to add to a deposit so I can buy a house for us, is it even feasible to get a mortgage like this?
In order to continue working I need a carer to help me take take of him, but that expenditure will mean I spend my income on carers and will not manage to save, that negates the point of working.
I also have a young teen and an 18 year old and am a single parent.
Has anyone been in a similar situation?
My son is wonderful, he just cannot keep himself safe, and I don't know if that will change in the future. Even if by some miracle the meds controlled the seizures, his learning difficulties make him very vulnerable, for example he still can't cross the road safely independently as there are too many things to process at one time, his spatial awareness has always been poor.
That's it really, just really panicking about my future and feeling stuck.
Thank you for reading till the end.

I am sorry that’s a difficult situation but just to check the dla that you are saving , do you know you need to tell UC once it gets above £6k

I dont know the answer to your question te help but I'm so sorry you're stuck in this situation. If I were you. I would consider whether your background as a teacher might get you some other more flexible work. I worked as a proofreader for text books during my post grad - boring as anything but surprisingly well paid and totally flexible. Then you'll keep your toe in the workplace with just a teaching hiatus while it can't work for you? Or maybe online tutoring - I hear that pays well if you have a background in an academic subject ie STEM etc...
Good luck - I hope you find something that works

Thank you for your reply. I set up an account for him for his DLA payments. He has been only receiving the payments for a year, as I didn't know he was entitled to any.

Thank you for replying. I attempted looking for work from home jobs, but the number of applications outweigh the vacancy by hundreds. I also looked at tutor work, I am a primary teacher and only found online jobs that were overseas, mainly in China. I obviously would prefer the security of a job in this country. I will look into proofreader.

My son has different disability but this is the life of a carer I've found. Eternal poverty and judgement you live off the state. Inability to save any money to provide for yourself in old age or to pass in to your children. Even if you can manage to get restbite care from social services they are very strict it's restbite and you must not work when it happens.

At one point I got an au pair to try to keep working but she couldn't handle the level of care my son needs. You say your son has used taxi service could you get an au pair/live in nanny and train them enough they can do the collage run and supervise the days you work and he's not at college?

Are you a single parent? Can his dad take in some responsibility? If not do you have family who would help? Do you have a spare room you could rent out free to a uni student in return for help with your son?

I assume he has an EHCP? They run until age 25. Ask for a review (should happen yearly) he's not safe to get to school on public transport and you want that in the EHCP. Parents cannot be expected to fulfil the EHCP, they dump as much as they can in us but the law is parents not responsible unless home educating. And it's education and HEALTH care plan so not restricted to school hours education provision.

Look up the LA transport policy. You said they won't provide transport as you live close. You may find the rules they have for distances works differently for the disabled. Appeal it anyway. Read up on disability discrimination. I got transport for my non disabled child on the grounds of disability discrimination. despite living close enough we didn't qualify for transport yet my disabled child couldn't manage the school run. I argued my non disabled child was being denied her education which was disability discrimination. I was expecting a fight luke everything else has been with a disabled child but they caved instantly. Sounds like you might be able to argue disability discrimination because despite the close distance your son cannot be unsupervised?

You said you are a teacher? One of my kids is home educated and does online zoom lessons frequently and goes to a tutors house for a face to face lesson weekly. You can work from home tutoring both one to one and classes. It won't be loads of money maybe but there is definitely demand for it. As a teacher you may be aware about the increasing numbers of children being home educated the demand for online or home tutors grows all the time. Although the law may be about to change so this may not be a long term solution for you.

I wish I had more advice. I can only say you are not alone in being financially crippled by care responsibilities. I often think we should all live in a commune, i would happily join a childcare and care rota if it meant I could work part time and be something other than a penniless carer with no social life or future. Not being alone all the time and having people around me who understand would make life bearable again.

Unfortunately it’s still classed as your money , money in a child account is theirs if they are the beneficiary owner. So Xmas and birthday gifts, money from relatives, reasonable pocket money etc but not dla. That is your money to spend in your child’s best interests. You can save it, but it’s classed as you capital so you can’t save it for a house deposit unless it’s maybe shared ownership and a very low deposit required. When UC do a review they will ask where the dla is being transferred to. You can have £16k total but deductions from £6k.

Hey! I am a primary teacher and I have started working online recently (coupled with supply) for more flexibility for my family.

Ring up your LEA and ask who provides the home learning service for children who have medical needs and are currently not in school. Some LEAs run it themselves and some outsource to a charity or organisation. Try and get in as a tutor with them.

That is what I currently do and it’s working very well. I tutor children online during the school day who are currently not attending school. Mostly uploading custom made lessons rather than video calls so very flexible. Most are children struggling with SEMH who currently cannot cope in their setting. I am technically self employed but all my work is fed to me through the charity that has the contract for this in my local area.

Also if you look on TES, rather than just your local schools jobs page, there are often job adverts for tutors in the school day. Some online some in person depending on the company.

In addition, I’ve found a fair few people wanting tuition an hour a week after school or weekends. Mostly for year 5/6 kiddies with schools becoming increasingly stretched to meet everyone’s needs.

Good luck and hope you can build up some work to suit your new situation. I have found having a few income sources rather than relying on one is good so you’ve not got all your eggs in one basket if one goes quiet. Supply has gone very quiet in my area with schools struggling for funds and tutoring demand gone up.

I’m afraid it’s probably not the sort of employment where you could secure a mortgage by yourself is the only down point but it is an income at teacher salary level. Maybe after doing it for 3 years after 3 decent tax returns if you can prove income is steady you might be able to borrow but I’m not sure on that.

Good luck!