To ask WTF happens when neither parent can work?

[Thehonestbadger]

Our DS is almost 4 but is massive and very heavy for his age, size of a 6/7 yo.
He has non verbal ASD with significant learning difficulties. I’ve been caring for him, after being forced out of work because childcare (even well regarded nursery) was extremely difficult and only made available in limited amounts.

The issue is, I’m not very well myself. I have chronic IBS and DS is now pretty much half my body weight. I’m frail and weak and he fights EVERYTHING and is totally non compliant, there’s lots of dragging, pulling, wrestling, fighting, pinning down, biting, scratching… he climbs things constantly and have extreme PICA. Even the experts seem shocked by how persistent and intense he is.

I just can’t meet DS’s physical care needs alone anymore (we also have a 2yo DD and I’m just outsourcing her constantly and missing her childhood) DH works very long hours and we rely on his income. But I can’t ‘swap’ with him and me go out to work because he’s also not well, with two partially slipped discs in his spine. We can limp along together ok looking after DS but generally takes us both to change/care for him especially on the bad days.

Family all say they can’t manage DS, fair enough neither can we. Social services have offered a monthly care package but recruiting anyone willing to do it for the wage isn’t happening and we aren’t holding our breath.

Can we both be home as carers? Would we get UC without them trying to say one of us should be working? We can evidence DS’s quite extreme needs and that neither of us are physically in a condition to meet them alone.

No idea what to do tbh, we never ever considered we would end up in this situation.

I'm going to bet that there will be zero foster carers willing to do this.

The thing is there's
a)what you can do temporarily
Vs
b)what is possible longer term

Is your DH getting treatment for health issues? Are you?
I think longer term , the outcome that's most likely to actually provide enough money will involve at least one of you working part time, unless your health conditions deteriorate to a point where you are eligible for disability benefits yourselves.

1. fight for your funded preschool place. You and your DS are entitled to it, and to high needs block funding to ensure he can access it. We had kids with all sorts of serious disabilities at our preschool, several of whom had 1 to 1.

2. your DS will start school in 10 months. might this give you enough breathing room, together with treatment eg for your health problems, for one of you to manage some work

Herniated discs can be repaired either with physio or via a surgical procedure. Your husband doesn’t need to live with that pain.

@TheShellBeach · Today 20:38

Princessconsuelabananahammock9 ·Today 20:30

Foster care for respite may also be an option.
I'm going to bet that there will be zero foster carers willing to do this.

I do FC respite stays for SEN children- they are in full time care though. I have never been asked to do a respite directly for birth parents. And that’s my point really, if he was in care these things would be provided for him. It’s not fair but IME it’s true x

I've seen someone post on MN that they had this setup so it seems possible. In the practical sense you can certainly be a carer while being disabled/sick yourself. It depends on what your disability effects and what care your child needs. I'm a carer for my 3DC and I'm sick.

Is there a part of UC that deals with complex situations? Here you need to push and not take no for an answer and get put through to the social workers that work for the benefits area. If you don't know to ask for that I don't think anyone actually tells you and you can be left floundering when there's actually a way to get help. Maybe CAB can tell you who to speak to.

Have a look on the National Autistic Society website, there are chatrooms and someone in there might be able to help.
https://www.autism.org.uk/what-we-do/community

There are also a few bits of info about benefits
https://www.autism.org.uk/advice-and-guidance/topics/benefits-and-money/benefits/types-of-benefit

There might be local services near you that can help, or at least chance to meet people in a similar position?
https://www.autism.org.uk/directory

Are there any ASD charities you could contact for advice? When I became a carer for a period (mental health related), the mental health charities were very helpful signposting me towards benefits, how they work, what I could apply for etc.

In theory it would be provided if he were in foster care, the reality is a whole lot different. There is no respite in our area for birth families or for foster families, there simply are no carers and I don't think our area is that unusual. Respite for older children is more possible as there are respite homes but for under 8s it is almost impossible to find.

Got back to social services and tell them you are struggling to recruit PA for your allocated hours and ask them to identify an agency and pay for it directly. Ironically there was little problem with them paying for incredibly expensive specialist agency care from nurses for our child with severe and complex disabilities, but if we wanted to pay them directly it was £12/hour. Be very clear that if they don’t source it for you then there will be substantial health consequences to you that may result in you being unable to safeguard your family’s wellbeing. This is a need, not a want.

Push for an EHCP so you qualify for the short breaks offer. Also look into a local special needs nursery, and enquire from local special needs primary school if they have any summer/weekend/holiday scheme recommendations. You deserve good quality help from people who choose to specialise in looking after children like yours so you can look after your own and your family’s needs.

Sorry to ask but what is your long term plan? I mean your son is going to continue to get bigger and you can’t count on him improving.

It sounds like you are in a tough spot but something needs to change. Can either you or the father address your physical limitations? Both IBS and herniated discs are treatable conditions. Treating either (or both) of your conditions is going to give you more options.

I miss read earlier posts…slipped discs vs. herniated but the question still stands

I receive carers allowance for my son, I also receive PIP and my husband claims the caters element of UC for caring for me (no carers allowance as his salary is too high)

I agree with you as sad as it is this cannot continue

You would be surprised. Would definitely be much rarer than for other children but there are people who are willing to do it. Don’t rule anything out.

They can question it, but if it's clear that the cared for person has very different challenges from those of the person doing the caring, it's perfectly possible to be a carer and get PIP.

I've come across this a few times, eg where one person has MH issues and the other has physical ones.

It may be worth contacting local special needs schools to see if any staff work as enablers during weekends/holidays, after school. I work in a special needs school and many of the staff are self employed as enablers to work with children outside of school.

I have no relevant experience of parenting children with SEN but do know that (on the whole) herniated discs are one of those weird back issues that actually improve with age. The worst point is the weight lifting involved with having young dc. Didn’t believe it when the consultant told dh this but it’s been 12 years since the herniated discs caused him any issues so I now know it’s true. Doesn’t help you right now - but there will most likely be a point where your dh’s condition could well improve. Only thing I can offer is hope and 💐.