ND child, mother in laws opinions

[Yukoayh]

DH and I have been married for 12 years, we have two kids 7 and 3. The 3yo is undiagnosed but quite clearly autistic (lots of issues, hard child to parent etc) he is currently on the never ending list for an assessment.

We both work for the NHS on low bands so we receive Uc top up every month. We also rent our house from my in laws.

I’ve always gotten on well with said in laws, they are the type that can never do enough for you, always go overboard at christmas and would help us out at the drop of a hat.

However my relationship with them has changed since having DS2. From the very start he was a hard baby and this put a lot of strain on my marriage. DH spend a few nights in the doghouse at theirs. Every time this happened MIL would give me the silent treatment for a few weeks (usually she texts regularly) even if it was my DH in the wrong… which it always was.

Also DS2 was always developmentally not quite where he should be, however inlaws always refused to acknowledge/believe this. They see the behaviour and you can see the judgy look on MIL face and she has even said “hes just a naughty child” we decided about a year ago to stop speaking to them about his development / asd pathway because their comments were not helpful.

Now DS2 is almost 4 we are starting to see even more ND in him and starting to think about how school will look, what extra support he might need etc, so with support of his nursery, childminder and HV I applied for DLA. To my surprise we got it, and we got high rate care. We agreed not to tell in laws as they won’t understand.

When I was out on Thursday my MIL came round to see my DH. he admitted they’ve now fallen out because he showed her we had brought a new fridge freezer and she asked “why have you got so much money” (we got a new fridge freezer and we hired a skip 🤣) to which -for some reason- he told her about the DLA.
She went mad questioning him “Why do you have to label him” “he needs stricter boundaries” etc and then she asked how does a new fridge help our son…

Apparently my husband held his own but honestly I am livid.
I now feel incredibly uncomfortable living in their house, or having anything to do with them quite honestly. AIBU to consider moving out because of this?

Dla is for the disabled childs needs like therapy, or replacing items they have broken etc...

Where did you get this info? Can't find it anywhere. Can you link please?

I have a question that perhaps shouldn’t be asked on a public forum (but I bet a lot of parents with similar children on the never ending list for assessment would like to know) and that is on what basis DLA was awarded at the higher rate.
Looking at the award criteria for DLA it’s hard to imagine how a child described as developmentally ‘not quite’ where he should be and that granny thinks is just a naughty child would qualify for this.
Apologies for missing the point of OP’s post. I’ve not voted but this wouldn’t be a moving out issue for me

It is on care needs. So HRC is generally awarded when the child needs significant supervision and care, above the needs of a typically-developing child, both day and night. Without night-time needs, HRC is not awarded (I believe).

Yes, I agree. Broken record ....
😊

My children are autistic, ADHD and have severe learning disabilities, one still non verbal and doubly incontinent. Both only ever been to special schools. When they were 3 I still had people saying they were just naughty, it was my parenting and they just needed a smack...

The DLA is supposed to cover child’s additional expenses - not to buy appliances for the house or hire skips.

Didn’t need your life story, ‘my expert opinion’ 🤣🤣🤣

OP didn't need your judgement on what she spends her DC DLA on yet here you are.....

We’re constantly told about how expensive it is to be disabled and that’s why the money is needed. But how accurate is that if half of recipients spend it on non disability related items?

guess you and the other poster haven't bothered to RTFT.

I like how Mumsnet have introduced the "👍", "❤️" and "👏" emoji. They really need to add a 🙄 or 🖕🏻 for those ridiculous posts

Well she wrote an entire thread, I didn’t need your opinion, yet here you are…

DLA is to cover the extra costs of raising a disabled child.

At no point does it state it must be spent ON the child.

It's to cover everything that costs extra because of the disabled childs care.. and yes, that includes replacing appliances, furniture, cars..etc that wear out sooner because of the extra use/strain put on them by the care/use due to the childs disabilities.

So you deem household appliances to be non-disability related items?

Awesome, I'll tell DS that I cannot wash his soiled bedding because the washing machine is not there to help with his disability (or that his teddy can no longer go in the freezer)

Op, this thread is likely to be hijacked by benefits bashers. You and I both know that when you're not having to find huge amounts of additional money from the household budget to pay for expenditure directly related to your child's disability, it means there is more money in the household pot for other necessities, such as fridge freezers. I suspect this is what your dh meant, but the phrasing here is unhelpful because it invites the predictable responses from people who have no direct experience of disability, nor the financial impact it has on families.

I think the ignorance around your child's ND is more about the generational gap in understanding it. My own parents made it their business to learn, understand and support. But then, they're pretty open minded people. If your mil doesn't believe she needs educating, then I think you're right to keep it to yourselves. Parenting a ND child is hard enough with the judgement of others add in for good measure. What I'm saying is, you need to find your thicker skin, quickly, because the ignorant assumptions and judgements are unlikely to ever be limited to your mil.

But how do you establish what is an addtional expense for the child only?

My experience is adults not children but the expenses are endless -
Carer can't work, or only work limited hours due to their caring commitments
Heating on all the flipping time at full blast
Fridge full of specific foods
Extra electricity and water bills as the washing machine is on 24/7
White goods get worn out more quickly because they are used so much
You want to go on holiday -great, everyone going has to pay more as you can only go to an accessible venue

In a family setting it can be difficult to separate out what is specific to the disabled person and what is also used by everyone else.

Unfortunately OP @Whatafustercluck is right. Rausing an ND child is hard enough. Convincing everyone that you are doing the best for your child and spending "their" money in their best interest is like trying to boil the Ocean. Damn near impossible and a waste of time/energy.
You need to thicken your skin and maybe treat your in-laws as related landlords. They only need to know what they need to know, and don't get the priviledge of knowing more

A decent working fridge f benefits the whole family. We once had to emergency for a period between moves and had a tiny fridge with just an icebox and I had to run out to the shops so frequently with a newborn and three older children to keep all the meals going.
Also. If they needed a skip, there was clearly a lot of junk/clutter/building materials that needed to go. There were probably safety concerns.

OP. teach your DH to memorize the following sentances and use them.

1. Your not the boss of me now( he can sing that one)
2. I'm not answering that question
3. That is for me and OP to sort out and we are doing that.
4. I am taking advice from the experts.
5. I hear what you are saying. ( and change subject)
6. I don't know (Shrug)

His mum does not have the right to demand information about your finances or your joint decisions and then tell you what to do. She is not the elected authority.

You are both doing your best. Talking to experts and helping your son. Give her some websites to read up on the condition if she keeps asking, but tell her you are doing everything you can and are not prepared to discuss it any further because all this pressure is upsetting at a time when you are already upset that your little one is going through this.

I know OP has already clarified that FF was broken and dangerous to child. But it's also entirely possible that it was 20+ years old (particularly in a rental furnished by ILs, with likely handmedown white goods.

In which case it's entirely possible that switching to a new A rated fridge freezer could save over £200 a year in energy use.

Energy they will already have been covering from their pre-DLA family income. Along with the specific additional cost foods which are the only one the child will eat (think only petit-filous, not own brand; only warburtons medium white-sliced not any old loaf; only innocent juice drink in flavour X etc etc). Other brands are available, and I'm sure OP has enough on her plate to not need to justify exactly which split of their weekly shopping bill costs more, or how many additional washes she does a week, or how long she's spent driving to multiple supermarkets to find the right brand of white bread when she found it was sold out - and wished for the love of god that she'd had more freezer space to keep an extra loaf in so this hadn't happened!

Anyone arguing that a fridge freezer bought out of family earnings they now have which can be spent on the kind of thing family earnings should be available for, is in some way excessive & a waste of taxpayers funds because if was the first time in 3 years they could afford if & it was characterised as 'from' DLA payments, because the DLA payments are now covering some of their excess family living costs due to the additional cost of care for their child.....is wildly missing the reality here!

PS OP, if your life would be less stressful with any other landlord, go for it - but it may not necessarily give you better long-term security. But as others have said, if you're going to do it, the time is now, before DC is in the school system. Good luck navigating it all, but it sounds like you're doing an AMAZING job advocating for your youngest. I hope MIL can stop blowing so hot & cold and get on board with being a reliable member if DGCs team!

You know what we never claimed for DLA and PIP for our child as we felt that we had enough. But also you know what, I have had a very stalled career because no one else can look after her, so wrap around care when she was in mainstream was hard, Then she went to special school and there is no wrap around care. Also we don't get transport so we have to take her or pay £££ for a taxi, thus limited further what hours I can actually work.

If I didn't have a disabled child our family income would be infinitely more than it is.

We paid for; SALT, OT, Diagnosis, school transport, educational psychologist.
We shouldn't have to pay for this, but public services are on their knees so we do,so she can get the help she needs.

So - its a double whammy - we earn less as a family due to time needed to care and we spend more with the disability.

Does it make sense now why we get benefits?

FML people are so naive as to the reality of disability and the reality of public services.

Unless you have lived this back the fuck off with your opinions - believe me you have no idea. And nor do Nigel Farage, Kemi Badenock or any of the other politicians who use disabled people as a reason why there's no money.

Spoiler - it's not due to disabled people.

What people don't realise is that you have been living with higher day to day expenses due to the Arfid & other sensory aspects. These are now part of where you allocate the money you already had because you needed to meet to your childs needs. This means that other things have not been replaced when they perhaps otherwise would have been, but most people just think Oh you used DLA for a new fridge because ot is easiest to think badly of people & not have to think of the difficulties they actually have to live with on a day to day basis.
My AuDHD young adult has Arfid, we now have a whole separate fridge.
One set of GP's just dont seem to understand the day to day reality of our lives though & it is an ongoing issue. They don't really want to hear about the fact that an item was in the wrong fridge so your child didn't drink for 6 hrs or they opened the family fridge but this meant they vomited & then couldn't eat until really like late - I find I swing between being totally noncommittal in my responses or brutal honesty, none makes any difference, sometimes one just makes me feel better. Re finances, we saved for it is the best simplest answer that gives the least info

Also to the OP - we had this with my MIL. Would tell me she had taught children with autism and that was not our daughter. That she was badly behaved. It was awful.

My daughter is a teenager now and it is clear that she has LD's and autism - she can no longer deny it. But the lack of support and the shaming she tried to do will stay with me.

Listen to those that get it and will help. Anyone with something to say that doesn't help - pop it in a metaphorical box and put it out with the recycling.

To posters who think disability benefits are being wrongly spent:

DWP do not specify in ANY WAY, how the benefit should be spent.

If you disagree with that, contact your MP.

For a start, they're not tax payers' funds any more than the money in your bank is your employer's funds. Or your pension is my funds.

Still, now they have benefits to help with the kid, they can spend the money they earn on a fridge, no?

How, may I ask, is that wasting tax payers' funds? Your attitude seems to be "got a kid that needs extra support? Fine. But you can't have both a ND kid and a fridge. Make up your mind."

This might help somebody:
https://www.familyfund.org.uk/grants/apply-for-a-grant/

The Family Fund was very helpful when my son was much younger; they paid for a washing machine and a tumble drier, but can help with many other things.