ND child, mother in laws opinions

Something tells me that an upgrade to a suite in a rather beautiful hotel in Campania would not pass the DLA "sniff test" that the PP seems to be advocating. My point was that, even if I spent the DLA on caviar and champagne on some spurious basis, DH and I would still be about £25k down from spending our own - net! - funds to plug the honking great gaps in the NHS and LA provision.

Dla is to be spent however the parent wishes

Honestly, this makes me so sad. So, let me pose you our situation & see if you think we're in the wrong.

Both have always worked full-time, standard family with mortgage, 2 kids, have never had any benefits. DS3 comes along 13 years ago & it's very clear that he's different from a young age. Epilepsy started at age 3 & everything changed enormously. It is cyclical & during a cycle he can have 40 seizures a day . These cycles are usually months apart, but pretty awful when they come.

Age 4 adhd diagnosis, age 8 autism diagnosis. Epilepsy is uncontrolled despite being on a cocktail of meds (we're in a much better place the last 18 months with a new drug). We're told the Audhd comes from the site of the brain damage causing the Epilepsy. Life is tough, very tough. I go down to 4 days a week (teaching) as he needs me so much- before & after nursery & school as he needs to decompress. It would be great to not work, but that's not possible so if I'm off start of the week transitions are easier.

Fast forward to the massive process of applying for alternative placement for secondary school (Scotland so a different system). After a year of battling & legal process he's given a place in an ASN unit with a mainstream secondary (exactly what he needs). During this process the lawyer asks what Disability payments we have. He's astounded when we say nothing as we've never thought we would qualify (we work, have a mortgage) & noone has ever told us we might.

Apply with doctor/ CAMHS reports & get a reward of £600 a month. Absolutely bowled over. We're told we could have got this from age 3. It now means I can drop to 3 days a week & buy a newer car to allow me to drive him to & from school (2 hrs a day in the car). Appointments can be arranged on my days off. The time I have when he's at school means I can reset & breathe

Is that okay for you that I use this money to work less, or will I too be accused of playing the system? He needs me. And OP's son needs them to not be stressed by a broken fridge.

I loved this comment too:

It’s hardly akin to spending the DLA money on blackjack and hookers

I currently use every penny of my child's DLA on SEN tutoring (and I pay the excess as DLA doesn't even cover it fully) but before this it went into the family pot and all DC's expenses came out as and when required. The expenses of having a disabled child didn't always fit into a neat bracket.

The cabs to / from appointments, the food and drink required for their medical diet, the additional clothes / continence related paraphernalia, replacing a particular (and often not cheap) toy or equipment etc would all add up and were covered out of the household pot so sometimes DLA payments would go towards bigger things?

Please don't make such scathing judgements.

All the examples you’ve given relate to additional expenses for your autistic child?!

Why on earth did your DH tell them about the DLA money, then? This current falling out is largely his fault. He needs to stop sharing so much of your personal lives with his parents.

Maybe , now that OP has DLA to contribute towards their child’s needs - that have been present since long before the DLA was awarded - they can use their own money to purchase a fridge and a skip ?

Maybe , their child eats food that is stored in the fridge and has a specific snack that they would struggle without and so OP realises they would struggle without a fridge and that therefore is a need .

Maybe, their child needs space so they have used the DLA for a skip to benefit their child.

Maybe , just maybe , DLA sometimes needs to spent on things other than sensory toys and ear defenders ?!

Thankyou so much @Knittedfairies2
Great advice.

But unfortunately, you've probably just stirred the hornets nest even more 🤔 😁

It's unfathomable I know, but sometimes posters get jealous of disabilities because of the benefits...

Oooh you'd be jolly cross with us then. We get middle rate care for autistic DS9, and this year I blew the equivalent of a full year's allowance on upgrading our room to a suite on our annual holiday. (DS gets overwhelmed by travel and also in unfamiliar surroundings - he's improving, but I wanted him to have a "safe space" that he would enjoy spending time in). I have also spent DLA on stockpiling Pasta Evangelists' carbonara sauce (the only thing DS would eat for almost a year, at £5 a pop) and on seam free and silk clothing (for sensory reasons).

I don't feel any remorse, having also dropped £30k on private diagnostics and therapies for DS, because the NHS was slow, incompetent and clueless. By my reckoning, the DLA should break even with our previous outgoings around DS' 16th birthday, assuming we don't have to go private for anything else.

The OP may well have been spending the money on her child, usually the parents are already spending money on the child before they get the DLA (I'm currently waiting to hear about DS's) maybe once OP got the DLA they could spend that money on their child and now some of their money from work can go on essentials like working fridges.

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.

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."

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.

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.

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

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!

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.

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

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.

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.

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)

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.

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

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