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?

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.

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.

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...

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 ?!

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.

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

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.

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

Dla is to be spent however the parent wishes

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.

My son's DLA goes on monthly food because with his ASD I can't work.

OP mentions being uncertain about her son starting school..which may mean a parent being available when otherwise they would have started work…you are aware of the massive closures of special schools and the lack of provision in mainstream schools? Having to seek financial help is completely to be expected in these circumstances (when you are providing care and not working)…wait until you hear about the changes to school transport being proposed across the country…the costs of lack of services have to appear somewhere…they appear in people applying for benefits ..to SURVIVE

You will find that most parents of disabled children use DLA for general household expenses. Our DLA goes on mortgage and food. It may even have contributed to a dishwasher and a flat screen TV. After all, I had to reduce my working hours drastically in order to be at home much more (combination of lack of wrap around childcare/lack of holiday childcare, and at some point, non school place for almost a year). The loss of income is massive and DLA plugs only a small hole of that but DLA enables us to keep a roof over our heads and food on the table. No money spent on therapy or broken item. Shock, horror, I know.

They've been spending their own resources on all the necessary 'extras' for now. High level DLA is hard to get, so their son must need it. That money can now go towards their son, freeing up their earned income for other family necessities, like the fridge

FFS

lets assume the DLA is covering the cost of support for DS so thats freed up money for other things.

• throwing your DH out after having arguments isn't ok and is really dysfunctional. if your DH said you need to leave when you feel it out it would be abusive. that isn't a way to work through issues and of course after it happens more than once it would look funny to MIL

• if your PILs are doing you a favour on rent they're going to notice you are flush. DH told him so thats on him, he knew how it was going to go.

• Some people understand ND/disabled children and all it requires and some learn on the job. you have experienced DS since he was smalll daily. now hes older and its more noticeable hopefully they will understand

• If they don't understand keep them at arms length. But generally approach it in good faith and give them the opportunity to learn and adapt to DSs needs. there love and support you have for DS is good.

I know, but it is almost as if this thread has been posted to attract these sorts of comments and encourage pile ons.

I know people who have had to give up work and will likely spend the rest of their lives funding their child's life as they will never be able to work or move out or be independent. If we just told the government wewere not going to do it anymore once they reach adulthood (which legally we can), it would cost a lot more to the government thsn DLA. Carers save the government an equivalent of another NHS budget ffs. They are basically carers for the rest of their lives. My partner isnt working right now because my child needs night care, has lots of appointments and has a heap of admin to deal with just to put things in place for my son.

I really wish people wouldn't comment on situations they have no idea about. It's like me telling a veteran with PTSD to pull his socks up and get on with it when I've never set foot in a war zone. It's so bloody ignorant.

My child was diagnosed with autism at about the same age as the OP's little boy. He's 12 now, and has always been a remarkably easy child to parent in almost every way - he is gentle, funny, clever and kind. However, he cannot cross a road independently or eat dinner at the same table as other people because it's too overwhelming. He found his very kind, inclusive mainstream primary school so overwhelming that my husband has given up his professional career in order to work at jobs that fit within school hours, and this is INCREDIBLY common for parents of a child with autism (and probably other disabilities, but I'm not as well connected with those parents).

Parenting our child in a way that meets his needs costs us at least £50k per year in lost income. This year, we've spent £15k on medical and lawyers' bills to get him into a specialist secondary school. Fortunately, I am a high earner but we are entitled to DLA and we take it, because £400 per month is laughable for many families in our position.

Sorry but I think you have conflated your personal situation with what I have said. And just to be crystal clear I have immediate family that this could have been written about (seizures and everything).

I think it’s sad that someone can’t have an opinion on boundaries as I said there was real value in spending on some things in the same way I wish more money was spent at times without it being a you don’t understand.

No I do. Intimately and I stand by what I said.

What did your DH do that he had to go and sleep there? I can’t imagine any situation where I would chuck out my DH for an argument - and to sleep at his mum’s of all places?! If my DH turned up to sleep at his parents they would be all up in our business too!

If this has happened more than once and you live in their property, no wonder there are blurred boundaries.

OP, there's a lot of ableist wittering on this thread so from one SN mom to another Ill say this. Firstly, Spend your DLA money on whatever the fuck you need for your DS or to make your own lives easier. Secondly, you are going to have to harden yourself to people like your MIL as she won't be the only one down the line who passes comment on stuff they know fuck all about. Don't give her any further information about Ds, just practice the 'smile and nod' while deep in the knowledge that she's a twat.
Sending solidarity ✊

OP clarifies somewhere that it was £240 and replaced a dangerous broken one. Doesn’t sound much of a luxury to me - more like a bargain on a necessary item.
There are many needs for a fridge freezer when you have a child with higher care needs. Especially one with a restricted diet. FF enables stocking up on their safe foods. It enables batch cooking - even if not foods for the child - which in turn frees up time to focus on the child’s needs as well as freeing up finances for things that will make life easier. Disabilities have many hidden costs that many wouldn’t see, both financially and in terms of time.
Anything that could make OP’s life easier benefits the child and is the purpose of the payment.

I would be more annoyed at your DH for telling her. We also receive DLA for our autistic child and don’t tell anybody (other than my own parents who aren’t judgey and won’t discuss with others) because it’s none of their business, and I’ve seen enough threads on MN to know how people misunderstand it.

As for attitudes to ND, it’s tricky. My in-laws are very old-fashioned and also weren’t very onboard with DS’s autism diagnosis. I think some of it is simply their age and own experiences of school/education/raising children. MIL also can’t understand why I wanted a special school place for DS- she can’t shift the idea that special schools are these awful institutions where children they’ve given up on are shoved. I’ve tried to explain a million times that nowadays you actually have to fight for a special setting, and they are more expensive with better resources and smaller classes etc. But she doesn’t listen.

I think a PP’s comment about ND running in families is also a good point. MIL would say things like ‘But DH name always used to flap his hands/repeat words over and over/didn’t speak until he was 2 and there’s nothing wrong with him’ when of course DH could likely be ND as well, he just didn’t have as much developmental delay or challenges as our son.

@Hiptothisjive Would it have made a difference if the OPs DH had characterised it differently?

"Thank goodness all the costs of getting to appointments, extra utilities, specific food & specialist clubs we've been paying for for the last 2 years from our earnings are now being covered, it's meant we've had some income left from our earnings to replace the fridge at last."

Because the facts are no different, it's only the description.

Without knowing the specific of the OP’s DS I can’t answer that but I can answer about a friends autistic son at the same age. He was incredibly sensitive around food and would only eat specific brands of specific foods, so there was an additional cost of having to buy branded products regardless of cost or if they were on offer. No shopping around. He was noise sensitive so wore ear defenders which invariably got broken during meltdowns which were frequent when he was young. He broke numerous household items, tvs etc during meltdowns. He wasn’t safe to walk along the street so she would have to pay for premium rate parking in town. He has multiple hospital appointments due to other medical things he had going on which cost both in travel, parking and loss of earnings. He had speech therapy which alone took up a big chunk of his disability benefits. She had to buy a disabled pushchair for him because he would bolt.
In short there are a lot of hidden costs which you might not think about but are very costly.

@Namechangerage Completely agree, the OP doesn’t have the right to chuck him out of his home when they row, I’ve never done that to DH nor vice versa. One of us has stomped off in a grump for a while, but then we returned…because we’re not going to share our business with family or friends and we’re both too stingy to pay for a hotel! 😂

Obviously I’m talking about ordinary disagreements, not abusive or violent behavior, that should def. be shared.