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?

(I get DLA for my daughter and it just goes into the family pot of money to spend on whatever we need that month. It's not a separate account or anything so I wouldn't know how to differentiate between what it's spent on and what other money is spent on... my daughter is expensive and now that we get DLA we can more easily meet her needs, but I don't have to and don't account for every penny separately)

Anyway...

I think it's problematic to be enmeshed with inlaws in the best of situations, and this isn't the best of situations. You and your husband have to decide if you're a team or not - and if you're a team, he can't be spending nights there whenever you disagree and he can't be telling his mother information about your lives that isn't his to share. If you aren't a team, that's another problem altogether.

And I'd also like to know why you rent from your inlaws as this doesn't seem like a sustainable plan. As your child gets older these situations are just going to get worse as the gap will get larger and larger.

I absolutely sympathise and empathise with the difficulties facilitating between an ND child and some ignorant / frustrating grandparents. Our parents are all very confused by my daughter's diagnosis and have spent plenty of time telling us it's a parenting failure or we just have to be harder on her or 'back in my day we didn't complain about scratchy clothes, we were just uncomfortable all the time' while I stare at them blankly. It's hard but we are immigrants so only have to deal with it sporadically which helps!

you're welcome. .my son is 19 now and gets higher rate PIP, i remember being where you are and i will gladly roll my sleeves up and deliver some financial truths about parenting ND kids who're disabled by it at any time!

TBH OP even if you did spend it on a trip to Vegas that would be fine as your DS is best cared for by happy relaxed parents.

You and your DH are the experts in your child and your family budget.

I wasnt replying to op. If you must know one of my children is also autistic and would be in the same situation.

What people don't understand is that it takes two professionals assessing a child separately and then coming together in agreement to make a formal diagnosis.

'Do you honestly think you know better than trained professionals?' usually does the trick.

Repeat, repeat, repeat.

We spent DS DLA on a new TV and new tablets and phones when he broke them during a meltdown.
New plates and glasses - he has dyspraxia but we all need plates!
Extra adult ticket if we are going to something that doesn't provide free carers' tickets.
We do not have such a problem with food but I know many families who have an extra freezer or extra large fridge to keep their DCs' safe foods in stock.
Some who have to do renovation after the ND child kicked through a wall. We've had to replace 4 windows (though to be fair to DS one was unusually badly fitted and he closed an internal door with only slightly more than usual force). Pre-emptively replaced the French doors after the first few incidents so they would be less fragile.

@JustSawJohnny

You’d hope! The NHS completed ballsed up DS’s diagnosis, and I do not trust ‘professionals’ at the council. Sadly the school seem to be a fan of ‘off rolling’ too. And happy to take extra money from the council but not spend it on DS’s provision.

I feel for you OP. My mother isn't quite so judgy but for years she refused to believe that my DC was anything but typical even though the school (not us) applied for and got an EHCP for her the age of 7. She also once told me that my DC's speech wasn't delayed, despite my DC not saying her first word till almost three and only really becoming fully conversational from ages 10-12. Absolutely bizarre and I've never understood it! Twilight zone type stuff.

I'd have thought that a fridge freezer is an essential thing to have. It's not like they spent the money on fags and booze. Assume the skip was to get rid of the old one too! When I got the first child maintenance payment from my ex I bought a stair gate and a four slice toaster. Next one is going on a fridge because the one I have is second hand and leaking.

I sympathise with the dismissal from in-laws, OP. My DC 8&5 have signs of ND (I believe 8yo has was previously known as aspergers and 5yo has pathological demand avoindance). 8yo has been on the assessment waiting list for 32 months (which is apparently the limit, lollllll.)

They can be very hard work, and have been since babies. MIL and FIL are completely dismissive of any mention of ND. We get it all - "why do you need to label them, they are just spirited, when (BIL) was a child, he was demanding also" (he is now in mid-30's and still lives at home). The worst is "well they seem fine when they are with me" (For 4 afternoons a year? Being fed sweets/every whim catered to?)

Whenever we tell them about challenging times (getting excluded from school, meltdowns, etc), they suggest parenting techniques or make excuses. It drives me absolutely mental.

I have learnt not to talk to them about anything to do with DC's behaviour. And if they offer their advice or opinions, I take the 'let them' approach. I mmmm and aaaah and grey rock. But we have no support system (my parents are deceased) and it is so hard. I don't know why some boomers are absolutely incapable of accepting it is harder for some people than it was for them, and that ND is real.

I cant believe people are up in arms about a fridge that was bought with money that wasn't there's, and spent on a much needed appliance.
Would it have been better for the family including the child to suffer till payday? Or have all the food be wasted because it had gone off and the family having to spend extra money on food everyday because they have nowhere to store perishables.
Anyone would think they had bought a jacuzzi🙄

Oh give over, it’s a fridge freezer not a brand new BMW.

OP explained that the drawers were all broken and sharp, not ideal with a 3 year old who’ll be into everything and may not understand danger/instructions to leave well alone. There’s also a difference in the tech in newer models - our fridge freezer is bigger inside than same size older versions which matters if you need to store food up for a child with ARFID.

Families shouldn’t be forced to live in poverty with broken appliances because their disabled child costs more to care for.

I think she's very much in the wrong about your dc, but I think it's strange that your dh gets chucked out when you argue. That's not normal and your MIL probably thinks the same. Just end it if you're going to do this rather than throwing him out of his own home if you disagree. Would you like to be punished for disagreeing by being thrown out of your home?

Maybe the fridge freezer makes OP able to batch cook the 5 meals that kiddo will actually eat?

Maybe kiddo has been really dysregulated and broken the fridge drawers?

Maybe kiddo likes the sensory experience of swinging from the fridge door and the hinges are buggered?

Maybe, as suggested numerous times, OP has been covering all of the additional costs of his disability and the impact on the family and now has eaten through all of their savings?

@Yukoayh in your position I would have one last try and having a calm conversation with ILs and if nothing changes move out and put distance between you all. It may be possible to rebuild a different relationship with less entanglement.

Ok, ours is currently 8yo bosch (bought when DS was tiny as the previous bosch decided it wanted a repair that cost more than a new machine and with a sicky baby, no chance we could wait a week either). It's fine AFAIK.
Dryer was bought when we had renovations done, so 11 years ago although husband competently repaired whichever thing it was that tried to burn out/ set on fire about 3 years ago. Fridge/freezer also same age

Just a thought, maybe shes pissed off that they’ve spent all that money on the house you rent & her child still gets chucked out and has to stay at their house? 😂 Maybe thats what is grating on her.

Plus at £280, it's really not an all singing all dancing one but a needed and will do the job, to keep food safely for the family.

Do you know that you're entitled to extra uc because of the DLA?

I think DH was foolhardy to tell MIL that DLA went on a new fridge, that'd have been like a red rag to a bull. I completely understand the DLA doesn't cover anywhere near his needs but speaking like it's going in the general family pot will rub people the wrong way.

I have a 3 year old who has high rate care with Autism. People's general opinion changed when DS got his diagnosis.
I know that there are people who don't understand, and if they lack the capacity to understand then I guess that's how they are and can't be changed but I'd probably contact her and say something like
"I know you think that DS is poorly parented, and needs better boundaries, and maybe he isn't parented according to what he needs because until recently I've been parenting him like all the other parents of kids the same age.
The truth is that DS is developing differently to the typical child. I am parenting him to the best of my ability. I parent with the intent that he will grow up feeling understood, loved, and a good person. I know that a part of that is his actions need to fall within what is acceptable in public but that isn't always possible, and not everyone is able to show acceptance so I am really hoping that we, as his family who love him can show some understanding and support him when he is struggling- because the outside world are going to be unkind at times.
I would love your support whilst we are navigating the system to ensure diagnosis and correct ways of ensuring he grows up to be a confident, happy, well adjusted, well regulated adult.
Now we have DLA in place, that will of course go on things that will help him to overcome some of his difficulties.

I know right now, this all seems very different to how things were, even a few years ago, but please trust that we are all doing our best. I would love to keep a strong relationship with you, where I can call on you for help, and ask advice but I have felt that you haven't been understanding of DS additional needs, and I will admit it has meant I've pulled away. I don't know how to navigate having a child who isn't responding to typical parenting advice. I don't know how to navigate feeling that you think we are parenting him to make him this way, I don't know how to navigate a system that's broken, where a diagnosis should change access to support, but even when he gets that, I will need to fight for everything he needs.

Sorry, its long! But I think she needs to understand how damaging this is for DS, and also to you.

I'm not even with my husband anymore, but his mother is my absolute biggest cheerleader. She came on holiday with me and the youngest 2 a few months ago.
She's not especially useful in practical terms, but she is always there saying "I don't know how you manage! I've known kids all my life! But not one like him. Let me make you a cup of tea!" Or offers to go to appointments with us. Even the once we went on holiday together, such a nice time we had- she cried that DS kicked off and she didn't know how to help.... whilst it might not sound like it was helpful, the fact that it's happened quite often and I know how to deal with it made me feel quite skilled!

You need some support. Are you attending SEND clubs? Are you part of a parent support hub?

Oh yes OP, if you haven't already, make sure to inform UC that your child receives high rate care and the date your claim started. Request for it to go to a decision maker and they will back pay it to the date your claim started.

I really think this is such an under-discussed topic. As parents, of course we move mountains to care for our children, but the financial impact is beyond wild. I have only managed to work very part time for the last 11 years - and only then from home. This has meant I've had to stay with the same employer - in the same role, with very little in the way of pay rises - because who else is going to hire a mum who has to flee at a moment's notice because their child has been rushed to hospital, or has to come home because school (yes, it is a SEN school) are struggling with behaviours. Who will hire someone who has a child who can never attend a breakfast or after-school club - or attend any kind of regular holiday club - who needs specialist 2 to 1 support instead of a regular babysitter. It means that you accept jobs that are paid much less than your earning potential - and once your child enters a SEN school, don't even dream about trying to move house to a cheaper area - as SEN school places are like hen's teeth and the upheaval for a child with rigid routines is almost unbearable to consider. The financial impact isn't just the fact that bills are much higher (obsessive tap runner in the house here), or that specialist foods cost more, it is the unseen impact: there is a financial glass wall for many special needs parents with regards to earnings and life decisions that go far beyond simple daily costs.

One thing I'd say to the OP, is that if you do want to move eventually - do it now. Once you have a child with SEN, so many of your pre-parenting decisions become set in stone and financially, I've been stuck in a time-warp. My son was born in one of the most expensive counties in the UK and while it was perfect for us for a few years with regard to my husband's job - and we got our little one settled into a great Special School - we could have really done with moving somewhere cheaper much earlier. Now he is so rigid in his routines that a move of house would be traumatic, and finding a new special school place in another county would be extremely lengthy and difficult - potentially being out of school for a long period of time during the transition would likely lead to me having to give up my job. We are stuck. We cannot afford to buy property where we are, and we cannot logistically move to somewhere cheaper - so we are unable to get on the property ladder in a way that other, more mobile/flexible families could.

I don't regret any of these decisions for a moment - all of them have been made to ensure that my son's daily life is safe, consistent and happy and that means more than any amount of cash. But my earning potential is on the floor, I pray every week that my job is safe because I am functionally unemployable by anyone other than my current lovely employer - and every day expenses seem to go up. And then people pop along on the internet and tell other SEN mums that they are misusing funds when they buy a fridge.

Sorry for the rant - I've clearly been holding onto some things - who knew! But please don't think you are alone OP - many of us have travelled your road (difficult MIL included). There are a bunch of us out here ready to give any advice and support we can :-).

You need your own place and to be less involved with inlaws. I suspected that my DS had ASD when he was 2.5 but MIL told me it was me, I was the problem as I couldn't parent properly. Even now she refuses to accept his diagnosis and makes comments like "he's just naughty, you're not strict enough, there's nothing wrong with him, funny how he's fine in school, we are all on the spectrum" and SIL constantly tells us her kid has ASD ( not diagnosed or showing any signs) - she has just self diagnosed her kid because she is an attention seekers. Some families like drama. I dont. I haven't spoken to inlaws for 2 years.

You think a new fridge freezer is a luxury in the UK?
Just as well you don’t post much @Idontpostmuch

Well said. You've got that exactly right.

It does sound as if your in-laws are too involved in your business, so to speak. Renting your home from them contributes to this but I can see why it’s a good option given how difficult the rental market is nowadays, it gives you stability.

They shouldn’t be involved in your arguments though. Your DH running to them every time you have a row isn’t healthy. Barring something serious like abusive behavior or DV, it’s better if couples work things out together and don’t run to their parents. Next time you have a row, perhaps your DH could go out to clear his head but then return to sort things out. That’s what my DH and I have done in over 20 years together, our parents have no idea when we have a row.

Your MIL is likely having a hard time accepting that your DS is ND. She’ll have to eventually if/when he receives a formal diagnosis. It’s frustrating @Yukoayh, but hang in there, they don’t sound like bad people given that they’re generally supportive.

My son receives DLA and we used one of his payments to buy a chest freezer. He is lactose intolerant and alergic to dustmites.
We use the freezer to store his pillow and teddy during the day as advised by the paediatrician and to store the vegan pizza and ice cream he eats. Should I not have used his money to buy a freezer for him?

I also used his DLA to fix the washing machine last year so I could continue washing his soiled bedding and clothing rather than waiting until I got paid. Was that wrong?

I also use his DLA to buy his bus ticket to school to help foster his independence. Again, should I not use his DLA for that.

What, in your expert opinion, should I use his DLA for?