ND child, mother in laws opinions

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'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 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.

@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.

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.

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.

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

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.

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!

(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!

DD1 gets Universal Credit. Right now, I'm not using it for living expenses. I'm saving it for a power assist device for her wheelchair, because although wheelchair services provided the wheelchair, they won't do anything about the fact that she can't self-propel it. They have told me that really she needs a powerchair, but the NHS will only supply one if she needs hoisting. So we'll save her UC and get a power assist device.

@Yukoayh

You both work for the NHS doing - I expect - a vital job but underpaid. With regards DLA - I think your DH has explained this poorly. Yes you may now be able to afford a new fridge (this is a family need, also for your DS) - but you do not know what your future holds. My DS’s school and the council have been woefully inadequate in terms of delays with EHCP’s, LA agreeing with a school to refuse placement, I’m pretty sure school advised their breakfast club provider not to give DS a placement - which led to me changing my career. I’m on a significantly lower wage now - but I can also claim carer allowance with DLA. This mean I can put DS’s needs first and do school drop off/pick up. I also do a great deal of extra provision outside of school (which my son’s school are supposed to do but can’t/wont) and use DLA for private speech therapy. I’ve also had to become an expert on SEND law, as the LA (and school) frequently break the law and I need to fight. This has taken a lot of time and persistence.

Your in laws are using the wrong term ‘naughty’ and I think - gently - educating them may help.

However I do agree with them that clear boundaries are important and confident, assertive parenting is needed with a child with behaviour needs. I’d watch Supernanny - I think she gets it right.

fuel to get kids to appointments + upkeep as more wear/tear on the car because they don't/can't walk far.
specialist/particular food.
clothes & shoes bought at a higher replacement rate because they chew/pick/destroy/ruin/walk through them at a higher rate, or lose stuff at nursery/school.
bedding because they thread pick, or wet the bed, or refuse to sleep in it if its slightly damp, so it needs changing more often
the extra electric to run the laundry/dryer because of the quicker overturn of the laundry
extra utility cost because they're sensitive to the cold, so the heating needs to be on more
extra water, because they insist on showering 2 times daily rather than having a bath
extra electric to run night lights & sensory equipment

Thats just a quick 'off the top of my head' list of the added cost of my DS's disabilities. Would you like me to continue? I have more.

I don’t understand why anyone is wasting their energy explaining why a Fridge Freezer or a skip is a necessity because it’s bloody obvious and I don’t even have any experience with ND. The OP has not booked a trip to Vegas FFS.

The only red flag I see in the OP is the part where you state that the arguments are always your husband’s fault.

DD1 was 2 years 9 months when I first applied for DLA. Until that point I had been told I was neurotic and paranoid, 'reading the text books' and forgetting that all children develop differently.

When I got her award of HRC, I remember being overwhelmed with emotions. I couldn't believe we'd been awarded without a fight, I couldn't believe we'd been awarded HRC without a fight, then it dawned on me that she must be 'bad' if they had worked it out from our form and didn't make us fight.

They were right, and so was I. DD1 has significant disability and still can't be left at home alone, or go out alone, at almost 20.

@Yukoayh a fridge freezer is a perfectly reasonable and sensible use of DLA.

Wrong.

We spent ours on one.. know why? Because DS has ARFID, which meant buying his 'safe foods' which needed to be refridgerated/frozen, in bulk, but the fridge freezer we had was already full of the rest of the households food.. so we bought a second one just for his food/drink.

Keep your damn ignorant ablism to yourself.

Some of the posts criticising this family about spending money on a fridge freezer don’t really understand money and what DLA is for

I spend approximately £150 per month just on my autism and ADHD so I can function, hold down a job etc Could spend more as I would like therapy to help with my neurodiversity. If I got £150 per month through DLA that would be solely spent on my ND. That means I would have an extra £150 that could be spent on other things.

If I was Neurotypical then I wouldnt get DLA but I wouldnt have to spend £150 per month just to be able to put one foot in front of the other and be able to function.
The fact that I forgot my meds last week and after a single day working at a new place I was unbooked from all the shifts I had been confirmed for there

Your DH is the go between with the gossip.
Definitely look into finding a different home.
Has he no filter? Otoh why is he leaving after an argument? Who's choice is that?

Please don't feel you have to justify yourself.

Why is the adult in your life being told to leave the family home and ho and stay with his parents for a period of time. Sit down and discuss the issues then move forward. You both adults.

She probably doesn't believe in autism or she is in denial. It sounds as though they stopped talking to her about concerns with his development too and I imagine she isn't around at night much, if at all.

As the parent of a child with significant learning disabilities, thank you for saying this. Nobody knows the life you live - or why a bigger/better fridge freezer might be to the great benefit of a child. For example, my son only eats three kinds of food - and is currently in a place where leaving the house with him is extremely challenging. Buying his foods in bulk and storing them safely makes caring for him 1000x easier and means my days can be spent working in my job and dealing with the mountain of appointments and admin rather than rushing back and forth from Tesco. I use his DLA to buy the continence wear that he needs at 11 years old - and regularly replace his communication device when he smashes it. Not having to pay for that out of my own money means that I can then pay for things like new appliances when needed. I'm sure the OP isn't using DLA money to buy herself fancy things and leaving her child to go without.

Exactly. This is the same as men seething that their ex’s are getting their nails done with child maintenance when they finally pay up. As if that mother isn’t also funding feeding and clothing and housing and caring for the child, often alone and for years before getting help.