Am I mediocre?

[Livingtothefull]

Sitting up late of an evening as I often do:

My disabled DS has kept us busy today on what is ostensibly our day off. It has been a stressful week, I haven't been well (stress related) and DH has just been working flat out.

DS has had a bad cold so we put him to bed and he slept for a couple of hours. Then he woke up and wanted to come downstairs.

I could tell by the smell that he needed cleaning, and indeed he did. Cleaning an incontinent adult is not like cleaning a baby; they produce so much more that needs cleaning. 20 minutes, two bin bags and three packs of wipes later I had finally accomplished it.

30 mins later - more shit. This time it was DH's turn, at least there are 2 of us to deal with it. One set of pyjamas and an entire set of bedclothes needing washing.

Whilst stripping the bed we realised that he had left a trail of shit all the way down the carpeted stairs (he can't walk so has to bottom shuffle down). So lots of shampooing and scrubbing needed. This is supposed to be our time off?

I dearly love my DS. But I sure as hell don't love what comes out of him. Does that make me a terrible person, less than saintly?

After DS had gone to bed it transpired that he had broken his IPad again. We have had it repaired twice and just can't afford to keep getting it done....but he relies on it for much of his entertainment at home, it gives him great joy. What to do?

Many people like to feel that we are destined for great things and scorn mediocrity. I am no exception; but I don't know how I am supposed to rise above this sort of life? After all, you can't get much more mediocre than shit.

Mumsnet can be brilliant sometimes, but tone deaf at others

I agree. In the general Mumsnet world the only type of "special needs" or disability is autism...

No indeed you are most certainly not mediocre. Caring, in every sense of the word, loving, patient, determined, heroic, in fact all-round amazing.

Your posts are very humbling to read. I wish you had the support you deserve and I wish you knew just how wonderful you are.

You've been dealt a tough hand OP, nothing mediocre about it. It's a huge challenge to care for a loved one the way your DS relies on you to do. He sounds like he brings you lots of joy, and you sounds like you do a brilliant job loving him and caring for him. Just wish we had funding to do more to support families like yours.

Hi @TinaWeymouthsBass your post highlights so many of the difficulties that parents of disabled DCs face.... the lack of understanding of the realities of what we are dealing with, the lack of free time and space and often, sleep.

Above all, that pernicious resentment among some people about the benefits that the disabled receive; how anyone could resent them receiving things that make their lives easier, to the extent of targeting them like this, I don't know but there it is. I am really sorry this happened to you; similar things are sadly common, they have happened to us too.

For example: we attended an evening social event at a community centre for disabled young people and their families. Some local residents had resented not having access to the centre's car park so to get their 'revenge' they padlocked the gate, locking all the cars in so nobody could leave at the end.

Bear in mind that many of the young people were highly vulnerable, needed meds and other care etc. - how could anyone do that?

Lots of other anecdotes where that came from unfortunately.

That’s shocking to hear about the people who locked the car park OP

It was @Tattoovirgin . The local residents had been complaining & lobbying for the use of the car park for some time but it been refused....there are of course obvious reasons why disabled people need to count on access to parking. So that's how we know it was done in revenge.

💐 for you OP. I don’t know how you manage to do all of that. You sound amazing to me! I also noticed the trigger warning being added and then being taken off. I think it’s poor taste that they haven’t responded though

Appalling, OP. Hope everyone was okay and you got out without too much hassle. Some people really are puzzlingly entitled.

Or the time we came back from the supermarket car park to find a parking ticket on our car with its disabled badge displayed, because we were parked slightly crookedly. I am not saying that we weren't maybe technically at fault.....but a cursory look around the car park and there were other crooked cars with no tickets, in fact we were the only car with a ticket. Yes Council workers are just as likely as anyone else to resent disabled people 'rolling in benefits'.

You're absolutely not mediocre. You're coping with a thankless, unpaid endless job. The sheer grind of caring for disabled children is often spoken of, but I think the sheer visceral disgust is never mentioned. It can really suck the life out of you. My youngest has ASD ID, and is toilet trained but still needs to be wiped, and there are regular mishaps. I honestly think it took us the guts of 10 years to train him properly. I have so much empathy for you & im so sorry.

By the way, we're in the same boat with iPads, have drawers full of broken ones. Please buy AppleCare (the insurance policy) next time you buy one. It costs €79 additionally when you buy a device but it entitles you to unlimited repairs for 2 years. Our last iPad has been totally replaced twice. Its so worth it. It takes about a week to go through so you have to be able to cope without one for a week or so.

All the best xx

OP, just wanted to add another voice of solidarity. I have 13 yr old twins, both autistic and in need of extra support and care eg/neither will shower or bathe unaccompanied, not once in 13 years. In fairness it wouldn’t be safe for DS to shower on his own anyway. He’s still in nappies - and like you describe, cleaning an older person is very very different to changing a baby’s nappy! DS has very significant needs.

I work FT but am self employed so I flex around their needs. If I could evolve the need to do without sleep it would be helpful! 😂

What hit home for me was COVID. Suddenly lots of people were leading similar lives to us. No overseas holidays, no holidays at all in fact. Only going out locally occasionally, and a trip to the supermarket is a noteworthy event.

All the comments from people post-lockdown saying “that’s no life to lead, THANK GOD we can go back to living properly again now”.

Some of us will be living that “dreadful” life for the rest of our days. I don’t blame people for being relieved that the restrictions were lifted, not at all. But hearing such damning condemnation of what is actually my normal life for the foreseeable future was hard, I admit.

You're breaking my heart
You are incredible
And so is your husband

Get the screen replaced so your son has joy and that you have peace

Does he communicate with you? Can you ask him to shout to you if he has an accident next time?

Sounds like your weekend has been the total pits

Sending you love

If this happens, and you can be arsed, take photos, including of the other cars parked badly. That's discrimination against a protected characteristic, and shouldn't happen; the traffic warden should be disciplined.

@Livingtothefull
the resentment is hard to deal with, I've lost count of how many times I've been challenged by members of the public for parking in a disabled bay sometimes they're down right abusive which when you've had 3 or 4 nights of little sleep can be devastating.
The latest damaged to my car cost £500 to repair, I've stopped claiming on the insurance as my premiums were going up and up, I'd get rid of it if I didn't rely on it to get dd to school and to appointments.

You poor thing, it sounds really tough. Can you do things at home, like yoga can make you feel more ''in control'' even when your life seems set on a restrictive path and you can't get off. I am useless at sculpting but I know I've experienced a lot of very simple joy trying to shape figures out of clay.
i need to bring more joy in to my life but I procrastinate so badly.

not mediocre at all! goodness me!

re: the ipad. Have you tried an otterbox? I have a 7 year old ipad that has survived in one piece, despite bouncing down the stairs at least once every couple of months, in an otterbox. It cost me a small fortune when I got it but it has very much been worth it.

Many people like to feel that we are destined for great things and scorn mediocrity.

Here's how I see this comment, OP. Despite a culture of over-sharing and a tendency for people to boast about how wonderful their lives are, I suggest that life will sooner or later show most of us that very, very few people are destined for great things. You can work your backside off, gain a PhD, which makes you far from intellectually mediocre. Then you actually get into the job and realize the glass ceilings are still there, that unless you came through an elite institution you'll be kept in your place, that the people propping up the system are treated as worse than shit, whilst middle-management or those who've sucked up to the establishment are overwhelmingly mediocre but destined to fail upwards.

You can give everything to a system you thought you believed in, only to discover that the system doesn't love you back. And that's a bitter pill.

I am no exception; but I don't know how I am supposed to rise above this sort of life? After all, you can't get much more mediocre than shit.

Yes, you can. Just look at the Honours' list - some of the people at the top of the elitist hierarchy of this country. (Andrew Windsor currently in Bahrain, sucking up to yet more corrupt regimes and individuals, for one). Mediocrity abounds; their privilege is entirely social. And he, at least, is as thick as mince and can't even lie straight in bed.

I'd rather have my ordinary, unremarkable life. And what you are doing trumps that sort of hedonistic, self-centred lifestyle 1000X over. When did those of that walk of life care for or protect even one individual, despite their pontifications that the rest of us should protect the environment and be kind? A lot of them have abused their privilege actively to harm others. You're worth a million of them.

I am really sorry @TinaWeymouthsBass that you have had to deal with that. It is truly disgusting, you should be compensated for the damage to your car & not be having to cover the cost yourself.

We get fewer challenges about disabled bays but I think this is because DS is very visibly disabled (he is in a wheelchair). For many people who don't know better, disabled has to mean 'wheelchair'. In practice many people can have profound and complex needs regardless of superficially presenting as 'normal'. I have learned better than to challenge anyone about using a disabled space, because getting this wrong can be horribly damaging as you describe.

But abuse from members of the public whilst just going about our business? Yes we have had that too and frequently.

This. When I saw the thread title I thought 'What's wrong with being mediocre?' but, having read your post, I think you are not in any way mediocre. You have my admiration for coping at all.

Lots of good ideas for protecting the iPad, many thanks. I will look into some of these....it will need to be DS-proof as he does tend to attack the covers as well as the iPads!

OP you are far from mediocre. I think you sound amazing

There is a lot in what you say @MarieIVanArkleStinks . All the wrong people are on pedestals, we put value on all the wrong things. I must say that in my professional life whenever I have come across the people with real privilege it is an eye opener, they operate in a totally different world from the rest of us.

The wrong things and people are valued, we all KNOW this yet nothing ever changes. The latest example - Harry & Meghan are to get a humanitarian award (I don't intend to single them out as I know they have had a media bashing - just that they are the most recent example). Why are they not embarrassed to receive it, when people all over the world have been and are working tirelessly for human rights - making real sacrifices and placing themselves at real risk? I just don't know why as a society, we can't do better in placing value where we know it belongs.

I have the t shirt too, and know all about adult sized poonamis. Presumably he wears an incontinence nappy? You can get adult sized onsies which do up at the back so he can't undo it and smear. have you had a grant to put in a wet room? so much easier.

I just want to add my support that you both sound like wonderfully caring and supportive parents & your DS is very lucky. It's incredibly tough, and you're in no way mediocre- you're so strong, and you are amazing!

I saw @MNHQ change your title briefly and was very confused, you 100% deserve an explanation and what's more... you deserve an apology.

Good advice about iPad insurance too, thanks @NOtfinished