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Sometimes having a SN child is just rubbish

102 replies

MooMummyMoo · 16/07/2014 17:28

A self indulgent moan really. Just fed up. I know I should find the whole situation fulfilling and I should be telling people how much my wonderful SN DD teaches me everyday etc etc. but frankly, sometimes it's just rubbish and I hate it.

Earlier I left my DD with a book to look through - one of her favourites. When I came back she has shredded (and eaten a fair bit) of one page. This isn't hugely unusual but I find massively annoying. I shout, she just laughs, I get more angry.

She then later pulls her sisters hair. Also not uncommon but I am still simmering from before.

And now she is sat in a baby's bib (aged 4) as she is sitting spitting/dribbling and won't stop.

I hate days like this. I know all children can get to you at times but for some reason the SN element makes it all the more harder to deal with.

As I say, I am just moaning, but I need to let off steam somewhere and here is the only place I can do it.

OP posts:
moosemama · 17/07/2014 14:25

Grin Don't get it deleted Frizz - it made me laugh too!

Frusso · 17/07/2014 15:15

This reply has been deleted

Message withdrawn at poster's request.

MooMummyMoo · 17/07/2014 16:10

Ah that made me laugh! Today isn't going much better to yesterday unfortunately, but the magnum comment will keep me going until bed time!

OP posts:
frizzcat · 17/07/2014 16:53

Sorry was down the hole, you know, hiding and stuff.

I did report myself, but not heard from them, should I report myself again and ask them to let it stand?

Moo sorry to hear that, do you need some magnums?

starfishmummy · 17/07/2014 17:10

Ha!! That was me frizzcat!!!

starfishmummy · 17/07/2014 17:10

Ha!! That was me frizzcat!!!

frizzcat · 17/07/2014 17:14

Grin Star did you LTB?

Well it's all come good in the end, my damn good advice has made it to the right person.
Some people have laughed
I've dug a hole

Wine anyone?

MooMummyMoo · 17/07/2014 17:44

Give me 20 mins and I'll join you Frizz!

OP posts:
starfishmummy · 17/07/2014 18:17

Not yet frizz he isn't home yet.

Normally as soon as he arrives ds decides he needs the toilet - and wants Dad to take him. So I really hope that he is cultivating a nice dirty pad for Dh to clean up...

The incident appears to be down to him cooking himself a frozen pizza after I had gone to bed. The evidence - box in the recycling bin has been found!! (well as it was the only thing in there, I couldn't miss it!!)

frizzcat · 18/07/2014 09:30

Wishing you all a better day today.

Last day of school here today and the 6weeks are looming, how I miss smoking and its instant stress relieving nicotine.

Ds has now decided that should the weather report indicate rain, that crying about it is acceptable. I have therefore banned the weather forecast.

Star hoping your dh survived the night [wink{

Sahkoora · 18/07/2014 10:19

I really needed this thread today! Thanks everyone who has shared and been so honest. After almost a year of uninterrupted DS (while we waited for his school place), I feel like a ghost of myself. I barely see my DH and I've been a shit parent to DS2.

I absolutely hate the notion that kids' disabilities are blessings and that SN parents are only given what they can cope with by God. Aside from the fact I'm an atheist, it's twee, simplistic and totally untrue.

Family members are sooooo sympathetic when I talk to them and insist I must ALWAYS ask for help, but in reality it's never forthcoming in any way that makes a difference. Anything regular peters out as soon as they realise what hard work DS is or as soon as real life gives them something more exciting. I feel like I'm living in a parallel universe.

Worst of all, I've been told I'm "too negative" twice by close family recently. Once because I was expressing concern that taking DS to a huge open air event would mean we suffered as a family later because he would inevitably have an enormous meltdown at some point (he did). The second time was because I said I couldn't face moving house at the moment.

Anyone else get "It'll be FINE, I'll be there!" from family too? Any loud/overwhelming/crowded event that I say isn't suitable, DM always says this. As if she can neutralise DS's autism with her mere presence.

My family were of course all horrified when I floated the idea about applying for a couple of hours respite care a week because we're such a close family and everyone lives less than a mile apart and we can all help each other out ... HA!

As you can tell, a year alone with DS has turned me into a bitter, negative resentful old harridan. Sometimes I have felt as though I could just walk away from him and not care.

I hope that when he goes back to school I can get back the things I've lost, but six weeks still feels like a bloody long time.

autumnsmum · 18/07/2014 10:34

Sahkohra I'm an atheist as well , my mil is constantly telling me about children worse than dd2 , I also get totally impractical suggestions for days out. To cap it all I've got a huge scratch on my arm from changing dd2s shorts where her nappy had leaked and she didn't want changing

theDudesmummy · 18/07/2014 10:54

I absolutely agree. The crap about "special parents...", the "Welcome to Holland" platitudes, the "oh you are amazing, I could not do what you do"... etc etc. Sometimes you can suck it up but sometimes it just gets to you...

autumnsmum · 18/07/2014 10:56

The thing is I don't want to be doing what doing

Redoubtable · 18/07/2014 11:18

I haven't been around here for a while (life, DS, DD's, work, etc)

And I feel that my experience of having him has helped others and that is great for Karma and everything. But so what? Where was my choice? Where is my freedom? Where is my money? Where are my friends, my hobbies, my pension, my great marriage, my qualifications, my career, my life?

This summarises exactly how I feel at times.

DS is going to try a summer camp this year. I am in knots planning where I will be while he goes in, what my fall back plan is if they ring me after an hour to remove him (bitter experience has taught me it could go wrong), what to do after he comes home as the experience will exhaust him, doing Social Stories on the "rules" of how to behave in a new situation.
Friends merrily drop theirs off and go to do a shop, or meet for coffee. I can't commit to that.

I am not whining. This is the university of life- I am an immeasurably better person for having him.
But if I looked at what I have missed out on, I might break.

frizzcat really helped though Grin Grin

moosemama · 18/07/2014 11:46

Eurgh! I am having one of those days with ds1. He's finally stopped melting down after being caught watching YouTube videos, despite a screen ban. Mum has offered to have him for the rest of the day, but I know he'll construe that as me not loving him and it will just make things worse.

Just tried to sit down and have 'the talk' with him about lying and taking advantage etc, but he's adamant he thought he could do it - funny how he's only literal when it suits him. Basically, I was daft enough to allow him to watch one video on my laptop, as we'd had an email about a gaming project he's involved with and he somehow interpreted my "I am going to be kind and let you watch the video in the email" as 'you can then link to whatever you like on YouTube and watch several other videos as well'. Hmm He damn well knows he shouldn't have done it, but he's arguing black's white he thought I meant he could watch every video on the gaming company's channel. He knows, I know he's lying, but there's no way he's backing down, so I've sent him back up to his room.

This morning he told me he couldn't go and get dressed, as he is scared to be upstairs on his own (he was for years, but actively chooses to be up there quite often these days - when it suits him). He flatly refused to go unless ds2 was up there too, but I know he's been baiting and harassing ds2, so I wanted them to get dressed separately and made him - cue many tears and much shouting. Fast forward an hour and he's decided dd's rendition of the Frozen song (oh yes, we have that to deal with too Hmm) is too annoying, so where is he? He's on his bed - upstairs - reading a book, of his own volition. Hmm

Also had an enormous to do about tooth brushing when we got back from dropping the others at school this morning. Much ranting, screaming and sobbing (all because I wanted him to use the toothbrush timer, as he's literally only scaring his teeth with the brush these days and his teeth looked dire when he spoke to me in the playground) . This was followed by a talk about why I am teaching him appropriate hygiene and self-care skills and what would happen if I didn't.

Oh - and apparently he can't wear his Levellers t-shirt, the one I bought for him because he was jealous of ds2's - because although he likes alternative music, it's embarrassing and humiliating to be seen in public in it. Hmm Apparently wearing a t-shirt you've wiped snot on and dropped half your dinner down is fine - but an 80s/90s band t-shirt NO WAY! Hmm

I have no more energy for 'talks' and frankly feel like they're a waste of time anyway as he nods and agrees, promises not to do whatever it was again or to try harder - then does it again within 5 minutes of leaving me. Hmm

I have spend the past two weeks organising the holiday that we're going on - to the same place as we've been every year bar one since ds was born, because he won't go anywhere else - and as usual buying magazines, books and dvds to keep them busy while we're there (because ds1 now expects this based on previous years) and generally going all out to make sure they all have a great time, even though poor ds2 is really getting sick of the place - yet apparently I am a horrible, mean Mummy who doesn't love him.

Rant over - I will now return to the mountain of dirty washing I have, partially thanks to ds1 changing his t-shirt at least three times a day this week.

StarlightMcKenzie · 18/07/2014 12:03

'Apparently wearing a t-shirt you've wiped snot on and dropped half your dinner down is fine - but an 80s/90s band t-shirt NO WAY!'

ROFL

Redoubtable · 18/07/2014 12:07

moose I soo get it. You've described my DS... intermittent when it suits him fear of upstairs, DD1 singing Frozen drives him to distraction...down to the dirty t-shirt tussles.

I do think this time of the year brings out the worst in DS....end of school, different routines, school sports days, heat, bright evenings (.."it can't be bedtime, the sun is still up")

I sound evangelical about this on here, but I've found mindfulness podcasts really help me him to keep his cool. Would you try that?

Swanhildapirouetting · 18/07/2014 12:31

oh you've cheered me up. We are just about to go on holiday and I am in the parallel universe of packing two pairs of long trousers for ds1 because ds2 hates his hairy legs. In Spain.Shock Dh just told me to take them out though Hmm

moosemama · 18/07/2014 12:46

Star - I know! It would be funny - if it was happening to someone else! Grin

Redoubtable, ds1 has been off for two weeks now. He's bored without his siblings, but fights with them constantly when they're home.

I really should try the mindfulness thing. My Mum and Dsis are both big advocates. The nearest I get is immersing myself in a computer game and ignoring everyone for an hour. Blush

I did try guided meditation, but my Mum threw me out the room in the end because I kept giggling. Blush

Swanhilda, I feel your pain. I've been putting off packing the clothes for our holiday, but have now reached the point where I've pretty much sorted everything else and can't avoid it any longer. Actually, that hasn't exactly helped my general mood either. Hmm

frizzcat · 18/07/2014 13:25

What are mindfulness podcasts? Calming? Where do I sign?

Actually Redoutable ds current anxiety appears to be stemming from the current CD's on theTLP. And oh the joy that OT are now discharging him Angry

I often wonder at the things missed and I don't think I've ever really stopped mourning for the life I thought I'd have or actually anything closely resembling it.

Whilst I was thinking about my feelings for ds and telling dh that sometimes it was hard to love him, I had another though. I don't think ds will ever in years to come realise the fight that has taken place on his behalf. At some point it would be nice of he talked to me asked me how I was feeling or show an interest in me - but there's just nothing fr

frizzcat · 18/07/2014 13:30

KNICKERS! I have fat fingers

There isn't anything back from him, that isn't prompted a lot of the time. And yes I know that's ASD and its not his fault, but it's not mine either and so I think I'm allowed to be upset about it.

Also do any of you feel like you're disappearing? I sometimes feel that the lines around me that define me and make up my being have been rubbed out and bits of me are escaping .....
Oh Gawd, that sounds very dark, someone jump in quick and say they feel like too Grin

frizzcat · 18/07/2014 13:33

Seriously, I need to get into the habit of reading before posting - I'm not illiterate I'm just always in a bloody rush

moosemama · 18/07/2014 13:46

frizz, that's exactly what I said to my mum on the phone earlier. I feel like I've disappeared and there's nothing left of me anymore - although I know that's often a mum's lot - SN or not.

Just had yet another ding-dong here. This time I've discovered his blazer is ruined. He hasn't grown at all this year - and now he needs another bloody blazer, when that one would most likely have done him another year and a half. They were making masks at school on his last day, as part of enrichment week. He came home with his jumper covered in plaster of paris, but I didn't see his blazer. Well, that was covered in red paint, which has been through the washing machine, treated with stain remover and scrubbed until the colour was coming out of the blazer and turning the water dark blue, but it still won't shift. Ds is trying to tell me the teacher told them to use their blazers to rest their heads on while someone sloshed paint over their mask/face. Hmm I have told him I don't believe him and if it's true - which I doubt - then tough, because my current default position is not to believe a word that comes out of his mouth. Angry

I daren't add up the amount of equipment and uniform we've had to fork out for replacements for him this year, but I know it's a scary amount. Added to the fact that I checked last night how much we'd spent on ParentPay for other two's school this year - so excluding school fayres and events, sponsorship, cake sales ... teacher gifts etc and it came to almost £400 Shock I think I am starting to realise why we are always broke. Hmm

frizzcat · 18/07/2014 13:59

Phew! Cheers moose

It sounds like the paint is oil based, possibly? In which case baby oil might get it out. Then you'd have to put a heavy dose of fairy liquid on the bits where you'd used the oil, to take the oil marks out and bung it in the washing machine,

How old is he moosemama?