Sometimes having a SN child is just rubbish

[MooMummyMoo]

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.

Yes frizz that's exactly how I feel. It's so good to hear people saying the same thing for a change.

I've just opened pink fizzy stuff to drink, any further posts from me should be taken with a pinch of salt
Well for this evening at least

I think most people feel like this who have children with disabilities. Sometimes we don't feel down about it and sometimes we do.

I think most don't admit we feel these things, because we are not supposed to feel things like this about our children, now add in a child with a disability and a mother who says eff this, I didn't ask for this and it's shit.

Well now, that's the kind of thing that would have Esther Rantsalot up in arms and the Daily Fail talking they're usual shit, they'd write about how SN mums hate their children.

We are supposed to be saints and I think that many of us try to live up to that, because we don't want anyone to think that we are awful mothers, we don't want to admit how bad things are, lest it should lead to another diagnosis (because who the hell wants more dx, because ultimately it doesn't get you extra help, it just gives professional more ammunition as to why they can't help), and because it seems disloyal to our dc. We don't tell the whole truth until breaking point and beyond because we don't want sympathy, that's infuriating.
It's a vicious circle. And all the while you feel it's you against the world, sourcing help, fighting for help, pushing, pushing, pushing. Then, the very dc you're fighting for behave towards you hatefully/aggressively/indifferently/passively and you think why am I doing this? What is the bloody point?

And yet we all keep going...

Thorn I hear you. We were lucky in some ways, as ds1 was taken ill on the first day of Enrichment Week and missed the rest. That said, I strongly suspect the illness was actually stress and anxiety, so directly caused by the EW anyway.

I really understand your feeling like a tiny person comment too. Sometime I feel like when I try and voice how I'm feeling I am just a tiny little squeak at the corner of everyone else's consciousness. Some people sort of hear but are of the 'there, there, it can only get better' or 'you are so strong, I couldn't do what you do' school, whereas I don't feel like my direct family even hear me anymore.

I have no alcohol this evening, but will shortly be partaking of my bedtime codeine, so could well be spouting absolute rubbish fairly shortly.

Then, the very dc you're fighting for behave towards you hatefully/aggressively/indifferently/passively and you think why am I doing this? perfectly put frizz, enjoy your pink fizz.

moo dd said she felt sick every day this week but I just had to keep sending her in.

I have wine, it's going down very nicely

That was to moose

Ds claimed he had a really bad sore throat and started having bad asthma attacks, when he doesn't usually get asthma at this time of year. On top of that he had constant upset stomachs and didn't sleep at all.

Significantly his symptoms suddenly improved at 12.00 on Friday - his school closed for the Summer at 12.15. It was as if once he knew he couldn't go/be sent back he could finally relax.

We did take him to the GP who said he felt it was most likely viral. I'm not convinced.

Yes somedays it's dam right sh*t. At best its normal (normal for me anyway). DS3 was ill last week so I took jim to the doctors where he pulled my hair hit me and pinched me hard I almost cried in front of the doctor - more from shock but its been 8 days and Im still bruised. I think my kids disabilities are tape that wrap them up and smoother the real them. I often wonder they are like beyond their disability. It kills me wondering what they would / should / could be like. I know this is what they where meant to be like and it can't be any other way - but yes I would cut off both my legs to make it go away. There are no benefits yet that I can see, I cant see how there every will be. Yes it's turned me into a warrior mum but I never wanted the role to start with. I go to a SN group and when we introduced ourself I had to say one positive about this. I couldn't think of anything

2boys I would struggle with a positive too

Yesterday I went to a social at dd2s school she fits in at her special school perfectly, I then remembered the ofsted report mentioned pupils tend to have severe autism, for some reason remembering that has been like a punch in the stomach

I rarely post on the sn boards as DD is fairly mildly on the spectrum - or so I tell myself. However, we've been visiting family and it is SO obvious that she's not NT when we're out of the safe bubble we've created for ourselves.

Usually life just carries on fairly easily, but tonight I have just been reduced to tears by the lack of understanding from family. The worst thing is that they think they get it, but they don't really. So they see dd as immature and rude, and a bit odd, and if I just tried a bit harder she'd be better behaved. They see the 'obvious' bits of a spectrum kid, like fidgeting and changing topic, and accommodate that, but not the less pleasant stuff.

Anyway, we're heading back home tomorrow where dd & I will go to our normal school where I will teach summer camp to a load of quirky kids, and she will be in camp with a load of quirky kids, and we'll both be much happier and less stressed. And we will live in our little quirky bubble where we're not judged for being a bit different, and we're loved and accepted just the way we are.

Today I'm autismed out , dd2 has emptied baby wipes turned taps on and shouted at us

Yes my family don't get it. In laws can't beyond denial. Mum wonders when he will grow out of it. Sister thinks its a blessing that both boys will only be able to use one part of their brain and therefore be geniuses. I bet they wouldn't be so chuffed it is was there kid.

Oh how I love to repay their crappy 'advice' "at least he is good looking, there's nothing wrong with that child" and my pet peeve "it could be worse" yes it could alway be feeling worse you moron. If you was hit by a bus and lost both legs it could be worse if you died at the sence. If you had a terminal illness your partner could leave you and you could robbed and your house could catch fire and....

But if my I was just to blow off everyone's (minor) issues with it could be worse - I am a cold cow

However I don't - because I'm made of stronger stuff

I'm currently sat in the car, after driving around. Ds had the mother of all melt downs (this is very rare for him) and its knocked me for 6.
Had to go to in-laws today, so was on high alert for triggers. Mother in-law usual critical self. Dh is being arse because his ancient computer died (we have 3 laptops and 2 tablets in the house it's not like we've reverted to 1989). Dd (the nt one) started screaming because it was bed time. I picked up the car keys and left, god knows what our neighbours think of us with all the bloody screaming.

Waves at autumn
Welcome to kickass

Also waving at 2boys we cross posted, so didn't see you to wave before

I have really not been handling it well the past couple of weeks. I'm so so tired out (27 weeks pregnant) and it's DS's mission in life to push every button I have.

DH has been working 6 day weeks and DS hasn't been going to sleep until well after 10pm. Up before 6am too. It's relentless.

At least we have seen the back of professional visits. Now DS is on the school roll for Sept, all the tutors/support workers/counsellors/specialist teachers have finished their visits. It's been at least twice weekly for two years now, and while I deeply appreciate the help we've had, I will be very glad that our home is our own again.

The "it could be worse" card is a very familiar, even by some of the professionals. DS's tutor asked what had happened surrounding his exclusion and responded with "Oh well, at least it's not cancer".

She lasted three weeks before we requested a replacement!

When DS got his dx and was prescribed melatonin, I tried to explain it to DM who was worried about "sleeping pills" by explaining that it was a natural hormone that DS lacked and it wasn't any different than giving him a supplement really.

The next thing I know, her and DSis were in Holland and Barretts trying to buy some for DNephew (3) because he sometimes woke up at 5.30 in the morning!

Oh God,thank you, thank you, thank you for this thread!
Everything I have read has resonated with me and made me feel that I'm not alone.

(I'm a log-time poster on this board, but had to name change after all the Heartbleed stuff.)

DD1 has AS and after a month of what I can only describe as sheer hell, I feel like I just can't do it any more. Then I feel like a failure ;etc;etc.

Starlight your first post summed it all up for me. Very well said.
Plus all the posts about family - honestly, I feel real rage towards family members at times, with their trite comments and lack of understanding.
These days, we tell them absolutely nothing- it's a waste of time and they off no real help or support and I end up feeling worse than I did originally.

I, too, feel invisible. I feel that it has to be pretty clear that I'm struggling, but nobody can see it.I feel like I could be standing in the middle of the street screaming and, somehow, people still wouldn't see me.

So we just carry on, don't we? Hoping that there's a bit of down time before the next issues rear their heads. I have been fire-fighting all over the place lately and am shattered.
Sorry, I have ranted too much. This just seems like a safe place, where people actually understand and don't judge.

I'm just so sorry that so many of you are going through the same thing.
I hope you are all able to find a few minutes in your day to grab a cuppa and a bit of breathing space.

This thread actually spurred me on to talk to dh about just how invisible and small I feel I have become, as well as properly talk about my worries re coping for the whole summer holidays with all 3 dcs home and him working long hours and doing overnight launches etc.

Not sure anything will change, but I do feel better for actually getting it all out and I think it has taken some of the weight off my shoulders.

Actually had a really nice walk over the fields with the dcs and dogs for almost two hours this morning - bar a bit of whingeing about how far we'd walked and how exhausted they all were. (Told them they will all be super fit by the time they go back to school. ) Went early to avoid the hot weather, but it was still boiling by the time we got back at 11.30. Seemed to have worked well to exhaust both kids and dogs, which is good. They had an hour's tv when we got back, followed by lunch and now the boys are having computer time - so peace reigneth in the Moose household ... for now.

I find it hard to believe the whole day can go this smoothly, feel like I'm waiting for something to rear up and bite me on the bum.

Moose I know that feeling , if a day goes well I'm waiting for ds or dd2 to have a crisis

Yes that cancer comment is just so stupid. It's like saying to a cancer patient - it could be worse - it could be AIDS. Its all bad news and there is no point comparing. If you was at the doctors and he told you there was someone worse in the waiting room would you feel grateful you wouldn't tell him about your symptoms? I think not

I am having a baby in four weeks but I feel invisible too. To my family and in laws. Think about it like this - what do they bring to the table? What can they offer that will be of benefit? In my case its zilch so there is nothing to miss out on. Nothing to miss.

In my more angry moments I think about them in their OAP homes all lonely with no grand kids visiting. I will say "They don't do all that family thing as they wasn't brought up in a close family" or "they are too busy getting drunk, working, being absorbed in themselves, find you just too hard work, don't have feelings for you"

Still I think it makes me bitter. Everytime I see a grandparent on holiday with their family or pick their grandkids up from school knowing my in laws see my kids for two hours max once a year I can't help but resent them even more for denying
my kids that

Well done moose.

I wondered if anyone had counselling to help with the feelings of 'invisibility'?

I have a very intense relationship with dd, who is 14. It's just me and her, her dad died sadly. I don't tell other family members too much detail about what goes on as their loyalties are then torn.

I feel I spend a lot of time swallowing my feelings. I have to forgive dd some awful things and it eats away at me.

This morning dd was really aggressive and violent, I went off to work and painted on a smile. No-one had a clue about what had happened prior to me arriving.

I find it really hard when other people say 'urgh, school holidays, blah blah'

For me, it's a small window of time when I don't have to think about all the things that DS can't do. And we can just be. Without his inability to do X, Y and Z shining me in the face. And without my coming up with strategies to make difficult situations easier every single day.

When he doesn't have to go to school, I can structure our days so that they work for us. We can actually do some quite fun and exciting things because I can prep him for them properly. More than anything, I'm not thinking about his disability all the time

Yes - yay for holdays where achevments can go on the back burner for a few weeks. I am so sick of people posting on FB on their genius kids reports too. My ds did average but worked his guts out. But who wants to hear that?

Just seen MIL has shared a post on loving kids with autism on FB - what a ironic joke! To love a child with autism you must accept a child has autism.

Maybe she can love all the other autistic kids - unless they are closely related to her. At which point it becomes un palatable

Off to bed to grind my teeth in my sleep - lol!!!

2boys dd2 is at a special school and we were told at diagnosis she would need a statement and mil still doesn't get it and blames my parenting ,I'm dreading the holidays dd2 needs her school and routine and bluntly so do i