Do any of you get upset/ pissed off/ frustrations at the way your life is limited?

[guiltyconfession]

Proviso no 1: I feel guilty even writing this

Proviso no 2: I love DS1 (ASD) with all my heart and we try to do everything possible together as a family

However...especially in school holidays I find myself getting very down about how limited life can be not just for me and DH but for our other 2 DC. There are many things we cannot contemplate doing altogether and we either have to give those things up altogether, separate the family and one of us stay with DS1...or sometimes we attempt them altogether in a positive and upbeat mindset, only more often than not for me to end up in tears after we get home as it all went so wrong.

As an example we went to see Santa last week with all the children and DS1 had the mother of all meltdowns as we walked in. A real humdinger, screaming, lashing out, the works. Everyone around us was staring, our other 2 children were distressed and I was broken-hearted, especially seeing all the other families around us with happy and excited kids.

There is one more option we have, and that is to fit everything into the 4hrs of respite time we get per week. You can imagine how hard that is over the holidays. The others want to do the things their friends are doing, going to the cinema, days out, all the usual things kids look forward to in their holidays. And holidays themselves are another big issue....we are severely limited in where we can even contemplate going.

It feels like the other 2 are missing out so very much, through no fault of their own. It feels like we are always going to be dependent on the charity of others in order for us to snatch brief periods of normality. The normality other people take completely for granted.

And ok I'll say it (in shame)...sometimes it just feels so fucking unfair.

Blimey, this is horrendously self-pitying. Really need to give myself a kick up the arse!

One of our DS godmother's just thinks I'm making a lot of fuss about nothing . What is it with people? ((hugs))

I think the most shocked I have been by anothers attitude to ds1 is my dh's cousin - who has a 34 year old dsis with SN!!!!

She just doesnt seem to care about anyone but herself and her family and as Ds1's problems arent as obvious as her sisters, it cant be that bad, can it?

Have actually left FB because of her passive agressive posts - she lives in Austria BY CHOICE. Her other sister lives in Plymouth BY CHOICE and all they do is post about how easy it must be with family close by to help out - like me.

Erm, no. Its not easy. Its soul destroying actually, because I rely on my PILs so much I cannot tell them when their behaviour crosses a boundary - which it does at times.

Sigh.

Out of interest, WWYD? Leave quietly like I have or e mail and tell her the above?? I so desperately want to - which probably definately means I shouldnt!!!!

Becarooo, what about trying writing a letter to this cousin but putting it away in a drawer for a week or two. You might find its cathartic to just get it all out and maybe it would be enough.
I'm thinking of writing one for my sis. She is driving me mad by not even engaging with ds' issues, every time I mention that we're having a hard time she just dismisses me or worse implies we are just not strict enough with him (doesn't seem to matter that dd is actually better behaved and has better manners than either of her two, of course it's our parenting).
Last week I said how bad it was but she just said 'oh, it's just because he's out of the routine of school, they're all like that' (they had only broken up the day before at the time) so I didn't bother her with the details of what had actually happened. Ds (5.8) had been playing at his (only) friend's house and unprovoked bitten him on the face. The friend's mum rang me to collect which I did. He started freaking out because he didn't want to go, I managed to get him screaming out to the car but I couldn't get him belted in so we were stranded with him thrashing and screaming. He then punched me in the face inducing a massive nosebleed (I had no tissues of course) he carries on freaking while i am crying and blood is streaming down my face and soaking my clothes. He screams at me 'why are you being so horrible to me? Why don't you stop making that horrible noise (crying) and then I'll start feeling better?!'
Eventually I started to drive off without him belted in and he panicked saying 'you can't do that else the police will get me!' and we got the seatbelt on. The nosebleed continued for 25 mins.
Now I worry that he has f*ed up the only friendship he had.
Still, as my sister says 'it's just because he's out of the routine of school'.

I want to give everyone on this thread a huge hug and wish I could wave a magic wand to give everyone a better start to 2012.

We're bloody marvellous, aren't we?

We're 'special mummies' Tall

pop Oh you poor thing! And your poor ds...the world must seem a strange and scary place for him

I am so lucky with ds1's behaviour in one respect in that he is not violent and behaves at school...he saves his ocd-ish traits and anxiety for home dh and I are pinning our hopes that soon we will be able to introduce sleeping alone and more self care but, who knows???

Sending you all love x

pop Funnily enough I typed out an e mail to her but then deleted it. Have asked advice from dh's sister on the matter...I dont suppose I will do anything but it does help to write it down!

It is only when you write it down that you realise just how much shit you have to deal with sometimes- most of the time you just accept it as normal.
Ds has to be looked after as though he is a toddler even though he is getting on for 6. The scary thing about the nosebleed incident is that that kind of behaviour has been going on for years but now he is getting bigger he is capable of inflicting real damage.
Poor dd must get hurt dozens of times a day some days, but she still loves him and tries her best to help him despite getting almost no affection in return. The reality for us is that she actually just has to put up with it, the way things are right now, there is no disciplining him. If a consequence is given he just freaks out until it's over and then immediately re-offends. There are some good moments when they do have fun together and we just have to make the most of those when they do happen.
Strangely, there is no one in real life that really understands quite what our family life is like. In the company of other adults he knows well, like gps, aunts and uncles, he is nowhere near as bad (he focuses on them and leaves dd alone). We have gradually altered our social/leisure lifestyle so much to accommodate his needs, I can't even remember what we used to do before. Now we find it is the times when we are just at home trying to get on with day to day living (dressing, washing, cooking, cleaning etc) that are the biggest challenge.

It's not just friends/in laws who don't 'get it'; I have a SW who doesn't 'get it' either!!!
She came on a visit b4 Christmas (purely to drill me about what i spend the boys DLA on) and was nagging at youngest about him pooping himself the week before at a one off club thing (out of routine, the staff had all been messing about with him, play fighting etc which he can't just 'switch off' from when they've had enough, hence the dirty behaviour)...as a consequence of her nagging at him about it, he promptly went upstairs, pood himself copiously, and got in a full bath, covered in poop, laid down on it up to his chin and refused to get out, screaming, swearing n so on...while i was losing the will to livecleaning lumps of poop from the bath, throwing his clothes away, shouting at him to come back cos he needed a shower, cleaning the whole poop covered bathroom, he came downstairs and all she was concerned with was that his dressing gown was open and she could see his willy!
She also never batted an eyelid when my older son had previously tried to whack me with his size 9 pedro boot cos he didn't want to have a bath...

Later when i told her how upset she'd made youngest, she completely exonerated herself by saying it was because i had got 'emotional' in front of the boys...Bearing in mind she'd changed the appt from 2.30pm to 3.30pm when they get home from school.

Comes to something i think when one feels the need to have someone else present for support cos the SW who is supposed to make you feel supported makes you feel like poop!

unpaid, your social worker sounds as if they have become completely desensitised to the families she is meant to be acting as an advocate for. Either that or she's really unskilled. I have only just learned to be assertive with these people. I refuse appointments that do not suit and I have asked - and got - a change of social worker when our previous really let us down because he was trying to cover his mistakes by blaming us. There are some good ones around but the ones who hinder more than help are too plentiful

Bloody hell, unpaid, I'd ask for a different social worker. What do they teach them at college? And she has no right to tell you what to spend the DLA on. Cheeky bitch.

Oh, and about the poo, I feel your pain. I spent a large part of Christmas day cleaning poo off new toys, floor, walls, ds, then doing 3 loads of washing.

Still, we were all glad ds had finally had a poo...

unpaid i had the sw from hell! she believed that cos my house wasnt like a showhome (my disabled son is a messy so and so) that i couldnt look after him properly!!! my son promptly told her to f off!!!! (yes i did laugh behind her back) she didnt last long after that!!! have got a decent 1 now so tell them u want anotha 1 and why. i did an it made all the difference good luck xx