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!

When I tried forced us to have a 'Normal' life outside the home, DS was so stressed he spent half his waking hours looking for chances to physically attack his siblings. Now we have 'our' life, which means we miss out on a lot, but DS is happier and I feel better because dd is so much safer.

Its the need for constant planning and strategising to do the simplest things that currently winds me up. Having to always think ahead so we dont have a need to get petrol, or unscheduled milk-running-out, or bump into a friend in the high street who wants to stop and chat just at the wrong time.

I do feel a bit like I'm in jail though. If I didn't work, I think I'd lose my mind.

I'm lucky in that I do have some good friends, but the contrast between their dcs lives and mine is ridiculous. They all seem to be in rugby/football/cricket teams, play instruments, spend family time cycling or skating all those things we would never be able to do. Even going for a simple walk in the countryside is an ordeal. I used to love 'proper' walking and have had to force myself to slow down from my natural fast pace to not much more than a shuffle because if I try to rush ds he falls over and then I feel guilty. So yes, that is VERY frustrating!

Nowadays I've got more used to it, but I feel a bit sad that dd is growing up (16 soon) and naturally wanting to do her own thing more, but it's come too soon because there were all these things I wanted to do with her, but we couldn't because of ds. Plus there is always the odd event or comment that brings it all home and stings a bit. For example last week my dad (not the most sensitive soul) during a family conversation about holidays, said "when are you going to get around to going abroad then?" I just muttered something about getting round to it, but I was thinking "thanks a bunch dad, don't you think I feel bad enough that dd never gets a proper holiday like all her friends do every year? Firstly we have enough trouble finding the money for a few days camping, secondly Ds at a noisy, busy airport/in a plane having to sit still/ in a strange country where the food and everything else is different? Some holiday that would be!"

If you're self pitying, then I am too. Sometimes things happen that just bring home how different our lives are to most people's. Mostly we just get on with it, but it's much harder to do that in some situations. Knowing others feel the same helps a bit.

Hi Guilty
Don't feel bad, we all feel like this. It is darn frustrating.
My situation used to be that when my girl were younger I would take them out while their dad (the boys dad) stayed home with the boys. We couldn't do anything really as a family.

Now my situation has changed in that I am alone, my girls have flown the nest (one in Oz), and I am struggling to get through my PGCE (teaching qual) which is damned hard enough as it is, but with the boys I have felt like dropping out as it's so hard...what i mean is I have to do lots of teaching hours but because i have no support I've had to turn many down as I've had no one to stay with the boys so therefore I am working doubly hard doing the course anyway, squeezing lots of hours into a short space of time, and have the added bonus of dealing with 2 SLD boys who are both bigger than me (13 and nearly 15) and are dreadfully hard work at best, but i can't leave them alone.

Of course if SS were to pull their finger out and gimme some support it would be different. I could almost pretend i was a normal person as i would have more time etc.

I don't feel guilty for feeling resentful at times and i also don't feel guilty for wanting to headbutt my stupid Bint of a SW for failing me so remarkably well!

(Example: the last conversation involved her telling me she was concerned with how i spend the boys DLA as it wasn't meant to be spent on clothing or bedding- bearing in mind how they get through things and youngest constantly soiling etc...)

Hello,yes I can relate to this.Our ds is 23 now and needs 24 hour care.
We have been very limited.He is an unusual one,extreme violent mood swings.In nappies,has to be spoon fed even drinks,violent fits.The physical violence in crowded places has to be seen to be believed,think Lager lout off his head at 3 in the morning!
I think we have got used to things.We only do things together when he is not here,which is very little precious time actually.But that is the point-the time does feel very precious indeed.In our situation the little things feel just fantastic.And we have a strong relationship,as we have been tested to the limit.
I was in a very dark place when my ds was under 10 years but I started to feel better as he got older,which I think was due to adjustment,which takes much longer than you think.Hang in there and do not feel alone!

Again, thanks so much for all your posts. I'm so very sorry that my OP made some people upset yesterday.

I get a lot of strength from hearing everyone else's stories and wine

don't feel sorry - I felt upset yesterday but it was just because it was NYE.

@jardy: that sounds incredibly hard. Have you tried any medication to help with the mood and physical violence? Xx

@ guilty..........dont be sorry.

A virtual group blub is just as good sometimes as a virtual group hug xx

OP I completely understand and feel the same. We have 2 ds,s and ds2 is asd. Dh and I have no life of our own and no friends. We used to have friends and a social life and now nothing. I have a couple of friends I see occasionally but no couple friends anymore. Its very hard for us and ds is hard work and it does effect our relationship. we cant do normal family things for ds1 amd I am envious of people who can. Its bloody unfair isnt it?

This is almost the worst thing, really, isn't it. The sadness when you see/hear about friends cycling together as a family, or going to the pictures, or even for a walk in the countryside. I've given up on ever being invited as a family to someone's house.

It has got slightly better over the years, I know when to insist, when to lay off, what to avoid, what can be managed. I have forgiven myself for letting DS2 take his iPod touch to keep him happy or other coping strategies just to ensure we all have a nice time.

Now I'm a single parent it's suddenly got more difficult again as I can't do anything 1:1 with any of my 3 boys, but at least DS1 is 14 and can do some stuff independently and will do a spot of babysitting (because he has grown up with DS2 and knows how to handle him.) I'm taking them to Center Parcs for a weekend in March to coincide with an inset day. Never done that on my own before.

EllenJane oh, center parcs sounds like fun!! but yes, it's a bit scary sometimes taking both boys out on my own. I don't have a choice for school run, but it's always in the back of my mind that if both boys kick off, I'm going to have to carry one and push the other in the pushchair. Not a great option. But I'm forcing myself to take them places anyway. eeek!

It is shit. The terrible isolation and sense of the world passing us by have been the chief source of my grief as a parent of a severely disabled child.

I have learned to be pragmatic and slightly hard-hearted about it. DS1 is nearly 16 and I have learnt over the years that without a good respite package, we have no quality of life. I compartmentalise my life and have my mainstream world (mainly via DS2) and SN world. DS2 gets to do stuff when DS1 isn't around. We used to do lots of stuff as a family but it became impossible. DH and I take the boys out separately so we exist like single parents within the relationship when it comes to childcare, (though single parents who take it in turns to have the kids, not truly lone parents). It saves DS2 aborted trips and disappointments and severe embarrassment. We don't try to push boundaries any more. A good day out is one where I am not attacked and DS1 doesn't lash out at complete strangers!!

We all have such different challenges, but I'm glad that on this board nobody ever puts ones problems down as trivial. I do feel guilty sometimes when others obviously have much more severely disabled DC, but there are pros and cons in most situations, I suppose. Anyway, ((((hugs)))) to you all.

I just read my previous post back and just wanted to add that I don't get my 14 yo to babysit for me in the evenings. Just in the day for 1/2 an hour, so I can pop to Sainsbury. He's too young a 14 to have that responsibility for too long, but it will come. And now Dickhead has left I do get some alternate w/e respite for myself. It's just that the kids are always all 3 together with one parent, now, so they get no 1:1 at all.

timetoask:he has severe epilepsy and we have found lamictal stabilises his mood but still does not stop the break through violent episodes.It is incredibly hard,yes.When he is enraged (through no particular reason)it is very frightening,I usually leg it to the bathroom and lock myself in if I can but both my dh and myself have had some bad injuries including black eyes and severe bruises.I showed the SW the blood sodden and ripped top from the last episode and I have been told we can have an assessment but in view of cut backs we might have services taken off us!.You just have to take the breaks when you can - to me a walk around the block can feel refreshing,especially as the sun is shining today

feel much the same; spent the past week more or less in the house but ds2 (hfa/adhd)is relaxed and happy; dp working. ds1 and dd3 taken nowhere and more of the same to come really. feel guilty, judged and a bit depressed about it all. Oh and work to go back to tomorrow. Somehow expected to find the money and energy to go full throttle into after school activities for all dc's, feeling v sorry for myself - feel like I hold ds1 and dd3 back, family do to. Can't really go anywhere as a family so going to activities is a nightmare. sorry for rant x

The sibs website might be useful, there might even be a group near you www.sibs.org.uk/

Another one here shedding a tear. What makes me so angry is how so many of us have lost friends - or people who we thought were friends.

I'm tempted to link this on AIBU. It might prompt one or two people to make an effort with a sn parent, invite their child to a party or something.

pffffttt.... doubt it, unfortunately... although it does point out who your friends are and who isn't bothered....

I think it shows just how isolated we do become though... a friend asked me if DH & I would like to bring the boys and spend the evening with them and have a few drinks (they live within walking distance of our house, so no driving home worries). I kind of hemmed and hawed, citing issues with DS2, and she said "oh for goodness sake, let yourself relax a bit. We'll ALL help out with DS2, and we'll all have a good time. You don't need to worry so much about whether or not he'll act up, he's a kid, they all do at some point!" I literally teared up and told her we'd definitely come over. She's got two children roughly in same age group as DS2, so they can all play together hopefully. If not, he'll bring his DS and play.

Guilty, you deserve a medal for the job you do and should never feel guilty at being frustrated, upset etc. Only when you have a dc with special needs do you know how difficult it is on the whole family. I have 3 ds, one ds aged 10 has severe autism, gdd, low muscle tone, pica. He is extremely hard work and like you i get annoyed that cannot do normal family things. I am fortunate that ds went to respite from fri 30 dec came home this morning so got to have real quality time with dh and other 2 ds. Everyone was like are you going out to get drunk for new year, and do you know it never even entered my mind we stayed in had quiet wee night enjoying being a family, watching tv etc and recharged my batteries for ds coming home today. Missed him more thsn anything but to have that few days respite was priceless, need this time just to keep our family together. Happy new year to all on mumsnet, may 2012 be good to you all.

Thanks Shazian . On the rare occasions we have been without ds1 for a day, like you, we don't try and fit in everything we've been missing out on. We also just spend time together and savour the slice of normality. It's so achingly precious. I cannot imagine what it must be like to live a life like that all the time, with life getting easier and easier as your kids grow up. And to not ever give any thought to how different it might have been had fate thrown the dice a little differently....

Re friends...yes, the loss of friends has been exquisitely painful to bear. My closest friend and ds1's godmother, broke off all contact with me the day after ds1 was diagnosed. I don't think I'll ever come to terms with the brutality of that act. I have a few good friends, but it's like there's a barrier between us and those without sn kids. Neither of us can imagine the others' life! And often the friends from dd's school, lovely as they are, never give a thought to how I might be coping (or not) in school holidays or otherwise. It's like bereavement or illness, I guess, people don't want it coming too close to their own lives. I long ago learnt to give a v cursory answer if anyone asked after ds1...if I started emoting and explaining battles and dramas of which they would have no comprehension I can see it wouldn't go down well. Like bereavement, people seem to be v kind and concerned in the early stages after diagnosis, but after a few weeks you're expected to have 'got over it' and not bore people with the ongoing difficulties.

And they tend to refer to you as a 'special' mum, which drives me bonkers. All that does is create more separation between you and isolate you further. I'm not special, I'm just like them. And treading water desperately trying to cope. Just like they would have been

PS thanks for the sibs info dazey

Oh guilty I hate the 'special' thing too. I'm not special, I'm exhausted and stressed and worried and actually, if you could be bothered to ask me what I need, you might actually be able to help me. But instead you pat me on the head, say I'm special and that means you don't have to move you or your NT kids one centimetre outside your comfort zone.

Anyway. That was a bit ranty, sorry!

Guillty, what a shame about your closest friend and ds godmother. To think you actually cared enough about her that you chose her to be ds godmother then be let down must be heartbreaking. She doesnt deserve you as a friend and your ds is better of without her. Im same as you, re; always being referred to as special, even by my family. My sisters both say i could never cope you were specially picked etc and it drives me insane. They would cope, you have no choice, im not special im same as everyone else just looking after my ds because i love him and would do anything for him, same as everyone does for their dc whether they have sn or not, only difference being it is much harder with sn child.

YY wilson that's exactly it. Spot on

Thanks again shazian for your kind words. My mum has often said that things like this sort out the wheat from the chaff etc but tbh I often wonder if I just got the friends I deserved. See, the self-pitying probably got on their wick! And it hurts just the same if you're suddenly down several friends just because of a cruel twist of fate, even if they revealed themselves to be far from true.

I would have trusted DS1's godmother with my life...we were unbelievably close. And if she could do something like this to me I will never be able to trust anyone again. Or at least not my opinion of them