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!

Don't feel guilty. Why should you?

It is awful. It is unfair.

We dont do much as a family. It's just not worth it.

I'm learning o be kinder to myself, and to be kinder to them. To not expect the kids to behave, walk etc when they can't.

It can be very frustrating. And guilt inducing as well.

As far as going to see Father Christmas, we went mid-week, right as the shops were opening, around 10:00-10:15am. It was the only time of the day that DS2 could cope with it, as there were no other children present. We've learned from past experience that going when it's busy does not work. I know that's difficult for some due to work schedules.

Thanks Indigo

The only problem with accepting DS1's limitations (which obviously he can't help) is that that would mean staying virtually housebound in the school holidays. I can't take all 3 out by myself and dh can only take so much time off work. Some people I know in a similar position can afford au pairs etc. Now that would be perfect if only it were feasible

It is unfair, it is frustrating, and it breaks my heart at times.

I'm going to add to your list and say it can be embarrassing at times too.

I haven't cried so much in years as i have this past few months, mostly at small milestones that i thought were 'normal' (apols for using that word, but i don't know what else to use)

DD waved at the poorest-dressed Santa i've ever seen and that made me cry, she said it was OK as he wasn't the real one

DH and I had planned a lovely trip to a great Winter Wonderland event, with a great Santa. We didn't go, DDs face was horrified when we suggested it. We went to the woods for a Christmas walk instead.

Don't feel guilty, we all go through this.
I feel like this at the minute,too. We always go to hell and back with dd1 (AS) when the Christmas and New Year festivities give way to 'normal' life again. She really struggles to cope with the change in pace, even though we do our best to make the transitions as smooth as possible.

I'm feeling really flat and anxious, because we have some difficult times coming up for her (eg SATS at school) and I feel so guilty because I'm wishing it didn't all have to be so bloody hard.

I've felt like a hermit these past two weeks, because we just can't go out and about at this time of year, the crowds are just top much for her.
Sorry, can you tell I'm not feeling the New Year vibe?!

Can you afford a teenager to babysit occasionally in the holidays?

Do you have any family who would do a few hours?

Can you go out in the eve when your DH gets home?

Can you invite any friends over?

dont feel guilty we all feel like that sometimes x

I just get used to going out in the evening for walks rather than during the day. Or if it is day time then its as far afield away from people and crowds. DD goes and does things with friends and their parents instead so she doesnt miss out on the normal childhood stuff. The only thing ds loves and doesnt stand out a mile or scream is soft play because he can charge around alongside people but even if in overload it doesnt look obvious he is roaring and leaping as its is expected in a place like that.

Santa trip was ok this year purely because we got their early and left before crowds came.

It isnt fair but its the way it is so I dont get so upset about it anymore and after a while it becomes the norm.

Thanks everyone for your comments, it really does help to know I'm not alone. I guess I've always thought others must feel like me from time to time but it seems to be a bit of a taboo in the SN world, to admit that sometimes you resent how your life has to have that extra layer of difficulty. I've always felt you're supposed to feel 'blessed' and to act like the 'special' mother you've been called on to be.

I'm not special. I wasn't imbued with 'special' qualities of anything but anxiety and stress when DS1 was diagnosed.

And I don't always feel like this, DS1 can certainly be a joy, and he could be a lot worse behaviourally etc. But as you said, tooearly, sometimes it just gets to me and I can't escape the feeling of sadness and yes, bitterness.

Indigo: only my mum around to help, she still works full-time and is only willing to do a couple of hours at most (whole other thread)

Babysitter would be ideal, but couldn't afford much and it's finding someone I'd trust.

I do go out in the evening, and take my oldest out at weekends etc...it's more during the day in hols that's tough. And not being able to do things with the NT kids and DH (that DS1 wouldn't be able to do but which are considered simple pleasures by the rest of the world).

And I do invite friends over but DS1 won't interact with them so just glues himself to his ipad and then goes stir crazy after a while. He really needs to get out at some point in the day. Also not too many friends understand what it's like in our situation, which is frustrating.

Bum bum bum

I want my career back! I worked damn hard to get where I got and now fear I may never get back to where I was (IT - unlike the sen industry keeping up to date with new developments is critical, one of the reasons I enjoyed it!).

Not working 2 out of the last 3 years has really got to me sometimes. Perhaps if I had a partner to help reduce the sense of isolation/financial stress it would be easier but essentially I knew from 6 I never wanted to be a "housewife" and my recent experience hasn't changed my mind! I enjoyed the mental stimulation, adult company, social life etc that wrok gave me and bloody miss it sometimes!

I get raised eyebrows from the professionals (on their £60k+ salaries!) every time I mention wanting to return to work as if it makes me a bad Mum, yet as a single Mum of one 7 year old isn't that what the wider world accepts as the norm? (Certainly the benefits agency thinks so and is one of the few official areas of support for me on this dark desire of mine lol!)

I get it.

Its bloody hard sometimes.

I want to go back to work but need to re train and how would ds1 cope???

sigh.

Cant do cinema, cat do pantos, cant do most of the things other families do. It hurts sometimes.

We have a very limited family life due to dd's OcD. Nothing as bad as some of your situations I know, but I sometimes wish we were a bit less dysfunctional.
DD cannot do holidays. At all. We have wasted time and money over the years and have finally decided that is it. No more trying to do it as a family. Consequently dh and ds are away at the moment...we have been on our own since Xmas Day.
GCSE's soon...she is panicking already about upcoming tests. Interestingly she has been a lot calmer since we have been alone.

I am very lucky in that I have a great job, nice home, financially secure.
But I get very jealous of my friends "perfect" lives, and have actually become a bit of a recluse as they have no idea of what life at home can be like...dd is very smiley and sociable, but of course we get the meltdowns at home.

I have decided to stay very calm and composed as much as I can , but have times when I think I didn't expect life to pan out like this.

Here's to a positive NY and thank god for mumsnet.

It is very frustrating to be so limited but I try to console myself that a lot of those things (visiting santas grotto, shopping etc) are rubbish anyway.
I did 90% of my shopping online this Christmas and just went to one lovely independent gift shop (on my own) for everything else. We didn't even contemplate visiting Santa at all.
Christmas is always one of the most challenging times for us because ds gets very worked up about presents. He has (awaiting dx) pathological demand avoidance so all the anticipation that nt children enjoy is like torture for him. Father christmas is the ultimate controller.
We keep Xmas off the agenda entirely at home (no advent calanders, no mention of it and no decs until 2/3 days before, no commercial tv) but school seem determined to whip them all into a festive frenzy regardless.
The things that I am finding useful at the moment are as much outdoor exercise as possible, (soft play is great for us too when weather not good)
Play fighting/wrestling is good, I get him to arm wrestle or try to push me over that helps to get the grrrr out of him. It's a good opportunity to give lots of sensory stimulation too.
The library is good for ds, most are not bothered about children making noise these days and ds loves books so always enjoys it. It's also a low stimulation environment if they're easily over stimulated.
We have to keep our iPad hidden and we put our wii away long ago as any kinds of computer games bring out the worst in him.
I find having a plan always helps me cope. Make a list of things that you can do with him and some you might be able to if you modify it or make some preparations beforehand. Then try spreading these activities out so that you have something small to do each day.

Leningrad, I am with you there. We have lost a lot of friends over the years.

Although our remaining friends are lovely, I still feel terrible about not being able to repay their hospitality and invite them over-but it would just be too stressful; dd1 simply cannot cope with their younger children in her home and the fear that they may touch her possessions.

We took up our own business to work around DS thinking that was a good idea instead of being constantly frowned upon because of many appointments and sick time off etc. It works....................but it is still stressfull.

DH and I take turns in shop which is fine so that someone is always home. DS is part time and so anything that needs doing has to be in the morning and we are on constant standby for school phoning to pick him up early. There is not a lot you can do in 4 hours apart from a couple calls and housework. The rest of the day is constant DS. Then the night work begins as we cannot afford accountants/bookeepers etc so we do it ourselves and very rarely DH and I get to bed before 2 or 3 am. DH is up at 5.30 am for usual start of day and I am up not much after that. We have a house to pay for and a shop to pay for and the recession is hitting us bad and there is no way out as no one will pay it for us.

So its the stress of being behind all the time, paying the tax man on time the VAT on time, none of this ever happens and so we pay fines. Business calls, customer calls and on top of it all trying to get someone to take us seriously and dx our child and finally help us to help him let alone battle with LAs etc.

So all in all we live in a nightmare too. Its amazing just how one little boy can distrupt the whole of lifes choices that you made for the future but we love him and neither he nor us can help that as its just the way it is and hopefully it will get better in time. I dont lay blame on him though I lay blame on services, NHS and proffessionals. His meltdowns are pussycat stuff compared to the amount of time we have spent endlessly arguing, begging and demanding. It is THAT that drags us down :(

this thread has made me cry feeling tearful today.

Friends are non existent. DH and I are so lucky that we have each other. And yes thank goodness for MN :)

yes corn its made me cry too now lol Reality is definately shit sometimes hmmm?

I'll have a good cry now while dh is out with ds2 and get it out of my system I think! ds1 is on his games - he won't notice

Yup. It made me sad too.

We can't do all the stuff other families take for granted either. For the first time this year DS (7, ASD) looked at Santa and even introduced himself. I wasn't here to see it (Santa visited school).

He didn't want to be in the school play

It gets to me. It gets to DH. We just have to take the good stuff and happy times when we can. But it's sodding hard.

I take some comfort in the fact I am making life better for the ASD kids at the school where I work.

dh and I are finding it very hard atm.

I know I wont get flamed here but we have to co sleep with ds1 still - he is 8.5. Dh and I are like ships that pass in the night tbh.

Ds1 is starting a new regime/therapy which we are pinning our hopes on and we hope to introduce a new nightime routine after he has been on that a while.

Its not too bad as I sleep with ds2 (3) an dh sleeps with ds1 so we all get a decent night but its not how its supposed to be is it?

No doubt we will be going to the same cottage in N Yorks in July as we have for the past 4 years....sigh.

Could be worse I know.......

This time last year we had just gone through a similar time to many of you. However, (hoping this will encourage you) both at home and in school we've seen a major turn around for the better since August. DS is now 10 yrs dx AS. It's not perfect, but we've had a fab Christmas, DS visited Santa for the first time (with the school so we didn't see it ) and we've just been at a family event in the centre of the city for a short time. We've just taken 1 step at a time, done what we can when we can, hidden at times and seen an improvement with age.

I think that most of you have a harder time than we do, though when I think of it compared to an NT family it's still pretty hard. All of us can do it and we keep on keeping on because we love them. It's so hard at times and tears fall and it feels very unfair, but it can get better. We're seeing some of that now.

I had to show this thread to DH, not often do I read an OP that I could have written word for word.
New year is particularly depressing for me, it used to be the one night of the year with a guaranteed party, but we don't have a social life now.
As ds1 grows we are finding it harder and harder doing things as a family. Although we have developed a thick skin for meltdowns!

I desperately try not to deprive ds2 (nt) of experiencing things and occasions but doing it without ds2 just seems wrong and unfair.

dH and I are so tired because ds1 wakes up at ridiculous hours, we even tried co sleeping, but didn't help. I was out in th car this morning at 4:15 driving him around so that he could sleep a bit longer and avoid a meltdown later on due to tiredness.

Anyway! On a positive note, we took him to his very first panto today, and it went very well! So I have hopes for 2012