Feeling sad

[heQet]

Been waiting to post this all evening! Am alone now so free to post!

today my sis and her family came round. My niece brought a friend. My niece and her friend went to the park at the end of the street.

They are a year older than my ds1 (autistic)

He came downstairs, asked where they were and I told him they'd gone to the park. He asked why he hadn't gone too and I said because you need a grown up with you.

He accepted it, but I feel so sad I could cry. Sometimes I HATE the total unfairness.

Why MY kids. Why BOTH of my kids?

My sons should be taking themselves off to the park. having mates call for them. (having mates!). going to the shop alone. They should have the life of other boys their age. Instead they've got THIS life and it's NOT BLOODY FAIR!!!

And I've had to hold this in until there's nobody over my shoulder while I post it!

Need some - sympathy - wise words - understanding - examples of how it's all going to be ok...

You just caught me in the same frame of mind. My dd has different difficulties but was brought home to me again yesterday when we were in contact with NT kids at a party. My dd is none the wiser she is different (yet).

Wish I could say it will be ok but can only empathise - a lot!

Thanks minty. I don't often feel like this, but sometimes I feel so angry about it. It's not fair. They shouldn't have this life.

And I know there's nothing to be done, it is what it is an we play the hand we're dealt.

but sometimes, just sometimes, it's so bloody hard to watch nt kids going about their life.

It will all be OK as it becomes less raw. New things come along and hit you in the stomach with the unfairness, but you learn to either accept them (99%) or find a way around them.

I'm being a hypocrite though as I feel the same a lot. It really really isn't fair or OK.
I have to try to find the silver lining e.g. at least he won't be out taking drugs or getting girls pregnant (2 popular local pastimes for teenage boys round here) but I too would prefer the normality, for him (not the drugs bit, but the independence).

I'm trying to get him into more social stuff that he can access. There's a SN music thing that involves making films and stuff and then he can have other activities to fill the time that his mates spend out on the street playing football.

Sorry, probably not helping. Just trying to say I understand!

lots of sympathy your way, i had a day like that the other day, felt like i had been punished, wanted a "normal" child, and i know i will feel like that again very soon, it is hard to accept and its not fair, i dont have any wise words as fairly new to special needs but reading threads on mn has given me so much strength, and helped through a bad day just by knwng other people really understand ad know what im going through. your not alone hun giving you big hugs and hope you are feing bit happier soon xx

I'm in the opposite situation (I hope you don't mind me commenting)

DD had just started walking to the local post office & today she couldn't go by herself.

It's the powerlessness I feel that I can't cope with & I've only had a week of this

I can't imagine being in the position where my children are so confined/isolated

Again I'm sorry if I'm intruding

'Why MY kids. Why BOTH of my kids?'

No reason at all. You've been dealt a crap hand that's all. You don't deserve it. You did nothing wrong. But the crap hand is the disabilities, not your kids. They are lucky to have you, and although it doesn't always seem like it you are lucky to have them.

Look at your neice, and her friend. As much as you might like them very much, would you ever swap YOUR children for them? Nope, - because YOUR children are the best that's why, and just because you have to do things a little differently, and your life is harder for it, it is soooooooooo worth it!

kinda know how you feel, ds is nearly 6 but really physically disabled and pretty much non verbal so probably wont ever be out on his own.

the kids in the street are lovely and always run over to say hello to him and have asked a few times when will he be able to come out to play, one wee boy keeps coming to the door to ask if ds is coming out or can he come in and play.

its really lovely that they do this but they wouldnt be able to look out for ds i dont think, although i think in the summer i will try and do something in the garden that can include them all.

i darent let ds out of the garden with them on his own as we stay on quite a steep hill with a road at the bottom and i have visions of ds rolling past the window with a gang of kids running after him!

thanks pokhara. mn really does help, doesn't it?

Giveme - does it ever feel less raw? I can't imagine a 'normal' stage in their lives.

When other people their age go to university, get married, have a home, have kids... my children - what about my children?

I sound so self pitying. me me me me me. It's not about me, is it? They're the ones with the autism, not me. I've got my spouse, my home, my kids. I know I shouldn't make it about me, how I feel. That's selfish of me.

I just feel like they've been robbed, you know?

don't mind at all Katy - all perspectives welcome! I know there are things other parents fret about that I'll never have to worry about, and mostly I feel it probably evens itself out in the worry department

TheMD-yes, you're right. My kids are bloody fab.

glittery, that image made me smile.

The other kids are kind to my boys, but they've not got mates and I fear they are too different to ever have proper mates. Being kind to someone is not the same as being their mate, is it?

What I find the most difficult, isn't the here and now, but the overwhelming fear for my ds's future. If someone could reassure me, or take away that fear, my life now would be immeasurably better. I would still work as hard as I could to get him to reach his potential, but I wouldn't be panicking about every lost opportunity etc etc.

I know what you mean TMD. I sometimes just cry, all on my own, when I think about their future. What if they're lonely? What if they want to be loved but never find anyone? What if some horrible sack of SHIT takes advantage of them? What if, one day, they're all alone in the world? What if they're unhappy? I think I'm going to cry

ARRGGHHH I have to snap out of this mood. It does no good at all to wallow.

Sorry, that post of mine wasn't very helpful was it.

Are you children having happy childhoods? Loved? Cherished?

If so, they are actually a lot better of than a good many other children in the world.

((HUGS)) I know exactly where you are coming from..
My DS2 is nearly 13.. never been outside by himself. Ever.
Not that he wants to, but he knows that other children do, hell some of his class mates ride bikes round town (all MLD/SLD) !

I try to NOT think about it..about what his siblings were doing at his age ..calling for their mates, playing out, chasing girls etc etc and the fact that he doesn't seem to mind doesn't make it better.

However there are plusses.. he is happy with his obsessions, he does attend a drama group with mainstream kids, and is accepted there.. he doesn't KNOW how different he is.

And given that I scraped my DD2 blind drunk on her 13th birthday(never did it again she was grounded forever lol), and some of the issues I have had with DS1 over the teen years... sometimes the limitations don't seem so bad... some days!

Hang in there...

Oh yes, they are much loved! They're wonderful boys. I love them so much. So does my husband and our families.

At the end of the day, it is what it is. tomorrow I'll be fine. Just having a bad moment.

i'm with you all. making me cry too. Imagine having the normality, Sometimes I hate the people with 1,2,3,4, children, no SN. It must be so easy and normal for them and it's so hard and sad.

I can join you heQet. DD1 used to be invited to my friends' children's birthday parties. They are turning 5. DD1 is 4, so close in age, chronologically. This year DD1 didn't get invited to one friend's party (also happens to be her cousin). Nothing was said, I just realised that she wasn't invited. Later I was told it was about their "stage".

Her other 'friend's' birthday is in a few days time. She has been invited the last 4 years, but not this year. Again, I haven't been told, just realised that indeed my friend's daughter will celebrate her birthday, and I haven't been given an invite, so DD isn't invited.

On the one hand I do know that there is nothing remotely similar about my darling 4 year old and these lovely but NT 5 year olds. But I ache for her. And for me

It is worse because DD2 is starting to go and play at the cousins house, as she is the same age as the younger cousin (2.6). So where does that leave DD1? Too old for the younger cousin (although developmentally younger, if I'm completely honest), and 'not NT enough' for the older cousin.

Not their fault, but I feel lonely for her, and the poor mite is only 4.

Oh fuck it, - I'm opening a bottle of wine.....

There are many different paths to tread and different people who walk them. 'Normal' is an illusion and so is 'Fair'. They'll find a way with your love to support them and you'll probably discover you're actually stronger than you ever dreamed. I've a boy (a young man really now) who has never walked and that's not all. He could never sleep over and most of his infant school friends melted away when they got into football. People are friendly but never close. It's the wheelchair. No one would admit it, but it puts them off. He's my best mate, really! is that normal? Who cares! we're a team and we're too busy changing the world together to notice things that have become normality to us now. We've found a path that works, for us, for today. It's good but it was'nt easy, some things take a long time to accept but in the end they become part of who you are, and that's more than what you were. I don't pretend to understand your pain. I know for myself that when someone claims to, usually they've already demonstrated that they don't. I have my own grief however, which has led me to envy others sometimes .... until, that is, their perfect kid dies young of cancer (it happened). That's when you wish you hadn't and realise that most people have their cross to bear at some point or other. All the same recognise your anger, find a way to let it out somehow. There's nothing to be ashamed of just because others have problems. It's natural. But then try to let it go for a while or it will eat you up and make you sour. The clever trick is not letting it out in a way that hurts other people (even if they sometimes seem smug or stupid). I try, but I can't deny that I've failed too often. That's humanity.
Guess what? My boy works alongside Autistic pupils as his job, especially in IT. I would never have dreamed of it. Who knows what yours might do some day? There's room for all kinds in this world!

comes in and drains the dregs from the tmd's bottle

heqet - i could have written your post. ds is only 4 but i'm full of fear and foreboding which i try to push down to live the day to day with my gorgeous boy.

I think every now and again you are entitled to think about yourself - you are entitled to have hopes and dreams of your own. right now i'm too ground down by work, trying to get a dx and statement and my toddler not sleeping but i do want to have a life one day!

lou - can't believe your dd didn't get an invite to her cousins birthday - are the parents' hearts made of stone?

I only know a few people locally with kids - nct friends and so far ds has been invited. But i know as the kids gets older it is often left to them to decide who to invite so this might be his last year of nt parties.

Maybe if i keep throwing parties for ds and inviting loads of kids i'll the parents into inviting my son! [pushy parent emoticon]

It is difficult and sometimes little things happen like todaythat for you just bring home to you how bloody unfair things are.
No wise words but stuff mumsnet ettiquete(sp)
hugs x
I was walking down the road today with my ds in his w'chair with him pointing and sshouting to go to the park, he is non verbal and has severe autism btw, had to say no as I can't mamage him alone anymore.
Out of this car gets this bloke and his 3 lovely girls all singing and laughing off to play and I sobbed in the street after we walked past them.
It is ok to feel shit sometimes because life is fucking unfair.
Hope tomorrow is a better day.

Thanks folks! Feeling much less sorry for myself today. Sorry for the self-pitying moan. I hate it when I do that.

re the parties - mine miss out too. ds1 more than ds2. And I'll never forget the party I had for him when we lived down south. I invited EVERYONE from his class.

One person showed up. I had a big cake and piles of food waiting there.

bastards. Total, utter, callous bastards.

It was years ago and I am STILL so angry about it!

But, onwards and upwards! Had a VERY good 10th for him, with the much kinder people up here!

It is shit and you DO have a right to feel bad for yourself and the whole situation. In fact, I'm sure it does you good, that's where MN is invaluable. I think it is very hard when you don't have any NT kids as well as your SN ones, lots of people can't understand how different that is. I think you are doing great just by thinking all this through and giving in to it, even for a little while.

The wonderful thing about MN (she says as a complete newbie) is that here we don't have to be saints. I walked out of the school playground this morning saying 'ok deep breaths, breathe the tears away' because it would be too shaming if I didn't have a brave face there. But there has to be somewhere we can be angry and sad and scared or we'd all go mad. It is so unfair and I for one need to howl about it sometimes in order to put the brave face back on and carry on out there in the world.

oh heQet thats so awful we would have loved to have come to his party if we lived near xxx

A friend of mine has a 22 year old son who has autism and now lives in sheltered housing with other young people like himself. They have live in counsellors who help them live protected but normal lives. It was difficult to make the decision for him to move away from home but it was absolutely the best thing for him and he is happy and settled there with lots of activities and friends. He is still autistic and has all the same obsessions but my friend can see the improvement.
At her daughters wedding recently her son gave a speech and there wasn't a dry in the house!
There is a future and a life for SN children, try to have that faith.