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Original poster

Tell me how YOU cope?

33 replies

TheLadyEvenstar · 13/02/2011 21:40

Because I am not doing so well.
Now we have a definate DX for ds1 I am questioning...

did i do the right thing
could i have prevented the aspergers
was it something i did during pregnancy
how do i retrain myself to deal with situations
how do i teach ds2 that it is wrong to copy ds1

How do/did you cope with these things?

OP posts:

mariamagdalena · 13/02/2011 21:41

Yes
No
No
Trial and error... more of the latter for me
Let me know if you find out

MummyO3 · 13/02/2011 21:44

hi V hope your well.

can answer anything better than mariamagdalena

MummyO3 · 13/02/2011 21:46

sorry should be i cant

pagwatch · 13/02/2011 21:51

You didn't do anything wrong and adjusting your parenting takes time and will be an unsteady process.

My epiphany was when I realised that it was. It didn't matter how much I wished it different, how much I wondered why, how much I cried and felt terrible. It still was.

And 90% of my sadness, my fear, my distress was that it was not going to be as I expected and I had no idea how to do this.

But then I realised that ds2 is lovely. He is happy. He needs what all kids need, consistency and love and structure. And gradually I realised that I could do this miserable and scared or I could do it happy and accept that it would not be perfect.

It also stopped me being a selfish twat, which was good.

coff33pot · 13/02/2011 21:52

No its not anything you could have prevented and yes you did the right thing in having your DS assessed as know he will be on a path to getting help :)

Everything is trial and error as every child is different and so need handling differently. You cope because you have to and your ds or dd needs you and that liitle bit extra energy you save up :o Some days are great and others..........well damn hard but you will muddle through.

I cant help you on the last one as my dds are a lot older than ds1 so I dont get the copying behaviour sorry.

There are courses you can go on that can give you ideas to add to your own. I have not been on any yet. Perhaps someone may come and post with a few links on some courses :)

Original poster

TheLadyEvenstar · 13/02/2011 21:57

Pag thats the problem I have you see
DS1 is lovely but he is unhappy so often and I don't know how to fix this!!!

OP posts:

supermum98 · 13/02/2011 22:26

Hi sorry you are not doing so well. I understand questioning ourselves 'did we do the right thing' ' did I cause it in pregnancy' is all part of grief and the bereavement process. I got stuck on that loop too when my son had meningitis and we were told he would be potentially seriously handicapped. He is not and they got that bit wrong. However, the first few years of 'will he walk', then 'will he talk' were agonizing ones, but not completely without some joy.
I think we always think we have control over these things but it is very unlikely you had anything to do with your childs aspergers, I suspect it was down to genetics, which we generally have no control over. I have learnt to live in the moment, very hard for a worrier. I read a book 'the power of positive thinking, and it talked about focus on the problems you have to deal with in one day and that is enough for most people in our situation. I don't think now about 'will he get a job', will he get married etc. it would weigh me down and as this book pointed out 95% of what we worry about never actually happens.

My NCT teacher helped me too, when I was questioning whether decisions I had made in delivery had caused my sons meningitis. She said 'even if anything you did led to this happening, which is very unlikely, you didn't want or will this to happen'. THis statement really moved me on and helped me to let me off the hook.

You need to look after yourself well at the moment. Enlist support of friends and family, it is a tough path ahead, but corny though it sounds, you will become stronger to cope with this, you will meet the most amazing people, who have huge amounts of compassion and empathy and people who are changed for the better by the experience you are going to gain, and you will make deep lasting friendships with people who are sharing your journey.

pagwatch · 13/02/2011 22:35

I know ladyevenstar. I'm sorry

I was just answering from my experience - our children are all so different.

The upside of ds2 being so very disabled is that he is blissfully unaware. But that is a good aspect of a bad situation. He cannot understand much, gets hugely frustrated, doesn't know even that my father has died and dad died 5 years ago. Every now and again he asks where grandad is. He will never be independent, never leave home and when I die he will be alone - and will think I have left him. I cannot leave him alone for five minutes and when he finishes school I will not be able to leave the house without him. Dh and I will never have a retirement, never travel as we hoped.

Our childrens stregths and weaknesses all differ and we have to find our way through that.

Focusing on how it could be different, why it happened justbtakes our energy away from how to try and be happy now. As best we can.

Original poster

TheLadyEvenstar · 13/02/2011 22:45

I wish I had your strength...

I am trying so hard to be patient with him, but I am noticing so much more - maybe because now I can't hide away from things. But my patience is wearing thin when I look at some things that I never saw before or maybe I was ignoring them?

I so desperatly want to have him sit in the room with the family and join in things instead he is off on his own in his room and I feel so sad, for us all but especially him. I hate to think of him being so lonely.

OP posts:

Original poster

TheLadyEvenstar · 13/02/2011 22:48

I want to be able to interact with him
and learn to be calm....or rather calmer.

I want to help him interact with others but he shies away most of the time....that or he is OTT and doesnt realise when others have tired of the situation.

I want to fix it all for him like I can a cut knee....but I cant so I feel useless.

I also feel cheated - i remember when he wasn't like this, I remember the little boy he was.

OP posts:

mole1 · 13/02/2011 22:51

I agree pagwatch. dd2 is also severely disabled - she will never be independent, we won't have a retirement and when I am gone, who will be there for her? If you stop to think about it too much, it is too tragic.

I try to take each day at a time and to be as normal as possible. It's not easy and not always achievable, but like you I am trying to be happy in the here and now.

Original poster

TheLadyEvenstar · 13/02/2011 22:58

Sorry I must seem pathetic feeling like this when your situations are so much harder than mine.

OP posts:

keepingthefaith · 13/02/2011 23:44

God, I so agree with all of you. Tonight I feel at the end of my rope, but I know tomorrow I will get right up and do it all again because thats what you have to do for the love of your child.

mole1 yes, you take each day at a time.

We are the chosen ones, chosen because we are the best they've got

Original poster

TheLadyEvenstar · 14/02/2011 09:47

I have an appointment at his school today, what do I need to ask??

OP posts:

IndigoBell · 14/02/2011 09:58

I hate to think of him being so lonely.

You are 'labelling' him as lonely. He might be perfectly happy upstairs by himself.

Just because you prefer social interaction, doesn't mean it is or isn't a good thing.

(Sorry, not meaning to attack you. Trying to show you a way of adjusting your thinking...)

Original poster

TheLadyEvenstar · 14/02/2011 10:07

Indigo, I know what you mean.
However he says he wishes he had friends to talk to and play games with....hence why I say he is lonely. But he loves his own company if that makes sense.

OP posts:

IndigoBell · 14/02/2011 10:15

I'm sure there are times when he is 'lonely' - particularly in school.

But at home, he might well be very happy in his room rather than socializing with his family????

I think you will have to adjust your defn of happy. Kids with ASD don't appear happy in a conventional sense, and in some ways can be very unhappy. But just because he is in his room does not mean he is unhappy IYSWIM

pagwatch · 14/02/2011 10:16

Thelady

I am sorry about my posting yesterday. I was very tired and not feeling well so I didn't really express what I meant to. I really didn't mean it to sound as if I was saying ' oh I have it worse'

I think your situation is so much harder tbh.
I have to deal with my sadness for my son but can do so knowing that he is oblivious to what the world expects of him. He doesn't struggle with socializing - he just choses not to or will behave as he likes completely disinterested in whether others are puzzled or not.

He also will never have to function independently because he simply can't.

Your sadness is all about your desire for your child to fit in, the have peers, to be liked.
I know what that desire is like because that is what I want for my other two who have no issues. Even seeing ds1 struggle because of the 'stigma' of having a brother who drew crowds when we went shopping was terrible. So hard.

Does your son know about his diagnosis. Does he have any insight into his own condition. I know that can help enormously having a friend who finally got his diagnosis at 24. He understood why he felt separate and he was able to explain his own reactions. That helped with his friendships.

Try not to feel so helpless. We all do - that is an over whelming sensation sometimes. But recognising that we can only do our best does take some of the tension and the pressure out of the situation.

You are short and impatient because you can't 'fix' him and that is so so frustrating.
But when you finally realise that he is not a child to be fixed but a person who will just be different it does feel better. Honestly it does.

Original poster

TheLadyEvenstar · 14/02/2011 10:51

Pag, he was in the room when we were told the final DX. Being 12 he was able to understand what they were saying/explaining to him better than a child of say 6. They also explained it to him fully and he came out of there happier than I have seen him in a long time.

You are right I need to realise he is not a child to be fixed - I think that stems from a few people saying "there is nothing wrong with him he just managed to convince the drs as he was playing along". Personally I doubt he is that manipulative.

I love him and want so much for him.
I need to pull myself together and put my sensible head on.

OP posts:

pagwatch · 14/02/2011 11:35

many heads sounds like an idea. I like my ' slightly pissed and the world looks rosy' head....

Original poster

TheLadyEvenstar · 14/02/2011 11:38

Pag, I may have to borrow that one!!

OP posts:

Spinkle · 14/02/2011 12:35

AS was once described to me (by a not very clever person) as 'a bit autistic'.

Stupid stupid stupid thing to say. You're either on the spectrum or you're not.

It's not just about being 'quirky'. AS kids realise very quickly they are not 'the same' as others. They are painfully aware of their differences but struggle to understand how to 'fit in'. They can play good game of appearing to be NT but they are not. They spend time angry, confused and trying to fit in. How exhausting is that? Many fall under the radar and so are not dx'd until later than other classic ASD kids.

As Indigo says, 'lonely' may not register or mean the same thing to him as it does to you/I. He could just mean that he wants to be like the others.

No he doesn't need fixing. He wants to be accepted as he is. He needs to accept himself too. Embracing his differences makes it much much easier to deal with.

zzzzz · 14/02/2011 13:26

This reply has been deleted

Message withdrawn at poster's request.

TooJung · 14/02/2011 14:13

About the retraining, I have found that I have needed to relearn ways of handling myself as well as the children.

Getting better at seeing how I'm feeling has been helpful. I started by wondering how I was feeling physically when I found myself sitting down. Do I need a drink, more heat, do I have an ache?

That has expanded to being more able to recognise my emotions, then to letting myself go through each angry, sad or confused phase quicker so I get out the other side.

I have altered how I use language. That is a very powerful tool. So 'DS2 really likes xyz burgers at the moment' is more positive than 'DS2 only likes xyz burgers'. It lets me describe his preferences as valid and personal.

I am then more accepting and appreciative of his ways and by extension of my own ways and varying emotions. We have moved as a family from the scary fast lane onto a peaceful verge, with forays into the slow lane when we fancy it.

mole1 · 14/02/2011 17:40

I'm sorry too - I certainly didn't mean it sound like 'we have it worse'. After I posted I thought it had come out wrong, but didn't know how to put it. I think all Mums try to 'make it better' for their children, but we just can't really achieve that. I guess we have to accept our limitations and that our best is absolutely good enough, even if it doesn't have the results we might want. I struggle with feelings of guilt, although sometimes I'm not entirely sure what I'm guilty about - could I be doing better, could dd do better if I tried harder etc etc.

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