He tries so hard..

[Brook]

Hi all,

 

I've been thinking about this alot the last few days, dont even know why I'm posting it because

I'm not after advice or anything, maybe I just want to share it.

I've come to observe my son more in stressful situations, so that I have an idea of what may be

triggering anxieties or upsets, it really dawns on you sometimes how hard he has to work just

to do the everyday things that NT kids take in their stride.

An example:

 

My son copes reasonably well with birthday parties, or so I thought, but the last one I took him to

made me realise just how much effort he has to put in to cope.

 

I took him to a little girls party at M*donal*s, he was very excited all day about going, this alone is

enough to stress him out. He had his own party there last year and he expected this one to be

'exactly' the same, but it wasn't, they did alot of things in different order, he kept asking 'why arent

they doing the pass the parcel now'? etc...

 

Anyway, they played a game of 'what's the time Mr wolf', (I was glad they played a game that didn't

involve one child losing!). All the kids were shouting 'what's the time Mr Wolf', above their voices you

could hear my son saying it a few seconds after, his voice was more wooden and sounded like

the kids voices you hear shouting out on a tv pantomime, more rehearsed, he kept looking at what

the other kids were doing, and when the kids started laughing, my son would laugh very OTT and

it stood out a mile, he had an uncertain look as if to say 'I dont know what the hell youre laughing

at, but this must be something I have to do'.

 

As time went on, I could see that this 'conforming' was really starting to drain him, and the little things

that trigger him were becoming 'very' big things to him, ie.. his meal didn't come in a box etc...

things that he expected to happen so he could keep some order were not happening and sending

him into panic and confusion.

 

Well, in the end they played pass the parcel, now, they rig it so the birthday kid 'always' gets the

main prize, my son won the main prize on his birthday, so expected it this time, also my son cannot

bear to lose at games and has an extreme reaction, I said to him that the birthday girl would win the

main prize and he should try to just clap with the others, but obviously he was already drained and

anxious from the whole experience, and when the little girl won the prize you heard an almighty

'scream', my son came running through the room holding his head shouting 'I hate you ****,

I want you to die', (the little girls grandmothers face was a picture of shock and a little disgust,

although she never said anything, well, not to me anyway).

 

Luckily this was the end of the party, he was totally and utterly drained by this time, he was still

shouting when we were getting in the car.

When we got home my husband said "did you have a good time"?

my sons reply was "yes dad".

 

In these situations, it really brings it home to me how much effort he has to use, and I can only

imagine what this sort of pressure feels like, it must be totally deflating.

I suppose others observing him would think what a 'brat', but with knowing what is behind the

triggers and how much harder he has to work, I have developed alot more understanding of him.

 

I dont know why I posted this, but I'd better stop now otherwise it will turn into a book.

just wanted to share a 'very small' example of the everyday things that other kids can 'just' do,

that my son works sooooo hard to do.

 

Brook

Edited April 14, 2006 by Brook

[Guest hallyscomet]

Hi Brook,

 

<'> <'> <'> <'> <'> <'> don't know what to say, but just remember you are not alone...... we have all walked in those shoes and know how it feels when those eyes glare at you, for something your child has done, but cant be helped.

 

I think the thing that hurt me the most is that B stopped being invited to birthday parties,....quite blatantly all the kids would be invited except him.....

 

<'> <'> <'> <'>

 

H.

[DaisyProudfoot]

Brook,

 

Thank you for this post. It has really helped me

 

I was just going to post one of those "rant" posts about my own AS son causing absolute mayhem this morning trying to get him out to school (yes we're still there! ) - screaming, swearing, accusing me of 'child abuse' because I touched his shoulder to get the car keys off him, well you know how it goes......... when you posted this.

 

I know he's going through a lot but sometimes I just don't understand my son

[mossgrove]

Thanks for posting Brook.

 

It is one of the reason that our children are so tired when they get home from school.

 

Simply getting from one end of the school day to another without major incident is something that NT kids can do with relative ease, but our children find very tiring and difficult. Sadly many teachers do not understand how indroducing changes without proper preparation can make a difficult situation untenable.

 

I agree it is hard when they don't want to go to school, but I can understand why.

 

Simon

[Brook]

Hailey, I know I'm certainly not alone. it's really sad when they dont get an invite isn't it,

but sometimes I think am I taking him to these things to enjoy himself (which parts of it he does

enjoy) or is it just because it's the done thing, also to experience these things.

 

Daisy, sorry if I stopped a rant in it's tracks. rant away.

 

Simon, as you already know I took my son out of his school, with hindsight he must have had

a very draining day 'everyday'.

 

Thanks for replies, like I say I dont know what made me post this this morning.

 

Brook

[rainbow queen]

<'> <'>

that was very well written brook -i can see all those things in my son when we go to things/socilise/ect......

 

to everyone else they cant see those things-just shows how much runs through our minds when doing simple things and the range of emotions that occur in our minds as parents when we do the so called normal stuff what other folk take for granted.

[bugbug]

Hiya Brook

 

Could have written that myself. I watched last time my son 5 went to a party at a friends house and he stands out so much differently whilst being at times invisible.

 

bugbug

[Tylers-mum]

<'> <'> <'>

 

Thanks for posting Brook. Truly was an eye openner.

[Brook]

to everyone else they cant see those things-just shows how much runs through our minds when doing simple things and the range of emotions that occur in our minds as parents when we do the so called normal stuff what other folk take for granted.

I'll second that RQ.

 

Brook

[oracle]

It's taken me all day to post a reply here because I soooooooooo identify with this at the moment and I have been feeling pretty down myself today.

 

I realised last night just how hard Matthew is trying at absolutely everything at the moment but that he is having a really hard time doing so

 

He and I had a really gut wrenching talk at 1am this morning which left me in floods of internal tears - I did not dare cry while he was talking to me. But it was not easy listening to him tell me that sometimes he thinks it would be better if he was not here and dead instead

 

So have some of these Brook because I know where you are at right now <'> <'> <'>

 

Oracle

[jayjay]

They made me think so much about what my son is like at these partys, i take him because he is so excited about them but by the end he is anxious and stressed and obviously gets to the point where he cant cope with the pressure anymore it is just so heartbreaking to see, as you feel like you are out of your depth with no way of helping them <'> <'>

jayne xx

[Brook]

He and I had a really gut wrenching talk at 1am this morning which left me in floods of internal tears - I did not dare cry while he was talking to me. But it was not easy listening to him tell me that sometimes he thinks it would be better if he was not here and dead instead

 

 

 

Oracle

Oracle <'> <'> <'>

 

That really brought a lump to my throat.

 

Now I'm begining to realise 'why' I posted this today, because sometimes it's good to take

a step back and try to be the onlooker, which isn't easy when you are sooo involved day in

day out, everything can become cloudy and rolled into one and you end up in a muddle.

 

Does that make sense to anyone? probably could have worded it better, but YKWIM, dont you.

 

Thanks for your replies all, it's good to share things and relate.

 

Brook <'>

[Guest hallyscomet]

I realised last night just how hard Matthew is trying at absolutely everything at the moment but that he is having a really hard time doing so

 

He and I had a really gut wrenching talk at 1am this morning which left me in floods of internal tears - I did not dare cry while he was talking to me. But it was not easy listening to him tell me that sometimes he thinks it would be better if he was not here and dead instead

 

So have some of these Brook because I know where you are at right now <'> <'> <'>

 

Oracle

 

Carole

 

Carole & Brook <'> <'> <'> <'> <'> <'>

Carole,thank god he opened up to you..... B. has been like that too..... it lets you know where they are on the Barometer. On the weekend my partner and I had visited a favourite headland only to find a huge bunch of roses and a memorial for a boy that would have been 19 today. A picture of this beautiful kid. I knew him... and was thinking about him as we were walking to the lookout/blowhole and was surprised that he would have been 19, he used to be involved in wrap dancing at my daughters dance school. So was shocked when I saw the flowers. Sorry there is a point to this, another time years ago, two teenagers Year 12 students from a Private school held hands and jumped off the Sydney Harbour Bridge. Apparently there parents were pushing them too hard to achieve and be successful at their HSC.

These unfortunate situations stick hard in my mind, so whenever I see B's barometer is like your sons were Carole, I always thank God that he felt able to talk to me about it. I think its the kids that their parents don't listen, are the ones that harm themselves. <'> <'> <'> <'> I will never push B too hard, and I always look out for him when those times are there and reassure him that if computers are not your thing at the end of the day, there are many other things out there that you can try and possibly enjoy more.

 

I was at the counsellors with J yesterday and they had a brochure for Trade testers that sounded really inviting and I put this in front of B yesterday and it brightened him up, he said I like the look of that. I have been putting ideas in front of him for months...... but not pushing him as it scares me when like you Carole they come out and tell you how they are feeling, and you just give them a big hug an know, you just have to be there for them. We got so much support from the Paediatrician through these times too so the teachers would back off and stop look and listen, as they were huge contributors to B feeling he had no way out!!!!

 

Thinking of you both today, and hoping tomorrow is a much brighter one for our children.

 

<'> <'> <'> <'> <'>

Love

Haileyx

[LKS]

Brook <'> Reading your post just made me remember again what our children have to go through each and every day. My 11 year old as ds, will not go to parties (not that kids of his age have many now) but he also doesn't like celebrating his own birthday He is getting to an age now where he understands the unpredictability of certain events and prefers to remove himself from them. As Simon said this is much like they have to go through every day at school. Oracle <'> <'> for you and your son.

[lisann]

Hi Ya all

 

At what age would you say your children satrted to stick out within there age groups???

 

Char is four and half and I too have started to notice he now sticks out more than he use to .

 

Will he stick out even more as he gets older????

 

 

 

Lisa x

[Brook]

Hi Lisa,

 

I can only answer in the case of my son, but I think when he was a toddler and in a group of children,

there were certain things that I would pick up on, but weren't necessarily apparent to others, as they

could put things down to general toddler behaviour.(my son was dx at 4yrs old).

 

I think when he reached about age six, things started to show more when he was with kids the same

age. He is seven and a half now and is quite tall for his age, so I think that adds to it.

I dont know if your son will 'stick out' more as he gets older, but in my sons case I would say he does.

 

Brook

Edited April 12, 2006 by Brook

[OPooh]

Thanks for that Brook I really saw my son there. Have been having people say how "mild" his disability is lately and that shows even more that it's not it's just more hidden.

 

Glad he felt he had a good time at the party

[Kathryn]

Brook,

 

I so identified with this - thanks for sharing it. You've described so well the incredible pressure our children are under at these social occasions. I could never understand why my daughter used to hide in the toilets at parties.

 

Lisann, I've thought about your question - L. stood out from her peers right from the start - there was never a time when I thought she fitted in, except briefly when she was around 13, but it was an illusion - she was trying her utmost to copy everyone else.

 

K x

[Melow]

My son has huge issues trying to 'fit in' usually he adopts the shutdown approach, goes quiet, takes a game boy with him, and switches out. Children being what they are, approach him to join in, and he won't even look at them, if they persist then he can react by spitting or throwing things at them. When he arrives home afterwards he is like a coiled spring, and will explode everywhere, he will talk and rush about, put another stranger in the room a different story ! The school tries this by adding him to small groups, it still doesn't work, it's one-on-one or nothing, so, nothing usually, they haven't the staff, and are hell-bent on 'inclusion' policies. He does get very stressed out in any type of group, sometimes he will try to see what is going on, and 'circle' those playing, but any attempt to include he's off. It has to be entirely on his terms.

 

I talk to him ask why he doesn't react to the other children, he just says I don't know what to say to them, I suggested he ask their names, give his, that's a start, or tell them about his gameboy which he is an expert on ! he says then what ? what if they ask me something else I don't know about ? He wanted me to accompany him as some sort of translator/backup, I told him it doesn't work that way. He has considerable difficulties holding any sort of conversation, to be left with another couple of children for say a half hour, would be an entire lifetime to him, and he would get very stressed about it, he just does not relate to them. I'm coming around to the view he will always be this way.... the worry is, what happens if I am not about ? He really does not relate to anyone else.