Aspergers/ASD support thread

shazrobo

has anyone tried riding for the disabled as an after school activity?, my two love it, they go through their schools.
other than that they have no provision for anything after school for special needs kids where i live, until they are 12. joshua just started at the youth group yesterday for 3 hours, was lovely to have a bit of quieter time at the weekend, having just one child with special needs for a few hours is so much easier than having two.
sometimes i wish there were two of me so i could give them both the attention, they need so badly.

quietheart

This might be a tad controversial but have any of you experiencing sleep problems with your child considered melatonin? My son was prescribed it a few years ago because he was so anxious during the night none of us were sleeping and it was a major problem. The melatonin worked straight away and he went from waking upto 40 times a night to just a couple of times and now usually sleeps through. GP's can't prescribe it only paediatricians as it's unlicensed.

PasturesNew

I find my sleeplessness increases when I feel pressured to sleep 'properly'.

If I am, say, at the house of another person, or in any kind of shared accommodation, I sleep less well. Part of this is because I feel guilty about creeping about at all times of the night, or, if I daren't creep about.

I don't like feeling trapped in my room. I've always liked to be able to walk away from/out of anywhere where I am. On demand walk abouts. This isn't just a night thing, this applies equally well to if I am at work. If I am in a job where I cannot move from the desk, I get anxious/annoyed/frustrated.

Maybe you are making him feel it is wrong to wake up/potter about. Which, for a child, is true - because you are trying to train them to sleep all night and stay in their room.

So there's a conflict there. Maybe the pressure of knowing he can't get up is part of causing him to have more wake-up-moments than he would if he felt it was OK.

Difficult to balance that one out if so.

Savvy_Sue

I think that makes a lot of sense, PN.

Also, I hope you don't mind me saying, but I'm not sure being 'normal' is always so great ... Whatever 'normal' is.

I was always thinking my friend was a FAR better mum than me, she could cope with all the messy play, and she cooks better than me, and she was a SAHM whereas I just HAD to get back to work so as not to go insane! but then she cooked better than me before she had children, and I'm not sure she liked her job as much as I did mine.

So, even without the AS, you might still be discontented with yourself.

I find the fact that you're working out how to react differently to what people say very interesting, and to me that seems a better solution than wishing to be 'normal'. The chap we live with can also come across as very cynical and negative at times, but if I say that to him he very firmly tells me he's not, he's just being realistic. Which is fine: in his worldview he is just being realistic! I'd rather not see the world quite as bleakly as it is, maybe!

Savvy_Sue

I had some more thoughts about coping with difficult social behaviour, btw. I know that there's a limit to what you can do if a child hurts you, but short of that can you mirror their behaviour back? So, child comes up and thrusts face into yours, flaps hands and talks very loudly: thrust towards them rather than pull back, flap your own hands, and ask very loudly if they like being talked to like that? Disclaimer: I know this won't work for all children and could make things worse!

But same with the droning on: drone back! "I really am tired of hearing X drone on at me about this, she knows I cannot do anything about how unfair she feels it is that Y got to go to the shops and she didn't, and if I could do something to stop her feeling it was unfair I might, but as I can't, I am not sure what she expects me to do about it, and I do not think it is fair of her to drone on at me about something I cannot change, and if she would just stop and listen to herself for a minute she might realise that it is not very pleasant when someone drones on and on and on when there is nothing that can be done ...!" And so on, ad infinitum.

when they were younger, I used to start singing if one of my boys was whinging or crying and I couldn't work out why or get them to stop. A slight alteration to the words of "Oh dear what can the matter be": "Oh dear, what can the matter be? X is screaming li-ike a ba-anshee, we'll be here from Monday to Saturday, nobody knows what is wrong." Or the tune of "What shall we do with the drunken sailor": "What shall we do with the crying baby x3, early in the morning." Then a few verses of "Tickle his tummy still he starts laughing", "cover him with kisses until he stops crying", "cuddle him hard until he stops crying" etc.

Now, honestly, I don't have a bad voice, but they HATED this. Between the sobs they would beg me to stop, and I would sing "I will stop singing when you stop crying x 3, early in the morning." And as soon as their noise stopped, I would stop too. If they started again, so would I. I have NO idea what people thought as we walked along the street, alternately singing and screaming, but frankly I didn't care! :rotfl:

Oh yes, sometimes I would scream too ...

Maybe, blue-monkey, your son would stop that noise if it was mirrored back? Although maybe he makes it so he can 'tune out' and cope with the supermarket, so it may be something to live with. I'm about to send you a PM, btw.

Savvy_Sue

And another thought about "it's nice without X, isn't it?", especially for blue-monkey.

I'd say this was not an unusual reaction, even when the sibling does not exhibit much difficult behaviour (because in reality, all children exhibit difficult behaviour sometimes!)

It's possible that your son and daughter may benefit from MORE time apart than a 'normal' brother and sister would, but it's important to remember that even if your DS's behaviour didn't limit what can be done with all four of you, there would be times when she wanted to get as far away from him as possible. And vice versa. So right now I wouldn't worry unduly about that, you've got enough other things to worry about!

Hug, anyone?

studentphil

Savvy_Sue wrote: »

I think that makes a lot of sense, PN.

Also, I hope you don't mind me saying, but I'm not sure being 'normal' is always so great ... Whatever 'normal' is.

I was always thinking my friend was a FAR better mum than me, she could cope with all the messy play, and she cooks better than me, and she was a SAHM whereas I just HAD to get back to work so as not to go insane! but then she cooked better than me before she had children, and I'm not sure she liked her job as much as I did mine.

So, even without the AS, you might still be discontented with yourself.

I find the fact that you're working out how to react differently to what people say very interesting, and to me that seems a better solution than wishing to be 'normal'. The chap we live with can also come across as very cynical and negative at times, but if I say that to him he very firmly tells me he's not, he's just being realistic. Which is fine: in his worldview he is just being realistic! I'd rather not see the world quite as bleakly as it is, maybe!

I wouldn't say that having a bleak view about the world is just limited to AS style disability, I tend to find that a lot of disabled people feel that way as life is really frustrating.

Savvy_Sue

studentphil wrote: »

I wouldn't say that having a bleak view about the world is just limited to AS style disability, I tend to find that a lot of disabled people feel that way as life is really frustrating.

I'd agree with you, and it's not even limited to people with disabilities! I think there's a lot of mindset about it - there are people with a 'glass half full' outlook, and people with a 'glass half empty' outlook, and they're spread randomly throughout the entire population, pink, yellow, brown; gay, straight, either way; disabled, fit as a fiddle; sick or well.

studentphil

I think the striking thing with so many disabilities is that once you hit 16 you stop being disabled and you leave school and that is it. That is life and in everyone's eyes you should be able to be normal like you disability no longer exists.

studentphil

Savvy_Sue wrote: »

I'd agree with you, and it's not even limited to people with disabilities! I think there's a lot of mindset about it - there are people with a 'glass half full' outlook, and people with a 'glass half empty' outlook, and they're spread randomly throughout the entire population, pink, yellow, brown; gay, straight, either way; disabled, fit as a fiddle; sick or well.

I accept that and I am not sure why so many people are like that.