Aspergers/ASD support thread

Snaggles

kit wrote: »

it makes my head feel strange like a build up of pressure or something (so hard to explain)

Ryan describes this feeling as his 'brain turning in lots of different directions, all at once', and when he says it, he clenches his fists, so I can see how angry and frustrated it makes him.

Duchy, it's funny how many of us feel that way underneath isn't it? All my life I've thought I was the only one who thought the way I thought! Now so much of it is starting to make sense. Think you deserve a small (((hug))) (small because I don't want to overwhelm you and make you feel uncomfortable.....lol ) for saying it.

Snaggles

blue_monkey wrote: »

have spend this afternoon trying to explain to my husband that Ryan and his train obbession is something he has to get used to, they have to be going to the right way, the track has to be set out the right way (LOL, we took pictures of it so we know how to do it again) and that he would have to get used to it. he sets it up for hours and then the trains just got around and around until I turn them off and he goes nuts over it. Whatever though, you just get on with it.

My Ryan is very similar to this, although he does remember how he likes things to be set out, so at least WE don't have to remember it!

You said you have a problem with stopping the play when it is time to do something else - have you tried 'start' and 'finish' boxes? Basically you have 2 small boxes (we use those clear plastic ones you get take-aways in), and they are labelled START and FINISH, or if the child is younger, you could have green for go and red for stop. Then you write on a piece of paper (or again, draw a picture if they are younger, or respond better to visuals) 'Ryan playing trains' (for example), and put it in the start box. Then when it's time to finish (I tell him when there's 5 minutes, 2 minutes and 1 minute to go) I get his attention and move the 'Ryan playing trains' from the START box to the FINISH box.

It seems to help quite a bit, as it's a visual cue, and there is no room for mis-interpretation - the language doesn't get in the way of the message. Just a thought though - it might not work for everyone.

blue_monkey wrote: »

So, I'd like to ask a question if I could. how does everyone else deal with their kids lashing out or being too 'full on' with other children. Do you say something to the other children who are trying to push them away? I have problems with Ryan not realising his affections are unwanted or when they don;t want him to play with them and they are trying to get away he will just run after them thinking they are playing agame and still trying to join in until he gets a huge shove and then gets hurt in the process. I was wondering how everyone else dealt with these situations as I find it hard to find things to say to other kids. we went to our cousins last week and he hit one of the children and she them refused to play with him again. I always make him say sorry and give a hug but he still down not get that he cannot do it. Any thoughts would be appreciated.

My Ryan likes rules, so I just explain it in the form of a rule. I try not to say 'you must not hit' etc, because that could be taken as a criticism ('why is Mummy assuming I am going to hit someone......well, now she's mentioned it, I might as well....'), I just say something like 'there are a few rules that all the children have to stick to' and then I try and frame it in a positive way and say what I DO want him to do (play calmly, gently, be kind to the other children), not what I DON'T want him to do (no hitting, no screaming etc).

Sounds so simple when I say it like that - funny how it never works out exactly that way in real life though...lol!

Ooops, sorry for yet another essay!!

blue_monkey_2

Dear PN,

I wanted to post this because I did not want you to feel isolated and alone. The problem you have (to put it one way) is that Aspergers is something relatively new to be diagnosed and 20 years ago it was unheard of for kids to be diagnosed with this condition. My sister has the same plus dyspraxia and she is 25 and was never given a diagnosis but today she would have done - and the school pushed for her to be referred and she was classed as 'special needs' and got extra help. For us I think it runs in the family, but none of us have ever been diagnosed. If I look into it I can see there are many things I can relate to myself to be honest, but I would never see myself as having AS.

I think that, for most of us, if we have AS then we have learnt through the years how to deal with life because we have just 'had to'. I used to say things without thinking and it has got me into many a trouble - I have now learned not to do it otherwise people get offended. And there are times when I have to take a deep breathe and not say anything as the thing I want to come out is not something appropriate. I really related with what you was saying about looking at something - I cringe when I think of it now but a few years back I was standing at my friends sink and a hummingbird moth flew up to the windowbox. I was just awe struck and I ran into the lounge and sai 'come and have a look at this hummingbird (I got a book later and found it was a moth) and I literally dragged someone out to take a look - but everyone else sat there and looked at me open mouthed. i can remember it to this day, I am embarrased when i think about it now but the very simple things in life amaze me at times and I will take it all in.

The skills we need to get through life are something we all now possess - as you have shown by what you have been able to do. However, now it about what we, as parents, seek to help our children cope with - I agree we never had this as kids. Will it hinder them as life goes on - again time will tell. i don't think it has hindered me at all - if an obstacle is in my path I will get past this and move on. I can talk to the hills about this that and the other but sometimes I stop and I think 'not appropriate' and change the subject. Life has to be organised for me, disruption turns me into meltdown. I could go on I suppose but as we go through life, depending on the severity of your condition, you tend to tailor your life around yourself and deal with the life things throw at you. Because I have children to look after I come last, it sounds harsh but it is true and I am sure the other mums will agree with me. If I am ill and so is my child and if there is one doctors appointment, it does not matter if I feel the worst, I would make sure my child was seen that day. It is just little things like this really, so, what I am trying to explain is that when you have children, your own feelings and thoughts get pushed aside to make sure your child is OK and if you, as an adult, do have this condition, I doubt it would get picked up as you have little time to think about it and deal with it as you cope well enough as it is. If you are not coping with your life or if you feel something is not right then it is time to find out why - as you have done. I am kind of guessing you do not have a child so, for you, you come first and you have been able to seek this diagnosis. Forgive me if I am wrong, this is just how I read your mail. I hope this all reads the way I am trying to make it sound and that it is coming out the right way?? I do have trouble putting my thoughts down in the right way too other people will post in 5 works, it takes me 5 paragraphs, LOL.

As for me, I've had problems and I think that life is OK for me right now. I am intelligent, I don't have any qualifications for one reason or another but I have worked my way through work and got an accounting qualification and now I have my own business. I still have problems with eye contact and can't look people in the eye when talking to them really. A few years back I was told by a prospective employer that I must have been hiding something because I would not look at him when I spoke. I wasn't and I could not understand why he thought this and I thought on it for a good many years and now when I speak to people I try to look at them - but now because of the problems with my son doing this I realise why. But I do find it hard - especially when I speak to people I do not know or trust - I can't tell you why that is, there is just something I can't put my finger on. I am so much better on the telephone, LOL.

We have this in my family for definate. If there has been this diagnosis back in our day I can sit here and tell you that my aunt has it (mothers side and another suspected) my sister has it, my brother has it and now my son (possibly) has it. My daughter, well.... I am not sure, maybe she is just toucing on the edge or maybe she is a pain in the !!! as she can be VERY difficult at times, I think it is more the pain in the !!! though, LOL. I think back and I can't even being to know how my mother coped with us all. I see my brother in my son every day - he was a devil with a wicked glint in his eye and he was always getting the cane for being naughty, fighting and disruptive at school. However, my brother is now a drug taker and he is very nasty and unpleasant and I would never forgive myself if my son turned out in the same way he has and I want to be able to help him get through life in the best way possible. The only difference now is we have a label for this condition where years ago there was no 'label' you just got on with what life threw at you.

Anyway, this is just my little bit (sorry, long bit) of input. Tell me if I am wrong but don't shout at me, as I know what I am trying to say but it often does not come out in the right way.

blue_monkey_2

Snaggles wrote: »

My Ryan is very similar to this, although he does remember how he likes things to be set out, so at least WE don't have to remember it!

You said you have a problem with stopping the play when it is time to do something else - have you tried 'start' and 'finish' boxes? Basically you have 2 small boxes (we use those clear plastic ones you get take-aways in), and they are labelled START and FINISH, or if the child is younger, you could have green for go and red for stop. Then you write on a piece of paper (or again, draw a picture if they are younger, or respond better to visuals) 'Ryan playing trains' (for example), and put it in the start box. Then when it's time to finish (I tell him when there's 5 minutes, 2 minutes and 1 minute to go) I get his attention and move the 'Ryan playing trains' from the START box to the FINISH box.

It seems to help quite a bit, as it's a visual cue, and there is no room for mis-interpretation - the language doesn't get in the way of the message. Just a thought though - it might not work for everyone.



My Ryan likes rules, so I just explain it in the form of a rule. I try not to say 'you must not hit' etc, because that could be taken as a criticism ('why is Mummy assuming I am going to hit someone......well, now she's mentioned it, I might as well....'), I just say something like 'there are a few rules that all the children have to stick to' and then I try and frame it in a positive way and say what I DO want him to do (play calmly, gently, be kind to the other children), not what I DON'T want him to do (no hitting, no screaming etc).

Sounds so simple when I say it like that - funny how it never works out exactly that way in real life though...lol!

Ooops, sorry for yet another essay!!

Hi Snags,

OK thanks, that sounds like something to try and certainly something I have to think about and get my head around. I admit I do say right away 'no hitting people' straightaway. Oops, I will have to think about things then do try to change the way I ask him to do things. Oooer, this is all a bit of a change for me I guess. Can I also ask, do you have other children and do they fight. I am told this is normal but my kids fight all the time and no amount of punsihement will get them to stop. Are they all the same as often I feel at my wits end with the pair of them??

blue_monkey_2

The other thing as well I found the other day is that do many of you realise that even without a diagnosis you may qualify for Disability Living Allowance (I think this is what it is called). I have spend days pondering on how this would make life easier but the extra money would mean you can buy better foods, we could have fresh meat more often than we do now, little things I suppose, the food that is 'best' generally tends to be more expensive. I am thinking about applying for it to see if it can make life more bearable just by being able to afford fresher foods more often as we are classed as low income and with me having to stop working in January, every little extra would help. Also because he has to stay at this school and we might be moving I am wondering if we might qualify for mobility as I would need to get him from school by car if we are not in the area - and he has a TA at this school that is funded by the LA.

So..... it's just a thought for you guys really.

Snaggles

Blue Monkey - I think the fact that you are so aware of the issues that your children have, and are doing so much to support them, will hopefully help steer them down a safe and happy path in life.

And if you have felt those feelings too, it does put you in a very good position to relate to how they are feeling, so it may actually be a benefit.

No-one will shout at you here for trying to put across how you feel about it all. And I think every Mum here will understand your feeling of needing to put your children first, no matter what sacrifices you have to make.

Don't worry about typing too much either - sometimes if you write things down, it clarifies them in your head, and makes sense of what can sometimes be a jumble of thoughts. (that's my excuse for typing too much and I'm sticking to it! )

Snaggles

blue_monkey wrote: »

Can I also ask, do you have other children and do they fight. I am told this is normal but my kids fight all the time and no amount of punsihement will get them to stop. Are they all the same as often I feel at my wits end with the pair of them??

I have Ryan who is 7, and Natasha who is 7 months, so they don't fight.....yet! Ryan has aimed the occasional swipe in her direction when she has knocked over one of the amazing models he builds, but generally he's really good with her. And she LOVES him to bits, and rolls about laughing when he's having a crazy half hour, running around making silly noises etc.

That's not much help to you...lol....but I think some of the others have children who are closer in ages, so hopefully they will be able to give you some advice on that.

Js_Other_Half

DLA mobility high rate is generally given for people who are unable to walk more than a short way without stopping or discomfort. DLA mobility low rate is given for people who may need supervision and support to walk - eg kids with learning difficulties but no physical disablities.

You may be able to get education transport to transport your son to school depending on the circumstances.However be aware that your son may have to move schools if you move out of that educational authority.

I hope it all works out for you.

blue_monkey_2

Thank JS, we are trying to ensure that my son stays in this area - and whereever he goes we will send him to this school still - even if I do have to pay for it myself. It was just a thought. Someone else on another thread said the other day that they get low level mobility because their son runs off when they are out. My son does this but I don;t think I would claim just because of this, just because I have to drive to school. There are kids at this school who live 12 miles away so you can go to this school and not live in the area. I do intend to keep him there if I can.

blue_monkey_2

OK, so back to the school. I've come for a moan now - so sorry.

I took my son to school this morning and he went in fine. When I went to collect him I was told he had had a bad morning. He threw his costume off - and he had been horrible to his classroom assistant. Because he had been fine while learning the songs (non-costume) they assumed he was going to be OK (I have always expressed my surprise at this).

Well, they have told me this morning that he ended up in the head teachers office and that she has told him that if he is naughty tomorrow (for the play) then he is not allowed to go to the party at school on Thursday.

So to be honest, I am pretty cross that they have threatened him with this. I think that he should not miss out the party 'as punishment' because he won't do what I have told them all along he won't do and I have offered to keep him off for. I can tell you now that no amount of bribing is going to work on his as he does not understand that he will miss out on anything. Does that make sense? He does not understand punishments such as these. So now I don't know what to do.

I am tempted this moment to tell them tomorrow point blank that I am not sending him in as I know he will not sit there dressed up for half an hour and that he does not understand the consequences of punishment and because I would prefer him to go to the party I am keeping him at home. Or, do I just tell them tomorrow that he is ill and can't come in. I can either get my sister round for an hour to come and look after him so I can go and see my DD in the play (they are both supposed to be in it together) and hubby can go in the afternoon, or should I risk sending him in and then him bieng punished for not being the perfect snowflake.

I have told them from day 1 that he will not dress up and I was happy that he sat and learned the songs BUT he will not dress up for an audience. And I know that. I had enough trauma with last years without having it this year also.

PLEASE tell me what you would do. OK, off for the school run!! I'll check in later.