Worried..any ideas?

[mumble_rocks]

In July this year I am representing the UK in the World Scout Jamboree in Essex with 41,000 other Scouts from around the world. When I put my name down as an applicant, went through 3 interviews with various people and a few assessed camps it seemed a great idea! Now when its 14 and a half weeks off I am getting very worried and have told one of my leaders 3 times I dont want to do it. She has a sister with AS Diongised and is great with me and very understanding and wants to do what she can to help. My mum on the other hand knows I have AS but doesnt want a digonsis as fear of people then labelling me! I think instead there just think I am wierd !

 

I am really worried about going there are 4 cermonys where all 41,000 attend the one area of the site during a 12 day period the amount of noise, movement, smells get the idea!. Which I really dreading another thing we dont get told whats going on until we get to the site in July so no advance warning !! After the 12 days we as a contingent of 40 are going to Poland cant wait for that as long as I can get through the airport! Um..... has anyone got any ideas as my contingent leader is desperate for me not to pull out and I really dont want to either I know I will regret it! Ideas on how to cope? She said about Ear Defenders seems sensible to me and would love it as then I enjoy it But, mum on the other hand doesnt want me to stand out! I dont want to have a complete meltdown, she thinks when I cant cope I am just a little baby and needs to learn not to have tantrums!

 

ANY IDEAS!! I am 16

PLEASE!

 

xxxxKatiexxx

[Cat]

It's difficult to answer this without it looking as if I am having a go at your Mum when I am not. Us Mums tend to do what we think is best for our children only we sometimes forget that they have a say to My own son started to point this out to me when he was about 16.

 

My own thoughts are that you appear to have pretty good self awareness and that is good Knowing what makes you tick and overload is a positive I think.

 

41,000 people is a lot of people and I think most people autistic or not would be worried to some extent about this. My own son always worries about doing things he has never done before. Even if it's something he really wants to do. He loves Ice Hockey but he makes several trips to the loo before every game (I hope he does not read this or he will not be happy with me) Even though he knows that he will be OK when he gets there it does not stop his anxiety before going.

 

Do your leaders know that you have AS? Do you want them to? Do you think them knowing would help? My son was 13 when he got his diagnosis and he needed to know and put a name to how he was feeling. So the label helped him. Maybe if you could talk about your anxieties to one of the leaders and better still tell them ways of making you feel better. EG if you knew there was a quiet space just for you if it all too much for you would that help? My youngest son was all set to go to Boys Brigade Camp but ended up not going because they could not give him a timetable of events. Is there really no way they could find out for you?

 

At the end of the day if you really want to go then does it matter if you wear ear plugs or defenders? If it makes the difference between you being able to cope or not cope then I would go with the defenders. You will know better than anyone what is going to make it OK for you to go. If you want to post that list here great - we can't tell you what to do but we could say that's a good idea

 

Cat

Edited April 14, 2007 by Cat

[Guest flutter]

well i would assume u have mp3 thingy so u can block all the noise out

i took my dd on plane a wee while ago, and the airline were great and so were security as she froze going through in case they needed to touch her

us mums fuss, i have my hands up i do it big time

u need to work out if u can what is concerning u and then look at it with someone, who can work ways thourgh it, even here

i have a habit of seeing it all afore it happens, so we cover it, and that is where i get the fussing mum bit from

x

[mrs phasmid]

phas hr is 17 and until recently was a scout too

 

he coped with jamborees by using his mp3 and ds to provide chill out time[permission of scoutleader was needed]

 

he was encouraged to join activities but if couldnt or wouldnt he would be given a more 'academic' task to do which made him happier whilst still joining in

 

ear defenders are a good idea [phas jr still uses them for fireworks, which he loves but cant stand the noise, and he's 6ft5 and 15stone so he stands out anyway]also sunglasses as you can 'blank your own fear' if you see what i mean

 

dont think about the amount of people in total [41,000 would scare me]just about your immediate group who all know you and your ways. your leader sounds a real star and a great support

 

the opportunity to go to poland is a fantastic one and try to grasp it with both hands. 'feel the fear and do it anyway' is a great motto to live by and it would be a shame to miss out. try doing a visual timetable of your journey for yourself, pictures of inside of airport[both ends], polish airliners, times of pick up and flight[although be prepared for that to change], the place your going to, places you might visit all stuff like that. again use mp3 player to help block the noise and sunglasses. phas jr likes to push the trolley as that means other people cant get too close

 

remember if you cant do it now it doesnt mean you can NEVER do it, the timing might be wrong for now but it doesnt have to stay that way. you seem a determined person so let that determination shine through and dont ever let asd become an excuse for not doing anything

 

phas jr is even having driving lessons and holding a job while doing A levels as well. so there you go a teenager with asd who is living proof that with help [from whomever] and, more importantly, your own determination, you can soar as high as you feel comfortable going

 

good luck

[cmuir]

Hi

 

I think you're brave to even consider it. You're prepared in some respects in terms of what to expect ie noise, lots of people, smells, etc. I guess, if you don't try, you won't know! ... I do think you need to have an action plan if you feel things are getting too much for you. Your leader seems to be supportive and that's a good start. It may be that you could break yourself in gently (don't know if that's an option ie don't force yourself to sit/participate in everything right from day one - break yourself in gently). Set yourself small targets. Don't let anyone force, insist or make you feel bad if you need to leave for a short while for a bit of breathing space. My son is 5 and we had a system which is quite simply thumbs up for okay, or thumbs down for not happy/not coping. That could be a quick and discreet way of communication with your scout leader to let her know you need a bit of space or help. I remember when I was at school (a good while ago now!!!), how nervous I used to get at concerts and things - in fact, I was petrified and used to be physically sick beforehand. If I had to do anything ie if I was on stage and focus of attention, I made sure I picked one or two people out of the audience and looked at their foreheads! I found it off putting making direct eye contact in that type of situation. Sorry, that may not be very helpful - I'm not sure what these things are like.

 

Best wishes

 

Caroline.

Edited April 14, 2007 by cmuir

[badonkadonk]

Hiya Katie,

 

I would first just like to point out that even if you don't go to the World Scout Jamboree and even if you continue in life without getting an official diagnosis, the very fact that you are recognising the ways in which being AS can affect you, and asking for help and advice about it on a forum, is a HUGE step and you should give yourself a massive thumbs up It might seem a silly thing to say but people often overlook just how difficult it can be to take that initial leap into thinking about something and asking questions about something rather than just locking it all away inside and just 'coping'. The acknowledgement that there is something called middle ground, rather than it just being a case of black and white (either can't cope - don't go to Jamboree or must cope and not be different - miserable time at Jamboree) is one of the biggest achievements I think for us Aspies. That you're doing this at 16 and without the help/support from your mum is a pretty good indicator that you're a bit of a brainiac so try to always think of these positives if you find yourself thinking negatively about what you can and can't do

 

As for your mum and the whole recognising AS thing. At the end of the day you're 16, if you want to get referred for an official diagnosis or for anything else you might want (AS or NON-AS related) then you are more than free to do so. It would require a rather mammouth effort of guts and determination on your part, especially as it could potentially lead to conflict at home, but if getting an offical diagnosis or even just getting some kind of help/support feels like the thing that you should be doing then I would suggest that you listen to your gut instinct and put yourself first. People can change, at some point your mum might change the way she feels about AS. Increasing her understanding and forcing her to confront the issue (through you pursuing your own diagnosis by yourself) could have a positive impact on how she sees AS and ASDs in general. It's no guarantee, it could have the opposite effect but these are the risks you have to take in life. My dad has always labelled me as 'just needing to get over herself' and as having an attitude problem. Since being forced to confront the issue through me being formally diagnosed his attitude is slowly changing. It hasn't happened overnight and it is very much a baby steps process, but bit by bit it is slowly sinking in and he's beginning to see how I see the world and see how he can help in certain situations to adapt approaches to things/the environment of the situation to lessen the negative impact it could have on me. He's also beginning to recognise that being AS isn't always about not coping in an NT environment and people having to worry about upsetting me, he seems to be also coming around to the fact that there are lots and lots of positives to being an Aspie!!

 

Regardless, it is totally up to you, if it were me I would get the official diagnosis because the help and support you could receive in further education (if this is something you were to pursue) or in the work place is greatly increased through having an official bit of paper. Disability Living Allowance and Disabled Students Allowance would be lifesavers if you were thinking of going to university. For me the official diagnosis was also for peace of mind, I now know (well can only hope...) that I am not going mentally insane and that who I am and what makes me different is not a mental health issue. My brain is perfectly healthy, aside from some self-esteem/confidence issues, it's just wired differently is all. You could get in touch with the NAS if you think that you would need guidance or get help from your local AS/ASD support group if there is such a thing near you. I am also here if you need any help/support and think another Aspie perspective could help. I'm 24 and was diagnosed around 18 months ago. As I'm sure you already know there are a few of us lurking around on here so I'm sure if I can't help/you want a sane person's advice then somebody would know something. Even if you don't go down the official diagnosis route if you want to chat about anything or ask for any advice then you can always PM me if you think this would help.

 

Right, how to deal with the Jamboree. Well. It's going to be tough, there is no getting around that, any social situation is tough for us lot. 40-odd thousand people tends to complicate things a little but there are things you can do to reduce stress/anxiety at least so you can get as positive an experience as possible. Ear defenders/ear plugs/mp3 players are all great (who cares if you stick out wearing ear defenders?!?!) Surely stood around with some headphones on your bonce is much better than shouting/crying because you are unable to deal with sensory overloading. Surely this would make you stand out more? Plus it is worth remembering that standing out for wearing some headphones is hardly a huge deal, especially when standing out in a crowd of 40 thousand people is a fairly hard thing to pull off....I'm thinking it would require removing clothes and streaking or use of an air horn to pull this off....a pair of headphones and sunglasses might not cut it

 

So deal with sensory issues the best you can...sunglasses, headphones/ear plugs, hats, comfy clothing, plenty of water (very important for stress as you dehydrate). Planning and preperation will also help reduce stress levels. I know you said there are things you can't find out in advance but even if it means sitting down with the leader who understands AS every night and going through exactly what is going to happen the next day and flagging up any potential situations where you might find things tougher than usual , just doing something to prepare yourself will help. Try to get the need to know what is going on and how it helps to have as much warning as possible if plans change across to those in charge, having them take this into account should work better for you. When it comes to assessing situations to come and finding ways to deal with them it could help if you can make the other person as aware as possible of the things which could happen/might bother you. I know we find it difficult to imagine things we don't know and so you won't be able to describe exactly but you could think back to similar situations and to coping mechanisms that you can use (such as having a code word for if things become too much) to make them aware of what will be going on inside your head and how they can help. Little things like whenever you all gather together at the site, make sure that you are surrounded as much as possible by people that you know. Try to make sure that you sit on the end of a row or inbetween people you trust as sitting next to strangers or being in the thick of crowds could trigger anxiety. Speak up about things if something is having a negative impact on you, even if it seems like it could be dismissed as being a silly/trivial thing (as often is the case with us...even though these things are anything but silly and trivial to us) because speaking up and doing something about it or even just confiding in another is far, far better than bottling everything up and just trying to 'cope'. It is worth remembering that to cope is to be pro-active in your approach to coping, if that makes any sense whatsoever, in order to cope you have to do something. Arms crossed and uncommunicative is not doing something, it's doing nothing. It's easy to sit here and say all this I know, there are still many situations where my barriers go up and I can't seem to say what the problem is/refuse to acknowledge that there is a problem but it's something that I'm always working on and that's all I can do, that is still being pro-active because I'm trying. I'm never going to be perfect, none of us are, but as long as we try to make something positive out of something that could be negative then we should be alright.

 

So, remember, try to deal with sensory issues if you can by playing around with/testing out coping mechanisms such as sunglasses and headphones. Try to plan and research and understand situations as far in advance as you can, even if this is sometimes only the night before that you can plan things. Take one day at a time, one situation at a time and try to focus on getting from one thing to another, taking little steps rather than keeping on trying to take a big step and cope with the experience as a whole in one go. Break it down into days and then into activities if possible and concentrate on the here and now rather than what's still to come. Again easier said than done but trying to do this is still better than not even having a go in the first place. Communicate how you are feeling to others...again, all too easy to say but the fact that we have 'communication difficulties' does not mean that we can't communicate, it just means that sometimes it can be a bit tougher for us or we can interpret language/meaning differently to NTs. I'm not expecting you to be able to pour your heart out to people, but just being able to say to someone else 'that guy in front who keeps tapping his foot is really getting on my nerves' should help. I know that going around a supermarket I will still be bothered by things and I might not be able to remove myself from the situation/doing anything about it. But being able to turn around to my mum or my boyfriend and saying to them 'this is bothering me' seems to take the weight off my shoulders a little bit and allows me to acknowledge the situation and move on.

 

I hope you are able to go to the Jamboree and have a good time, there will be good days and bad days but that's just how things work out, it's being able to move on and work with the bad days/negative stuff that's important and remembering that nothing is ever perfect and trying to focus/remember the positives without stressing too much.

 

I can never say it enough, understanding is key, you seem to be beginning to recognise this by asking for help in this situation. Don't stop trying, even if you go to the Jamboree and it turns into a complete shambles, never stop trying to figure yourself out and understand how being Aspergers can affect you, your world around you and those in it.

 

Sorry for the big old ramble, I hope some of it helps,

 

Emily

xxx

[Mumble]

Badonkadonk -

FANTASTIC post - and I don't mean that in any bad way - it really helped me, as I'm still coming to terms with my diagnosis, and it is supportive to know that there are others who understand my me-isms and don't brush them off as some silly, simple thing that I should be able to cope with.

 

Mumble_Rocks - sorry I'm not the sane one Badonkadonk refers to, so I don't have any advice to add. I really hope it goes well though - I'm struggling with wanting to go away by myself this summer (and only in this country!) - you have my greatest respect coping with crowds of people, new situations and new places .

[badonkadonk]

Thanks Mumble, I like being able to help if I can, even if I do just sit down, start typing and switch off

 

I'm always amazed to read what I've written and find it makes sense!

 

I did just write this post already, along with a ramble about sometimes just wanting my me-isms to be understood and accepted like NT people accept the fact that it is ok for women to pretend to go to the toilets in pairs just so they can gossip or for blokes to never do Christmas shopping before December 24th or how it is not at all weird for blokes to sit in the garden shed listening to the radio. Yet I ask them to understand how I like all the different portions of food on my plate to be kept seperate and how I see nothing wrong with listening to the same set of songs over and over and over again and all of a sudden this kind of behaviour is odd. Hmmm.

 

I can't remember half of what I had already written, I pressed the wrong button I think and IE closed...whoops. Probably for the best though, I tend to ramble

 

Though for some reason today I can't think of the differences between NTs and Aspies without thinking of those silly Mac vs PC adverts that Mitchell and Webb have done for Apple

 

Anyhoo, I understand is what I was trying to say, that sometimes it would be nice to just be 'gotten' without having to explain all the little things. (And have them appear to be little and insignificant by attempting to explain them at length and individually...how much can you really say about wanting to keep food portions seperate???) Often in difficult situations where people offer to help it's not that we want them to do any one thing in particular, it's not like we are physically disabled and the help and support we need is help in moving around, sometimes there is nothing that the other person can do but just understand us, know what we're going through and be able to imagine a little bit what we are thinking/how we are approaching things.....this just happens to be the biggest ask of all.

 

Emily

xxx