GUIDING/SCOUTING/D of E + HMS

[loosebones]

I'll have a necker when they're ready

[Lillithe4th]

Hi there

I'll have two neckies when they are ready please. I have two daughters who have been involved with guiding and scouting since they were Rainbows. They are now both training to be young leaders.
I sent a PM earlier this month but as I'm new to this forum malarky I probably got it all wrong. Ho hum, I'll maybe learn sometime.

[Jess]

The Neckers have not been made yet. Will contact all when they are ready.
Was looking at numbers first so we dont get too many ordered in the first go, last thing I want is to pay out and find that there isnt a need for them

[Otter]

I'll have a necker too please

[heavensent]

I am an officer in the Boys Brigade..have been doing this for over 5 years now and it helps me to feel as if I am of some use in the world when at times I dont feel like it. I take it very easy and have a great group of boys who help me with the badgework as my mind is usually so foggy that I forget what I should be doing half the time.. It is such a worthwhile thing to do (youth work) and it is great to see so many young people who are an asset to society and not the yobs that the general public seem to think.

[everhopeful]

I am new tonight, but was very interested to find this link. I started off in Scouting 31/2 years ago- the first 2, as an assistant Beaver Scout leader and the last 18 months as an asssistant Cub Scout leader. More recently I have been struggling a bit to run it, as Akela's had new work commitments that took up every wed evening! My Wood Beads have arrived and am just waiting for a formal presentation, just as I am falling apart!! However, I have made it very clear the work load needs to be lightend and the rest of the group (GSL, beaver leaders etc (even the ADC Cubs and DC) ) are all chipping in to help. Akela has now resigned! Only diagnosed last year, but also Raynauds. Would be impossible to camp at moment as use a stick, can hardly walk and will soon be on the wheelchair route! (and of course my hands shut down with even the slightest dip in temperature- despite 2 pairs of gloves and medication). 14 months ago, I had no symptoms, then "wham"= everything within a year!

[Jezabel]

I'm a young leader at my local Brownie Pack (the one I used to go to when I was little.) I'm supposed to be starting my Adult Leadership Qualification soon, but it doesn't look like I'm going to get a mentor any time soon.

The leaders at the group don't seem to understand the problems that HMS gives me, which probably isn't helped as I've never had to have crutches etc. This week, for example, they needed an extra person to play the game with the Brownies, that mostly consisted of getting up and down a lot and running around in circles. The other leader refused (for no reason other than she's lazy and couldn't be bothered) so I ended up having to join in. Then, when we had a pow wow, they sat on chairs and said as I'm 'young and healthy' I could sit on the floor

It's not that they've forgotten, because every so often I get asked "Your joints still bad?"

Compared to pack holiday though, the weekly meetings are easy. I've been three times now, each time getting worse (I've refused to go this year, but that's also partly to do with the fact I'm already on holiday, partly to do with the lack of lactose free food last year, and partly to do with the way they treated me like a kid last year. My role was less Brownie Leader, More Dishwasher.) I start off the week on no painkillers, and end it on just about everyone imaginable. They plan all these long walks and expect me to go on them, despite the fact I don't count as an adult according to the Guiding Manual. I don't think the camp beds and the cold help either.

The Brownies are quite sweet about it though They always try to cheer me up when it's bad.

This sounds so familiar! I haven't needed to use crutches before but I regularly turn up with a wrist splint.... My only real problem with being a young leader is the standing for so long - I am in excruciating pain after about 15 minutes, I start pacing around (and looking ridiculous) and I get some odd looks. Most of them treat me like a child as well and I'm given the tasks for 'the young and healthy one'. I haven't been brave enough to go on pack holiday yet - don't think it's a good idea to spend so much time on such high doses of painkillers lol

[everhopeful]

Hi Zosie and Jezabel
When I did my Wood Bead Training for Scouts, one of the biggest modules was on Diversity. I work with special needs in a primary school and did my module with no assistance, DVD training or training advisor support. The local training officer was amazed and sent it round the county for others to look at. This was done before I had my HMS diagnosis. If I were writing it now, I would make sure that there was a section highlighting the diversity issues relating to adult leaders too. It might be worth learning about the Guides and Brownies diversity standards and then highlighting these issues to the other adults in your group. Explain that you are keen to take part, but there may be limits to what you are able to cope with on a given week, compared to the next. You could even show them some literature to help them to understand. If diversity is as important to Guiding as it is in Scouting, then they have no choice really but to listen to you and admire you for the effort you are making, but first they need the opportunity to understand. This is a highly complex condition which some of us on here find hard to understand, so it must also be difficult for those who do not know what it feels like. Hope this may have helped. Everhopeful (Shere Khan to my Cubs)

[tbirdAnni]

I'm a Fluffy Owl with my dd's Brownies, we are both HMS and look like a pair of old crocks some weeks Brown Owl does have a habit of forgetting what we can (and can't) do but I made quite a big deal of with our meds on pack hols (I'm the First Aider so I was in charge of doling out all regular medication. I made sure that Aprilia had hers issued with full paperwork etc with her meals as she usually would so in full view of the other leaders rather than just slipping them to her quietly as I would on other group events) I am fortunate that I'm a "grown up" and that the unit can't actually continue without me so I'm not afraid to stomp my foot (gently though - I stress fractured it last year!) if I see even the smallest hint of a "there's nowt wrong with you" creeping in, not just with me and dd but with our other "special" Brownie too.

I know it's a lot harder for Young Leaders as there is an expectation that you are all young fit and keen to do all the stuff us old crocks can't any more but you really do just need to keep on reminding those who are old enough to know better that you *are* disabled, even if it's somewhat hidden in normal life.

BTW - love the idea of a necker..... you can *never* have too many neckers......

[coley]

Oh my goodness! Hello fellow Guiders! I have a Brownie pack in my neighbourhood, I'm the head guider. It's a tonne of work but I love it so much. I have never really told the girls or other leaders that I have a problem. I am always hiding it. I go early so that I can take my time setting everything up without anyone wondering why it takes me so long. I find that I don't even notice the pain until after the meetings. My owl name is "sunny owl" so I feel like I need to live up to it! I'm the youngest of all the leaders, so if I ever complain of an ache they're all like 'oh...wait till you have kids...wait till you get old...' and I feel so resentful. At least now I can hide most of the EDS issues.
We actually did a disability awareness night. I work in rehab so I brought in sports wheelchairs for the girls to try. They had a blast. I refuse to do camps unless they are cabin camps. I found a great one near to us that actually has real mattresses for leaders! It's great! It can be really hard having EDS and doing Brownies, but it does really help me get my mind off of my own worries. I love being a Brownie leader and I hope I can do it for the rest of my life. I'm a bit worried; I have 36 girls this year and all new leaders! We start meetings again on Wednesday. Happy Guidng year to everyone.

Sunny Owl

[coley]

Been two years since I posted on this, but just dropping a line to say that no matter how much pain or discomfort I have, my Brownies always make me feel so happy with their smiles! Tonight we watched a video that one of the girl's parents made for us (she basically made a documentary on our unit - we have a huge group of 36 girls this year!). It was amazing, we watched in on a screen in our meeting hall in our pajamas After we sat in a circle and sang Linger, not sure if all of you know it, but it warms the heart and keeps you going! Anyway, I'd been feeling down lately and tonight made me so happy, so thought I'd share.

Coley (Sunny Owl)

[KirstyHorsman]

Hiya all,

I have just signed up to do my Gold DofE, I know there can be special dispensation for less abled people (and trust me walking 4 days with kit would leave me seriously ill for ages!)

I was just wondering what other people have done regarding their expedition as it must be "challenging for all of the group" I am mostly wondering if I should just have no kit (which would still be very hard for me) or perhaps to look at an alternative mode of transport other than my feet, anything not-assisted can be used.

Has anybody done DofE to either bronze, silver or gold, and what did you do about the expedition? My main alternative would either be cycling, kayaking or sailing, although I would LOVE to do it on horseback I think that it would be too much of a logistical nightmare!

Thanks!

Kirsty

PS. Hope this is in the right place