Can anyone help me with a Brownies question?

[mdpis3]

Hi - I'm hoping there are some Brownie leaders here or other parents who can help. I'll keep this as short as possible. DD(almost 7) has cerebral palsy and autism. She is mobile, albeit in her own way, and we have worked tirelessly for years to help her gain better control and understanding of her senses, emotions and the world around her. In short, she is quirky but a ton of fun. And she trips/falls over a lot but absolutely always laughs it off. The mental and physical disabilities are actually the least of her worries as her biggest one is the fact that absolutely nothing works as it should between her mouth and her bottom. She can't swallow, eat, drink or poop without a multitude of medicine. This is where my question comes in...

At 5 we tried Rainbows. It was a disaster. It was a new group that was absolutely huge and the leaders were all quite new and young. Absolutely lovely but just not quite sure on how to include DD. She couldn't play the running around/skipping/hula hoop games so the alternative was to sit and colour. She couldn't colour because she has poor hand control and couldn't stabilise the paper. Also, as she is home educated she didn't have a friend base and it became clear quite quickly that she was 'different' and after 6 weeks (we gave it a good go) she asked to leave. Fast forward 2 years and she is almost at Brownies age and she is desperate to go but I have no idea where to start. The guiding/brownie website states that they are completely inclusive but I don't want to send her off to slaughter. The chances of her ever being able to go on an overnight trip, camping or any trip of any type without me or my DH are slim to none and I don't want her to feel different

Are there different approaches to children with disabilities? Should I call around all the local groups and see which one might suit DD better? Are there any groups that are specifically for disabled children? Can I pay for her to have a carer attend to help her? If I explained the issues would the leader perhaps be happy for me to stay each week and help DD as well as the rest of the group? I want her to experience life like other little girls (in fairness I went to Brownies as a kid and hated it but DD really really wants to go) but I don't want her to continually have to explain why she cant eat whatever they've baked or why at 7 she still needs her Mum to accompany her to the toilet.

I feel overwhelmed and don't know how to approach this. She is so brave and has spent her whole life in and out of hospital and the sheer volume of medicine that she takes just to get through each day would make an adult cry. How can I fulfill her dream of being a Brownie whilst also making sure her care isn't compromised and that she isn't teased?

Thanks for reading...

Hi there. I'm not a Guider, but a Scouter, but I should imagine it is pretty similar.
The guiding/brownie website states that they are completely inclusive but I don't want to send her off to slaughter
I think it's fair to say we all aim to be completely inclusive - but, as with all volunteers, come with our own experiences / lack of experience, knowledge / lack or knowledge, confidence to tackle a new challenge / lack of confidence in our own abilities.

Should I call around all the local groups and see which one might suit DD better?
If it were me, I would try to find out a number for the local District Commissioner (or in Scouting it could be the ADC - Asst District Commissioner - for a Section - so in your case Brownies - or the ADC Special Needs. I would have a chat about your dd's abilities and limitations, and ask them which particular pack they thought would be the best one for her. I know in my area, I field these sorts of calls all the time, which means I can a) point the families in the direction of the packs I think would be able to give the best experiences to your dd, and also, be aware of her, and go down to meet the Leaders and offer what advice I could.

That said, you - as her parents - are obviously the experts on your dd and whereas I could offer lots of general advice about working with a child with autism, you could offer specific advice about what works for your dd.

Are there any groups that are specifically for disabled children?
In our County, we do have Groups specifically for children with disabilities - 2 of which run within school time, at special schools, and one of which is in the evening. Not all Counties do have them though as some people feel they are excluding dc with additional needs.

Can I pay for her to have a carer attend to help her?
Yes, a carer would be very welcome - subject to normal dbs/Scout Association safeguarding procedure. You may be able to get this funded by an organisation such as KIDs (or ask at SCOPE?) or through 'Short Breaks' (although I can't get our Local Authority to fund this).

If I explained the issues would the leader perhaps be happy for me to stay each week and help DD as well as the rest of the group?
Same with you staying - you would need to be checked through normal safeguarding procedure, but I feel that parents of the child shouldn't have to be asked to stay (unless of course they want to) if no other parents are asked to stay. It might well give the Leaders more confidence if you offered to stay for the first 6 weeks or whatever though.

but I don't want her to continually have to explain why she cant eat whatever they've baked or why at 7 she still needs her Mum to accompany her to the toilet
I've worked with Nurse Specialists who work alongside dc and families with all sorts of different conditions, and they sometimes suggest - if the dc is comfortable with it - explaining to the rest of the class (or in this case, pack) a little about the condition in the first place. Obviously this is only with the child's permission, but I know of several dc who have found it to be really, really helpful to them - the other dc listen, tend to be very accepting, and then just get on with things. Up to you if you think this would be helpful or not - I know some parents are horrified, but others think it's the most practical solution ever.

The mental and physical disabilities are actually the least of her worries as her biggest one is the fact that absolutely nothing works as it should between her mouth and her bottom. She can't swallow, eat, drink or poop without a multitude of medicine

I wouldn't worry too much about this in the first instance. I'd worry about the weekly meetings first and see how she likes it. Some packs only go away quite rarely, so it might not come up. Once she is a member of the pack and considered one of the crowd, then people will be all the more determined to find a way to make it happen.

HTH. As I say, this is all from a Scout pov, but I'm sure it can't be far different. There are a lot of guiders on here though, hopefully we'll find some soon.

I'm a guider - and I'd like to think everything backforgood says above stands true for our organisation too.
I could waffle on ..... But she's said it all.
Get in touch with the District Commissioner ..... If you can't get any details, eithe r use the Join Us link on the Girlguiding webpage or PM and I'll see what I can find out for you.

How well can she explain her own needs?
Tbf, her needs sound complex enough that the safest bet would be if you were a helper, too. They'll bite your hand off ime.

I would phone around & explain what she might most enjoy, that you expect to stay and happy to be DBS'd, see what they say. Different groups are run in very different ways, anyway.

Some guiders even have daughters with cp themselves

As back says, everything depends on the volunteers - the aim of the organisation to be inclusive is absolutely sound, but you will find some volunteers who are more confident dealing with additional needs, and others who are frankly terrified...

I had it easy with dd2 as the way it turned out, I was her brownie leader (and then her first guide leader for a year before I took on the older gals). She will rejoin my unit in September when she moves up.

She doesn't have asd, but I have a ds with ADHD and ASD traits - and I ran his cub pack as well... in all seriousness, there are girls thriving in the program with very complex needs (and not all of them have mums as guiders lol)

If you are not interested in becoming a leader or non-member volunteer yourself, then yes, it would be a good idea to offer to provide a support worker if the unit do not have an excess of volunteers and would appreciate it - however, there may also be a much older girl who is looking for an opportunity to do some community service volunteering who might be interested - a lot of the older girls take on young leadership roles in younger sections. You would need to be confident on the reliability and maturity of the helper, but I have seen it work well.

Letting your dd gain some independence is huge, and it is scary when you are relying on other people to provide support and welcome her, but please don't feel overwhelmed. Just make some phone calls locally and ask questions - the HE network is usually huge and a lot of folk use these types of groups to provide different experiences - see if any of your HE network have any recommendations? And I would just be matter of fact - there is no need to apologise, or try to minimise her needs, or any embarassment - it's much easier as a volunteer if we have as complete a picture as possible, and can work with parents to find solutions to issues. (And the baking thing is fine - you can volunteer to go in and help them make whatever dd's favourite treat that she can eat it is - if it seems plausible - we've done vegan cupcakes, and always have lots of international cuisine - the girls are all aware of allergies and whatnot, and diet plays a huge part in a lot of health management.)

As an aside - I think there is still a disability awareness badge or similar - or it might be guide age now - but we carted in pretty much everything we own (wheelchairs, specialist bowls and cutlery, AFOs, and had a very open and frank conversation with the girls about the physical environment and different abilities. And then we blindfolded some, put others in the wheelchair, and gave them a variety of tasks to do. We later did the same activity out in the local community with the older girls, and the guides actually wrote a letter to the town to request better facilities for wheelchairs users in the community centre - no one could reach the soap dispenser, they had trouble with doors etc etc. The idea was not to further 'other' dd (she was an active voice) but to let the girls know that disability isn't scary or to be talked about in hushed tones - it's an ordinary part of life for a lot of people. No pity required, but an understanding in real terms of the issues faced. I'm a huge believer in the value of kids understanding that we all come in lots of different shapes, sizes and abilities, and all are perfectly normal. I don't use dd as a teaching tool, but just familiarity means that the other girls in the unit may be less wary in the future. The guide leader said it was the best meeting she had run in terms of girl engagement and getting them to see very familiar things from a completely different perspective.

As an aside, dd2 is now 11, and is going away this summer to a week long camp where she will know no one. She is abuzz. I am terrified. But we will all survive

Sending lots of vibes that you find that you find a welcoming and enthusiastic pack, and that dd thrives xx

If you are willing to become a helper at Brownies am sure they'll be very happy to have you both. DD unit is at constant risk of closing as they find getting leaders to be v v difficult.

But most Brownie units have huge waiting lists. DD was on it for 4 years. If you help you might get to jump the queue, but otherwise it might be a while before she gets to the top of the list.

backforgood at our brownie pack, all the mums help out regularly on a rota and we haven't been asked for a DBS check.

Once again, I only know Scout Rules, and am assuming Guide rules are pretty similar.
For Scout Association, a 'visitor' doesn't have to be checked - say you get someone in for 3 weeks as they have skill to help with a certain badge, or someone who gives a talk or something. A 'regular helper' does. I guess it's down to how yo0u interpret 'regular'. To my mind, if all parents give one evening term, then I don't think that's 'regular' enough to need a DBS, (as long as they are never left alone with the dc), but if you were coming along to every meeting (which is what the OP was talking about) then that would be regular, IMO.

I'm a brownie leader. I have fieldwork additional needs and have a disability myself. My first port of call would be to call your county office and speak the the special needs advisor. They would probably be able to recommend a unit or be able to put you in touch.

You could also apply online and put it in the box with extra info.

I would be happy to take your daughter into my unit. We're small but the girls are very accepting of everyone x

Fieldwork... Should have been girls with.

Yy to contacting the County office and ask for the County special needs advisor (who will also be a volunteer).

Main impact on finding a unit is that there is a massive national shortage of leaders and v long lists in some places. I think you and perspective units will need a realistic discussion and understanding of your daughter's needs, your expectations and the leaders' about how much the programme can be adapted to include her.

I think matching of a space your daughter can florish, that has accessible space (we're up two flights of stairs in a space the size of a cupboard which is full of daytime activities furniture) and most importantly the volunteer leaders with confidence to ask stupid questions and not be worried about your reaction when trying to balance including your daughter with the needs of the other girls (so playing 1 running game rather than 3) so everyone gets the best experience possible.

To be honest, I wouldn't accept your daughter to my unit because of space issues and because we run at 27 (just one more!!) - we just couldn't cope with another child let alone any that would require additional support. My retired assistant who gives me capacity to do a lot more as she has free time during the day will be moving on and we'll be down to two leaders. This will impact on what I can offer as I have county and district roles, other volunteering and family commitments, going for a promotion at work, becoming an aunt next month and prepping for a course with associated course work and exams over the next couple of years. This means we're going to drop to 22-24 max rather than our current 27-30.

A carer to support your daughter and ongoing communication will make a difference. It will also allow her to gain confidence and independence away from you and give you a respite and chance to see her gain confidence, new skills and friends in a safe space. Once you speak to the County there will be lots of efforts behind the scenes to get her into a unit that is right for her and where the leaders feel able to cope. Just please avoid coming across like the OP in this thread and you will all learn together and the girls will be enriched by your daughter's presence in the unit.

www.mumsnet.com/Talk/special_needs/2263203-Rainbows-Girl-Guides-all-my-daughter-wants-for-Christmas-is-to-be-included-in-your-organisation

Thank you so much for all of the informative and kind replies. I will definitely contact the county office and speak with someone about her additional needs. I am more than happy to help, volunteer, stay and to have whatever checks are needed. Not just as a helper to DD but also to be a part of all the girls experience. I would much rather a unit said from the get-go that they wouldn't be able to accommodate her, rather than have DD start and then need to leave/move. As you've all said, a call to the county office is my first port of call. Thank you all again.

Definitely get in touch with the district comissioner as she may be able to advise on a unit that may be well equipped to cope with your daughter's needs. For example, I am a leader but also a teacher with a background in SEN so my unit is top of the list for girls with additional needs. If you are willing to help I think that will make all of the difference. We have a mum who comes each week and also comes on residential trips. If mum couldn't come we wouldn't exclude the girl, but it makes it so much easier for us that she is happy to be involved.

Hi I'm a brownie leader and would never turn anyone away. However we are obviously run by volunteers so some units will be better for your daughter than others. Some units have lots of leaders/adult helpers and some may only have a couple.

We have had a girl with a 1 to 1 before. Please be honest with the leaders but obviously you only need to explain as much as you want to the other children.

As for sleepovers etc. if you are DBS'd you would be able to go on the sleepover too.

First point of call - get in touch, and depending on which units have spaces, maybe try and visit a couple to see what you think feels right.

Please let us know how you get on!

Me again...

I replied to this earlier but its now not showing. Anyway. I called the area coordinator lady and she put me in touch with another lady who deals with the children who have special/additional needs. It transpires that she is also an occupational therapist so she really had a great understanding of DD's needs. She was wonderful. I live in Surrey which is a huge county so although she is familiar with my particular town, she is going to email the local leaders and speak to each of them to see which one would be the best match for DD as she is several towns away. She said when she had short listed 2 or 3 she would arrange to meet me and DD at the group so that DD can meet the leaders and girls and they can meet her and then how the match is in person. She also said that it will be ok for us to have a bigger area (I think like a catchment area) because there will be a percentage of units who even if they have space, will not be able to accommodate DD (up stairs for example) so it's nice to know that we can still be considered for Brownies even if none of our local groups can help.

I explained that I would be more than happy to stay and do 1 to 1 with DD with a view to pull back from her and also help/volunteer with the group and she said that whatever group we end up at, they would bite my arm off for any offers of help.

Which leads me to my next question... Can I go ahead and do my DBS check now? Or is this something that can only be initiated/arranged by the unit leader? I am happy to pay for it and have been extensively screened (up to DV level) before having DD but I don't know whether that includes a DBS etc

Thanks again for all your input and kind words.

Excellent news, I am a brownie leader in Surrey do you never know

Don't do the Dbs now as it is easier if it goes through guiding systems

I also want to wish you all the best. My brownie leader when I was little worked for scope and as s consequence about a quarter of the brownies had cerebral palsy. It was just normal to us

Not North East Surrey by any chance Margolotta?

And that's exactly what we want, for her to just be normal. One of the girls. No special dispensations but just please don't make her skip for 90 minutes lol

East Surrey yes weirdly enough

Good luck, I hope she loves it