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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To tell you how absolutely amazing my DDs Rainbows and Brownies Leaders are because they give her chances no-one else will?

95 replies

LoveTheLeadersAndVolunteers · 17/10/2023 21:12

DD is 9, school year 5.

She has Ehlers Danlos Syndrome and Dyspraxia.

She wasn’t able to do the 2-night Year 4 residential as school felt she wouldn’t cope. She’s been told she can’t do the 3-night Year 5 one and will most likely not do the week-long Year 6 one. It’s so sad for her. In year 4 she literally watched the other 89 Year 4s and the teachers get on a bus for 3 days. She doesn’t have the memories of midnight feats or when Mrs X burnt the toast because she wasn’t there.

She joined Rainbows aged 6 and has never looked back.

She’s done 1- and 2-night sleepovers and is doing her first holiday in half term for 3 nights. She is so excited.

When the letters came out, I was expecting it to be a no like school. I’d prepared her that she may not be able to go, but promised I’d ask. But it never was no. Sometimes it was “Can I learn more about her conditions first?” or “Tell me what would help her to be able to attend” but it was never no, or maybe, it was always “We’d like her to come”.

The leaders have done so much to help her. They let her get there early to choose her bed, they let her take her weighted blanket to help with pain, they give her Calpol when needed. They cook food that won’t hurt her mouth as when she’s really bad she can blister her mouth easily. They never force her to do activities if she’s in pain/tired/doesn’t feel comfortable. They let her take her sticks so she can walk. They have even for the next one found a room on the ground floor for her and her six to share so she doesn’t have to climb stairs.

They have pushed her out of her comfort zone. And I cannot thank them enough. Since joining Rainbows not only has her confidence built, but she’s learnt so much about her conditions and that reflects so well in her personality.

I was so scared the first 1-night sleepover, worried she’d not cope or the leaders would say no to the next time, but she came back buzzing and the leaders gave her an award on the last meeting for being brave. She kept asking when she can go again. She has not stopped talking about her holiday since it was announced in June.

She has those memories now, of sneaking into the leader’s room to take their slippers, of running up and down the corridor giggling, of a camp fire and singing and all those lovely childhood memories that I just cannot recreate.

Brownies is her favourite time of the week and that’s down to her amazing leaders. I just love them. And I buy them Christmas presents and end of year presents like her teachers because I love these women. They voluntarily take the girls away, they leave their own children and grandchildren at home to take my child away and that’s amazing.

Sorry I think I’m going on. I just will not hear a bad thing about them! Probably UR to put it here though

OP posts:
gotomomo · 18/10/2023 17:23

Well done brownies.

I'm ashamed of what I read about the school though. I've organised youth trips and taken a young lady with moderate (I suppose) eds with us (she used sticks mostly and a wheelchair on longer distances) I worked with her on meals (she was old enough for this) and the other young people helped too. You don't leave kids at home, if it came down to it we would have requested a parent or carer came with them rather than them miss out

Mouseplant · 18/10/2023 17:44

It doesn't seem right that the school make her stand her crutches up in the corner - she has a right to have them to hand.

And as for not giving Calpol when it's in her EHCP, how is that lawful. I used to work with disabled people who could walk but struggled to do so/ found it painful - they often faced prejudice from people who thought they taking the piss by using a mobility scooter because they could walk. It sounds to me like the school is showing the same kind of prejudice.

itsgettingweird · 18/10/2023 17:50

Which section of her echo is the calpol in?

They are legally bind to do section F. So I'd call an early review and make sure LA attend and get it in there.

School sound cruel if I'm honest.

Dixiechickonhols · 18/10/2023 17:53

Lovely post Op. Please do share with the leaders and their District Commissioner.
I’m a Guide leader. We are volunteers. Some parents have no idea of hours that go into it or things we have to deal with. A message like this honestly will give them all such a boost.

BashfulClam · 18/10/2023 17:54

My friend is a Brownie leader. She does amazing work.

Myhusbandearns150k · 18/10/2023 17:59

I’m so pleased for your daughter! Long may she continue to enjoy her trips. She deserves better from her school.

Abracadabra12345 · 18/10/2023 18:55

cpphelp · 17/10/2023 21:22

I've just cried! This is lovely. Please send this to your local paper, those leaders deserve local credit and to give other children the chance to be included too x

I agree!

Thanks for making me blub

JosieB68 · 18/10/2023 19:00

That’s made my day reading your post. What a wee star you’ve got!
The world needs more people like your daughters brownie leaders!

Lougle · 18/10/2023 19:10

@LoveTheLeadersAndVolunteers

I'm so glad they are so accommodating. Please do challenge your Dd's SEN provision. Either enforcing or getting a review of the EHCP.

Sueveneers · 18/10/2023 19:19

OP, You really, really need to very STRONGLY consider moving her to a new school. What are you thinking of, having her at that abusive school? The school is not simply neglectful and ignoring their inclusivity and duty of care, they are outwardly and openly HOSTILE to her needs. I am glad she is so happy at Rainbows and Brownies, but what are you thinking?!??? Get her OUT of that school NOW! I'd even homeschool her before I ever let her spend one more day at that abusive school. They truly need to be reported.

BrontëParsonage · 18/10/2023 19:38

Just to add to the love for Girlguiding (and, as an avid reader of the Feminism boards, I know and understand why the organisation can come in for some stick). My DD1(15) joined Rainbows when she was five and she is now a Senior Ranger and a Young Leader as well as a Peer Educator. Girlguiding has been the making and saving of my DD through some real crises in her life. She is blind and she is diagnosed with autism, ADHD, neonatal abstinence syndrome and binge eating disorder.

My DD goes on every single camp (and there are many) and this summer, her leaders took 50 (!) Guides and Rangers on a week-long wild camp to Sweden. The leaders gave up their annual leave to do so. It was my DD’s first trip abroad as we are a very low income family. In 2025, the unit is travelling to the Swiss Alps for 10 days and the leaders have designed the trip to ensure that my DD can access the hikes etc without compromising the enjoyment or personal challenges of her sighted peers.

My DD is also not well supported in her mainstream school, despite an EHCP and additional high needs top-up funding. She has no friends at school, mainly due to her disabilities, but she has friends at her Rangers pack. Her leaders foster a can-do attitude and environment of support and inclusion. My DD has never been excluded from any Girlguiding activity because of her disabilities; in fact, she has always been encouraged to challenge herself and other people’s perceptions of what disabled people can achieve. Honestly, DD’s Rangers pack only meets once a fortnight but she floats through the door afterwards like she’s had a turbo-charged boost of self-esteem and self-belief. This is a kid who gets the stuffing knocked out of her at school on a daily basis.

Comedycook · 18/10/2023 19:42

Your post brought me to tears @BrontëParsonage I can relate to a lot of what you said. Guides has been the making of my dd too.

LoveTheLeadersAndVolunteers · 18/10/2023 19:51

Sueveneers · 18/10/2023 19:19

OP, You really, really need to very STRONGLY consider moving her to a new school. What are you thinking of, having her at that abusive school? The school is not simply neglectful and ignoring their inclusivity and duty of care, they are outwardly and openly HOSTILE to her needs. I am glad she is so happy at Rainbows and Brownies, but what are you thinking?!??? Get her OUT of that school NOW! I'd even homeschool her before I ever let her spend one more day at that abusive school. They truly need to be reported.

@Sueveneers This is the catchment school, the next nearest school is catholic which we wouldn't get into, and I've been told I won't get transport for another school as current school say they can meet need and it's the nearest, I have no options.

OP posts:
Dutch1e · 18/10/2023 20:09

This warms my heart, I'm absolutely delighted for both of you!

My child is a bit of an oddball and basically cried for the first 2 years of Scouts. Not once did they ever get annoyed with him or ask us to keep him home. They just kept on doing their thing and treating him like all the other kids, asking us for any info we had on how to support him.

Now he has blossomed and dives into everything. He even quietly took my hand once and said how happy he is that everyone stuck with him.

Like you, I'll never hear a word against them, they are an amazing bunch of young leaders and I'm blown away at how they just roll with whatever the kids are grappling with.

There's nothing like collecting your tired grubby kid from the best day of their life is there.

Ourshoddyhouse · 18/10/2023 20:36

This made me cry OP they sound lovely ( school sound useless)

Not sure if this is relevant but could you nominate for a hero award

Hero award

Show your appreciation of members and friends with this award

https://www.girlguiding.org.uk/information-for-volunteers/running-your-unit/managing-your-team/awards-and-recognition/hero-award/

BiddyPop · 19/10/2023 08:45

That's so lovely to read about the Rainbows/Brownie leaders. I am a cub leader and while we haven't had EDS in the group, we've had plenty of other physical and mental challenges to overcome for some Cubs. But there's always an option to manage them if you think ahead and are prepared.

I am currently feeling particularly guilty as I am moving abroad for work at short notice and have to leave the pack. But the deciding factor on when I could leave was staying long enough to cover the hostel trip at the start of November as there wouldn't be enough leaders if I didn't. We've managed to get parents to help finish the year with Den sessions (our Scouting year ends in December and we get new Cubs in January).

MojoDojoCasaHouse · 19/10/2023 09:06

This is lovely OP. The Guiding movement seems to be unpopular on MN. It’s been the making of my dyslexic, dyspraxic, painfully shy 13 year old. All her best friends are in her Guides unit. A welcome relief from the low level bullying she experiences daily at school. It’s a space where her work ethic, kindness and loyalty are appreciated and rewarded. The leaders with great at including my daughter with ASD as well, also excluded from school residentials but welcomed to Brownies.

I would be taking on the school over the non compliance with the EHCP. It’s a legal document! Get your local SENDIAS involved. It their role to support parents with this.

SoShallINever · 19/10/2023 09:23

I'm stunned at the school. Our DCs school invites the parents of children with additional needs to go on residential with them if they really can't meet their needs otherwise.

LoveTheLeadersAndVolunteers · 19/10/2023 10:22

I couldn't go on the residentials even if I wanted to, I'm a single working parent, I work term time only so can't take actual holidays off and if I did it'd be unpaid (not a school but a workplace that offers TTO).

OP posts:
GertrudePerkinsPaperyThing · 19/10/2023 10:26

It’s lovely the Rainbows and Brownies leaders are so great but the school are being rubbish!

There’s a child in my son’s class who is completely blind (probably there’s a better term) and she goes on the trips with her 1-2-1

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