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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:
PutWoodInHoleDuck · 17/10/2023 21:15

Wonderful! But the school sound useless. I'm a teacher and we have to do what we can to accommodate all children. Have you been clear with school she has done residentials with Brownies?

Motheranddaughter · 17/10/2023 21:15

That’s absolutely brilliant x

PuttingDownRoots · 17/10/2023 21:18

The school should be trying to include her!

But your Rainbows and Brownies leaders sound awesome. This is why I love beinga Cub leader... its seeing small victories and happy faces.

NotesApp · 17/10/2023 21:18

What a lovely thing to read. I’m sure you already have but if not I’d write all this in a card for them so they know what it means.

LoveTheLeadersAndVolunteers · 17/10/2023 21:18

PutWoodInHoleDuck · 17/10/2023 21:15

Wonderful! But the school sound useless. I'm a teacher and we have to do what we can to accommodate all children. Have you been clear with school she has done residentials with Brownies?

@PutWoodInHoleDuck They make all the right noises and say they'll see what they can do and always come back and say it's not possible to make that many adjustments so I can send her without them or she can stay behind.

OP posts:
DaleksAreTinCans · 17/10/2023 21:19

School need to know that a voluntary organisation, who aren't specifically to do with helping kids with disabilities, can perfectly manage to take her away on residentials and trips, so how come they can't, when they're surely from an educational providing background which should be able to cater for all kids.

ThePoshUns · 17/10/2023 21:19

Such a nice post, there are some lovely people out there. It's sad your daughter's school who should know and understand her more, can't be as accommodating.

londonrach · 17/10/2023 21:20

My DD loves rainbow s and it been the making of her. Her group has a few children who have complex needs and they treated as they should be as just another rainbow.....hence why every week every girl attends..they do games, crafts and learn skills....and the leaders do it for free! They amazing!

coronafiona · 17/10/2023 21:20

That's brought a tear to my eye. I'm so pleased for you and yours. Lovely Smile

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

StrikesFutureWife · 17/10/2023 21:24

This is lovely and sad to read in equal measure. I wholeheartedly agree about brownie leaders being amazing in the time they give up voluntarily to provide adventures for kids. I also buy them gifts to say thank you. But your school isn't doing enough, EDS shouldn't mean your DD is left behind. So sorry to read that she's missed out on those trips.

itsmyp4rty · 17/10/2023 21:25

What amazing women the leaders are, so wonderful that they are so inclusive! Very, very disappointing behaviour by the school though, I think this needs more discussion. If volunteers can make the effort to include your daughter then school should -talk to the teacher, then the head and then the governors and make it clear this needs resolving! Your daughter deserves to have the same opportunities as the other kids. Can you imagine them saying they couldn't take a child in a wheelchair because they couldn't make the necessary adjustments? That just would not happen! So it shouldn't happen for your daughter either.

Chickenkeev · 17/10/2023 21:25

Like PPs, totally welling up here! They sound amazing altogether. Wonderful for once to hear of something inclusive. Your DD sounds like she loves it, and be sure she'll be reaping the rewards long into the future. Lovely post OP 🥰

TheMousePipes · 17/10/2023 21:26

I have EDS, as does my daughter. I’m at a loss as to why school have refused to take your poor dd on residential trips. In fact, I’m fucking livid on your behalf that your daughter has been othered in this way - my dd has been away with school many times. Reasonable adjustment isn’t rocket science, and it should absolutely be possible to ensure that a child with EDS can be accommodated, as your wonderful brownie and rainbow leaders have proved.

Chickenkeev · 17/10/2023 21:28

TheMousePipes · 17/10/2023 21:26

I have EDS, as does my daughter. I’m at a loss as to why school have refused to take your poor dd on residential trips. In fact, I’m fucking livid on your behalf that your daughter has been othered in this way - my dd has been away with school many times. Reasonable adjustment isn’t rocket science, and it should absolutely be possible to ensure that a child with EDS can be accommodated, as your wonderful brownie and rainbow leaders have proved.

I'm not familiar with EDS, but like you're pointing out, if Brownies/Scouts can manage it (i assume with a more limited budget/resources), why the hell can't the school??? That's not on at all.

LoveTheLeadersAndVolunteers · 17/10/2023 21:31

School do cater for her on general day trips, but they say the residential are optional so they don't have to. They make all the right noises and i've pointed out Brownies and Rainbows have managed it, and they say they see what they can do but then say it's too expensive/not doable/the centre won't provide it.

OP posts:
mysparkleismissing · 17/10/2023 21:37

What a lovely post. So pleased your daughter gets this chance. The school should be ashamed of themselves

NotSorry · 17/10/2023 21:39

I'm a cub leader and over the years have had lots of children with different special needs and that has never been a barrier to taking them on residentials. Big shout out to your Brownie leaders and shame on the school for not being inclusive.

BHRK · 17/10/2023 21:40

This made me cry. What wonderful
leaders

Evaka · 17/10/2023 21:41

Gorgeous people x

Whattodo112222 · 17/10/2023 21:41

So lovely to read this.
My DD5 finally starts Rainbows after half term when we take up a place after being on the waiting list for close to a year! Excited for her:)

TheTriffidsAreComing · 17/10/2023 21:44

If you have the time and energy I would seriously consider taking the school to SENDIST for disability discrimination, if not for your daughter (as it may be too late for her) but for the children who come after her.

Chickenkeev · 17/10/2023 21:45

LoveTheLeadersAndVolunteers · 17/10/2023 21:31

School do cater for her on general day trips, but they say the residential are optional so they don't have to. They make all the right noises and i've pointed out Brownies and Rainbows have managed it, and they say they see what they can do but then say it's too expensive/not doable/the centre won't provide it.

They sound lazy tbh. I wouldn't be haply with that. So lovely that your DD has Brownies to include and empower her. It's really giving me the sniffles (so much so that H just asked was I ok 😂)

SoIRejoined · 17/10/2023 21:46

Your brownies sounds amazing but your school sounds crap. Can you speak to SENDIASS. I think they are bullshitting you by saying it's "voluntary". It's clearly an important part of her education which she is being excluded from for no good reason.

Rosiepeta · 17/10/2023 21:47

That is so lovely! Lovely for your dd to have those memories! So glad they make the effort to include her, such a shame school doesn't .