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

[LoveTheLeadersAndVolunteers]

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

Lovely that Brownies is going so well for your DC. But as a parent of a disabled child whose school turned themselves inside out to facilitate him going on all trips, including residentials, I’m incandescent that your child was left out by their school. What’s the school normally like with adjustments? Because these

”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.”

are fairly minor things I would expect school to do without questioning. I’d pursue a formal complaint, all the way to governors and beyond if necessary.

That's great op.

I have a dd with minor special needs...She was in brownies and is now in the girl guides. It has done wonders for her confidence and she loves it. I'm eternally grateful to the wonderful leaders.

That’s so lovely. I’m so glad your daughter has those experiences to look back on and you sound like such a caring mum

The school should be ashamed though. Clearly she can go on residential trips… they just aren’t making the necessary adjustments to include her.

@Rudolphthefrog She needs a special harness if they do climbing which Rainbows/Brownies ask me to pay a bit extra for but source it themselves, school say it's to expensive to hire (Brownies have only ever charged me £5-10 for it).

She can't ride a bike or scooter, Brownies change her activity for that day/time, school say the whole year group do it together so she does it or not.

She wears insoles in her shoes and Brownies help her to move them between them. School won't help her so they end up in the wrong shoes (because even with L and R on them her dyspraxia means she gets confused)

School won't give Calpol, Brownies do. School won't let me see the menu before she goes, Brownies go through it with DD and help find alternatives, I am always happy to pay for these but it's never been an issue with Brownies - we're talking no hard crunchies foods like crisps, raw carrot, hard sweets. She also can't eat anything that may be really hot in the middle but cool outside like pies as she always burns her mouth. Brownies source her an alternative snacks, or hers is plated first and left to cool down. School say they can't do that because theres 89 other children to think of.

This is beautiful and heartening to read. I am so happy for your daughter that she has found a supportive and empowering group!

Maybe send this in a letter to the head of the Brownies association..?

I feel the same about my daughters leaders, I call it the cult of <<brownie leader>> all the girls adore her and the leaders, my youngest is a rainbow and has additional needs and when I think she won’t cope they always include her and give me so much confidence, its the best thing we’ve ever done, joining, it’s so inclusive and the kids get so many opportunities.

School are being really really useless. There is nothing on that list of accommodations that make taking her beyond school's capabilities.

I would be making some serious noise if they refuse to accommodate her in future. Complaints to the head, governors and ofstead. That is nothing short of disability discrimination and pure downright laziness of the part of the school.

they sound lovely

Those Rainbow and Brownie leaders sound like special people. I'm glad your DD gets a turn with the other DC.

Great idea! Get it out there!

Brownies, Guides and now Rangers have made such a difference to my youngest daughter.
She is now a young leader with aspirations to run her own pack eventually.

Another one crying here. That is so special.

This made me cry too! Thank you for sharing OP, I’m so happy for your daughter that she’s had such amazing experiences. The volunteers in Guiding and Scouts give up so much of their time to enrich the lives of our children, they definitely don’t get the recognition or appreciation they deserve.

As a Scout leader it sounds like the sort of thing we'd do so a child can come on camp. Every child deserves to have the same opportunities as their peers. Your brownie leaders are fantastic.

It's such bollocks that the school are saying they can't do it, or the centre can't do it. My son has SEND and went to a special school, they did a residential trip to the same place my kids at mainstream school went to and it was all adapted for them. Most of the activity centres I've been to have been happy to adapt things for kids with additional needs.

Scouts have been great for my boys, one of the reasons I became a leader was to give other kids the fun and opportunities mine had.

Aww what a lovely, positive post! (Apart from the school part)
My daughter was a Rainbow, Brownie and now a Guide (she's says she going to be a ranger too) It's been wonderful for her.
My son has SEN, I wish he'd have had had the Girlguides! He has found a much better community since becoming an adult. Again, run by volunteers. The angels of this country are the volunteers. They are the ones who get things done and make communities better! Nobody on the payroll cares quite as much as the people who are doing it, purely for the love of helping people in the community.

Lovely to read. These are the sort of people who should be winning awards like OBE ‘s not celebrities in my view. As a school we have managed to take away pupils with severe disabilities including in wheelchairs, who have taken part in lots of activities ( centres are usually really good with inclusion and modified activities). How can your school get away with it?

That’s absolutely ridiculous. Those are trivial - there’s children our school has taken on residential using nappies, T1 diabetic, there’s a child that uses a walking frame… and your child’s school is arguing they can’t help her with shoe inserts or tell you the menu?! I’d raise absolute merry hell with them, it’s sheer disability discrimination to leave one child out over such basic things.

Agree with rudolphthedog disability discrimination, they are very trivial matters in the scheme of things. I have given all sorts of medication as a staff member / teacher on a residential trip, as long as you have parental permission’s in place.

I have lot's of dealings with many scouts and guide troops and they are, without exception, the most selfless, caring and supportive bunch of adults and young people I have the pleasure of working with.

@LoveTheLeadersAndVolunteers I don't know if you've tried it, but for anyone like your daughter who struggles with left and right for shoes or insoles.....either 1) draw one picture across the two insoles such as a smiley face - when they are put together side the correct way, the picture will be completed. If the wrong way, picture should clearly show that. 2) could draw a small picture on the insole on the left and the same picture on the label under the tongue or inside of the shoe. Either do a different picture on the other shoe and label, or same picture but a different colour then again they need to match them up. Wouldn't be too hard to combine both....so draw a red smiley face in left shoe and left side of smiley face on red on the left insole. Draw blue smiley face in right shoe and right half of the face on the right insole. Easier than symbols or words and no-one will actually see anything but hopefully leads to a little independence within that area....and so confidence :)

Just echoing all the other posts that while it is beautiful to read how Girlguiding has made such a positive impact on your DD, I'm really disappointed to read about the school. I'm not a complainer, but in this instance I think I would take this further (governors? Academy trust if part of one? ) because she shouldn't have to miss out on more.

🥰 lovely post - very disappointing from the school though

Rainbow guiders here. Like others have said sounds standard behavior for Guiding/scouting and nonsense from school. Perhaps let your County know how fab your leaders are

Great to hear, that's lovely for your daughter.

That is really disappointing from the school, though.

Whilst its great the brownies do this ...
It does sound like some of your requests are maybe over the top. Unless severe issues a child would understand not to eat hot pies or cut them up. That doesnt sound like my understanding of dyspraxia. And if not surely a reminder before she left for a trip.
The shoes could be labelled and insoles with something else but again a label should be enough if it matches on both. Im sure school could help as they would if a child couldnt tie laces.
I would just send own snacks!
Not really relevant but seems more like you are describing academically behind? Or other issues (asd is common with EDS)
They should be able to do the calpol - our school had a whole box of meds.
And they should work it so any child can sit out an activity.

Though if she struggles with an upstairs room im surprised an activity centre generally is something she wants to do. So not surprised they are skeptical as in say she cant get up/downstairs but wants to rock climb. (Though understand reality is different).
Does she use a lift at school/when she goes to secondary?

I would focus on what is actually a need.

So she wants to stay overnight?

Get extra insoles? If not too expensive.

Unfortunately our experience with sen and guiding was even worse than issues with school. The leader asked her to leave once they knew she had sen.

My dd is having asd assessments- and school were refusing to take her on the y6 residential. God knows what they thought the issue was going to be - i think maybe a refusal by dd. Ironic really as the wouldnt support assessment or ehcp. If they had we wouldnt have been in that position at y6.
She went and was ok - better than behaviour of several other kids. Did refuse one activity as exhaused/didnt want to get wet.
School didnt get her to put any suntan lotion on day 2 which was like 30degrees.

She then went on scouts and they were better but again she didnt put lotion on. She also didnt sleep till 3am.