Daughter (ASD) at Brownies

[Sweetlullaby]

My daughter is 9 , has autism and brain damage from a very premature birth. However she is in a mainstream school and thriving and we are honestly beaming with pride.

She joined the local Brownie group and i decided to volunteer too, so that I would also be on hand to help if she (or of course anyone) was struggling. I thought something like this would benefit her, but all I have seen is one of the worst versions of her every week. The evening is spent with meltdowns for most of the session.

She hates not being any in sort of control and won't leave the leaders alone. There is no reasoning with her.
Obviously with these type of groups there is a lot of team work and games, and she gets so outraged at not being first, being "caught" in a simple game of chase sends her into a meltdown. The church hall we are in probably doesn't help much, the noise and echo has always had her on edge (we've tried the ear defenders and she wears devices for hyperacusis) . It always feels like a recipe for a disaster.

We're talking sleepovers next year and I know I won't allow her to go. Shes still in nappies for a start (which we are working on with the incontenince clinic)

I feel like I've signed her up to something that just doesn't benefit her, but when I tell her I'm thinking of pulling the plug on Brownies she does get upset. Maybe selfishly, I just cant handle what is now the worst day of the week for me! I always go home after the session feeling like I've done a few rounds with Mike Tyson and just cry. I'm hating it all.

The thing is, the school promise she isn't this way there, and tbh I do believe them because it is a routine, everything is expected and familiar.

Another awkward part is her little sister (no SN) has also just joined, and she actually cant stand her sister in that environment and constantly asks to be placed in groups away from her. Other girls are complaining about how nasty my oldest can be in her meltdowns and I dont want to be tip toeing around my daughter whilst these other girls should be feeling they have a safe space!

Should remove my oldest from Brownies? Even although she says she likes it, I cant see how she is benefiting from what seems like the worst part of the week for her too!? She can't communicate what it is that upsets her, and I want her to be able to make her own choices in life too! I just feel like a monster :(

It’s hard to balance the needs of both your children, but from what you’ve posted it sounds to me as though you should let your younger daughter do Brownies and find a different activity for DD1.

My son who has ASD is like this. He is completely different in different environments. He is largely well behaved at school and his afterschool club and very happy there and at ease and happily engaged with the world.

I take him to a club at the weekend where his behaviour is not great although he says he likes going there. Its a club for children with autism but he gets annoyed when they even suggest doing something that involves following instructions. I mostly let him do things his way there as long as he's not interferring with anyone else as its his club and he makes enough of an effort following instructions in school. He talks a bit rudely to the people managing the club although I try to show him how to respond in a more pleasant way. He also kind of goes in to himself and switches off and becomes very distant. It doesn't bring out the best side of him.

The only reason I keep going is that its nice for me to chat to the other parents there as they understand the issues we face. Also, DS says he wants to keep going. Its a bit easier in a club like that as all the children have issues so the organisers and other parents and very understanding.

I've found overall though that life is easier if we don't try to fit our square peg DS into a round hole. Its much easier to follow his lead and do activities that he enjoys even if these don't involve socialising closely with others. DS loves activities where he can use up his physical energy but not have to follow instructions - so we go hill walking, or mountain climbing (small mountains!) or swimming. We're starting canoeing soon too.

It's possible she's just used up all her social and coping capacity during the school day, and, much as she wants to be a Brownie, she just doesn't have the reserves left to draw on. It's a shame but maybe look for something perhaps on a Sunday morning when she's got more capacity to enjoy it.

I'd take her out. Iv had to find what my boys like by trial and error. One loves swimming but he couldn't cope with class so has 1:1 lessons. Two of them love beavers and cubs but third can't cope. Two love football but different third can't cope with all the kids and parents.

Could u step back as volunteer? Drop younger dd off and spend some time with older dd instead doing something she enjoys.

Thank you everyone
All the waves I think that is my plan. I probably need to find an alternative, as she will be in bits seeing her sister go and not her.

We actually got up and met the group at 8.30 for an outdoor day last Sunday and she had a completely meltdown just being told to stand in a line to get on a bus. I just wanted to cry

Offer her something else at the same time and see if she wants to swap.

Don't just remove her from Brownies. It's like you're punishing her for being autistic if she wants to go but her meltdowns mean she can't. I think it might make me feel very bad about myself.

But give her the decision and make the alternative very attractive!

I managed to have a chat with her and she did managed to tell me it was loud and began to cry. I suggested that her sis could go to brownies and we could go try something else. Her eyes did light up and she insisted on making a list with me tonight so I think her mind is made.

I always want her to lead with the decision making. I think that's really important. She doesn't understand she has autism at all.

Ah, that sounds good. She sounds lovely and very sensible.

There's some good stuff from the NAS about telling children about autism BTW. It was a huge success with my dd who was about 4 or 5. It made her much more able to point to things being unsuitable ("that was not very autism friendly") and thus I think less prone to think she was at fault for not enjoying things etc.

Thank you! I’ll take a look at that. I just don’t quite know if she’ll understand within the next few years. She views the world so innocently still and her school friends all understand :)

As a Brownie leader, I'm sorry to hear that your daughter is struggling at Brownies, particularly as it seems like as a parent you've been doing everything you possibly can to make it work. Girlguiding really welcomes children with special needs and unit leaders should do whatever they can to cater for the children, as hopefully your unit leaders are. It's just a small thing, but I recently took my Brownies on pack holiday. We had a couple of girls using pull ups which we managed discretely and they loved the trip. I just wondered whether there might be some sort of half way house which might suit your daughter. It might be worth looking into independent guiding www.girlguiding.org.uk/making-guiding-happen/growing-our-membership/recruiting-and-retaining-girls/independent-guiding/ which is flexible guiding to suit your needs. It might be worth exploring with your daughter's unit leader if she might be able to remain connected to the unit but do some of the activities at home.