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Is this Discrimination (ASD related) Very upset

(102 Posts)
Aeroflotgirl Thu 20-Nov-14 11:45:14

I am so upset I don't know where to start. DD 7.5 has just started Brownies 2 weeks ago, she has ASD and is supported by a carer. The Brownie leaders work in an Autistic school during the day. I received yesterday a text from her carer telling me that the Leaders wanted to give the children a talk on dd condition without her being there. This was 2 hours before she was due to start her session, so I paid for care she did not need as it was under the 24 hour cancellation period.

I was really upset, as it should not take 1.5 hours to talk to Brownies about her disability. I tried to contact the Brownie leader a few times and left a message. I then contacted the head of her care agency who knows the Brownie leader. It transpires that parents of Brownies have had issues with dd behaviour, like the stimming, hand flapping, and getting too close to children's personal space and the district commissioner as asked that the Brownie leader give a talk to the Brownies about ASD. DD goes with a carer who would have relayed to me if she had been violent or emotionally abusive which she had not, she does not display that type of behaviour. Both her sessions at Brownies have been positive, so I can imagine it was dd unusual behaviour. Apparently couple of girls have left the Brownies for no reason, which I presume because of dd.

I feel so hurt that others feel that way about dd, if she was in a wheelchair or had a disfigurement they would not get away with that, its like we have not progressed 40 years. Anyway dd is going next week with her head held high, these are not her issues and she has nothing to be ashamed about.

I am drafting a letter to the District Commisioner and head of Brownies and Girlguide in my area, it has been handled so badly. No representative from our end was asked to attend the meeting to see what was being said about dd. She was in a different Rainbow pack with a more experienced leader, and we had no issues, parents were so positive. I feel so upset

RachelWatts Thu 20-Nov-14 11:50:30

Well I think that if some of the other girls have been unkind or not understanding, then someone probably does need to talk to them about ASD and other invisible disabilities.

It sounds like it could have been handled a lot better though.

Aeroflotgirl Thu 20-Nov-14 11:53:32

But not to tell us in good time, or allow my dh or myself to be present to see whats being said when dd is not there. Also girls leaving since dd joined, I hope she does not get bullied to leave. It was handled really dreadfully.

ouryve Thu 20-Nov-14 11:55:40

it does sound very much like tongues have been wagging and that a "her and us" situation has arisen. No doubt they'll claim that the long session on ASD is very much the opposite, but the time devoted is excessive in the context of a group that meets once a week and is probably doing nothing to address the specific issues of this child with ASD. Of course, you've not been given any means of finding this out, since you've not been invited.

Of course, the question would be, given the way this is being handled, would you feel comfortable with her remaining within this particular group?

ChimesAndCarols Thu 20-Nov-14 11:57:15

You can't stop people leaving, for whatever reason. My son has ASD and we spent many a day on the beach where people near us packed up and went further away. He had a dreadful time at primary school.

You get used to it (although you really shouldn't have to). Be thankful the Brownie Leader is trying to make the other Brownies understanding the condition.

skylark2 Thu 20-Nov-14 11:58:28

I'm not sure it's a bad thing - it's a shame that she's missed the whole session, but I think it may work better for them to have a week to think about what they've been told than if your DD walked in five minutes after their little talk finished.

Why do you think they were talking about your dd? From what you said, I would assume they were talking about ASD in a much more general way.

My son's Scout troop has a little boy (well, quite a big boy now) with Down's syndrome, and before he started it was explained to them what Down's syndrome was with general reference to how it affects this kid (for instance he signs rather than speaks). But it wasn't "things being said about" him.

I hope (and suspect) that next week your dd will find the other kids much more understanding and friendly.

Idontseeanysontarans Thu 20-Nov-14 11:59:50

Why didn't the leader want the carer there? Surely either you, your DH or the carer would have been the perfect people to talk to the Brownies in the first place?

Marcipex Thu 20-Nov-14 12:00:23

It sounds as if the group does need some help understanding. But a whole session? That's ridiculous.
Surely you could have been asked to arrive 20 minutes late? Or something. And they should have consulted you for your input , and let you know what the talk consisted of.
it's tricky though. The adults are volunteers. An employee would probably have more training.

Idontseeanysontarans Thu 20-Nov-14 12:00:31

Sorry just read where the leaders work.. Ignore me blush

NeedABumChangeNotANameChange Thu 20-Nov-14 12:00:59

Not everyone understands asd. It sounds like a good thing the brownies are trying to explain and teach the other girls. Other girls leaving sounds the opposite of your daughter being bullied into leaving. If your dd does invade personal space this could upset other children even if she is not being violent or emotionally abusive. Her normal behaviour would not be mentioned by her carer to you because it is no different than every other day but to young children who have never encountered it before it is probably very different.

Your brownie leader could have handled it better but it sounds like it can only be a positive for the children to understand how your dd's mind works slightly differently from theirs.

Aeroflotgirl Thu 20-Nov-14 12:39:48

Yes I understand a talk us needed that's fine, but they way it was handled by the district commissioner who told tge leaders to give the talk without dd there. Well it's sorted now as the leader called me and said the talk went well, and the Brownies missed dd very much.

WooWooOwl Thu 20-Nov-14 12:44:26

They should have told you before, and that was handled badly. They should also have spoken to you to be able to make the most out of the talk that they were going to give the brownies, surely it would have helped them to be able to give them strategies that work personally for your dd? But then maybe they wanted to not focus too much on your dd and be a bit more general about it.

I understand why you're upset, but I think you do have to bear in mind that the leaders are volunteers, giving up their own free time, and they will presumably have jobs and families of their own so planning thing perfectly for you isn't likely to be top of their list of priorities. They sound like they are doing their best, and that should be appreciated.

You don't know I that other brownies left specifically because of your dd, but if they did, that's their problem. Behaviour that goes along with ASD can be difficult to deal with for adults, let alone children.

WooWooOwl Thu 20-Nov-14 12:45:42

It might have been better for the others for the talk to have been done without your dd there so that they could ask questions without feeling like they were being rude.

blanklook Thu 20-Nov-14 13:11:15

Kids can be horrible about anyone who is different. I think the Brownies leaders did the right thing in explaining to the others. also, it was much better that your dd was not there, so they could freely ask and answer questions.

In some schools, this is done if a child is different and the others are commenting and/or behaving adversely towards them. I was talking to one Mum in a very rural area and she said that her dd was AS and that the primary school teacher had held a session for her class prior to her starting there, telling the children that her stims etc. were acceptable behaviour for her and promoting her inclusion. that mum was delighted that it made her dd's differences acceptable to the class.

As her Mum you are used to her being herself - which is as it should be - but you are probably not aware of how different she appears to a group of other kids and parents, who, knowing nothing about her condition will be apprehensive at some of her actions like invading personal space etc.

Have a word with whoever did the talk, ask what was said to put your mind at rest. I'd also doubt if it was focused on your dd as opposed to a talk about ASD and toleration plus awareness of disabilities and differences.

raltheraffe Thu 20-Nov-14 13:18:23

This is totally unacceptable. DDs condition is confidential information unless you say otherwise.
I have bipolar and lost my job as a doctor in a disability discrimination lawsuit which I won. One of the points in my lawsuit was the fact the consultant I was working for took it upon himself to inform other doctors and senior nurses about my bipolar without my consent.
Yes it is obvious DD has a disability if she has a carer in tow but it is none of the other children's business what the disability is.
What has happened contravenes the Equality act and I would sue.

ClawHandsIfYouBelieveInFreaks Thu 20-Nov-14 13:18:54

Did they tell you a couple of girls had left for no reason? I have to tell you that you might be worrying over that for nothing. My DD aged 10 just left for no reason...well it was because she had a term to go before guides and she felt too big for brownies actually but to an outsider it might appear as if it were for no reason.

I don't think YABU but I do think they're trying...allbeit in an overly zealous fashion.

aermingers Thu 20-Nov-14 13:19:53

YANBU about the money. You should be explaining that you lost out financially and requesting that the cost is refunded.

I think much of the rest of it you are being unreasonable. Could you imagine how embarrassing it would be for your daughter to have to sit with her mother and carer while her condition is discussed in front of other people? It would have been absolutely mortifying for her to have to sit through that. Also it would have been counterproductive as it may well have stifled discussion and stopped the other children asking any questions they had which would have lessened their understanding. It may well also have increased the potential for any bullying as the other children may well have got the impression that they were being told off while your daughter was allowed to watch.

Children by their very nature are often unaware of this sort of thing and need it explaining to them and to be able to ask questions and come to and understanding. It's not nasty doing that, it's sensible. I think your daughter will have a much harder time if you expect to go through life with people mind reading exactly what her diagnosis is and know exactly how to deal with it. You seemed to expect the other children to be 'told off', but they've not done anything naughty, they simply just don't understand and needed it explaining.

You say Brown Owl works in an autistic school and it sounds like she may well be sympathetic and had have knowledge and experience which can make your DDs time there easier and more enjoyable so it would be a shame to destroy your relationship with her over one incident which seems to have been slightly badly handled.

You also don't know that the other children have left because of your DD and you are making a big leap in assuming that they did. If your daughter has only been for two sessions and there have been no major issues I would be very surprised if that was the case.

Ask for the Brownies to refund your losses but otherwise I think it's going to be counterproductive to make an issue out of this and may simply poison the atmosphere for your daughter in her Brownie pack needlessly.

ClawHandsIfYouBelieveInFreaks Thu 20-Nov-14 13:20:54

Oh and re ASD and Brownies, my DD's best friend in Brownies has ASD...though DD has left, they still meet up with the other child's Dad who takes them to the local park. flowers The children aren't judging DD....they're at least armed with information now and that's a great thing....education is everything when it comes to inclusion for our many children on the spectrum. (and adults!)

Bulbasaur Thu 20-Nov-14 13:44:33

A talk is good, and perhaps DD shouldn't be there so they can be comfortable asking questions. Brownies is still young.

But.. you as the parent should be there to facilitate discussion too so that you can explain your daughter's quirks and why she does certain things. No one is going to know your daughter better than you.

The way they went about it is wrong. It's like they went behind your back to gossip instead of including you in on a discussion about your daughter.

Aeroflotgirl Thu 20-Nov-14 14:41:31

Exactly, I felt that it was total miscomunication. The Brownie leader is very new to this, but works in the ASD field so should have known how to deal with parents and issues such as this. I haven't had a direct communication from her as yet, this has been relayed to me through a second party which I am not happy about.

DD used to go to Rainbows, and her leader was fantastic, she is the District commissioner for another local area, and has offered dd a place in her Brownie unit. She also works with Autistic children too, and dd knows her and likes her very much. The reason why she did not initially go to her unit, was because they did not have a place at the time, and this new one was smaller and easier due to dd Autism. I will put it to dd, and leave the choice of where she wants to remain with her. Brownie group A where she is at now, or Brownie group B which the leader knows her very well and is fantastic with her. This would never have happened with her old leader.

Aeroflotgirl Thu 20-Nov-14 14:46:27

Yes I understand, they are volunteers of course and give up their time, but one would have expected this to be handled better. Her old Rainbow leader said that it was not handled very well by the District commissioner or the Leader. I think it wasen't due to the Brownie leaders inexperience. No it would have been nice for either, myself, or dh without dd there to be present. I am going to ask dd which unit she prefers.

Marmiteandjamislush Thu 20-Nov-14 16:42:04

That is horrible OP, and I understand you feel upset, but from what you've written, sadly, it sounds like the parents who needed the talk not the children! as is so often the way, unfortunately So I think the troop leaders were just trying to appease them, which is pathetic, but not 'discrimination' in the legal sense as the have not treated DD in an unequal or unfair way because of her disability. You are absolutely right to write a letter to raise awareness of DD's issues and to say you feel it has been badly handled.

I have to say though, I don't think a child who uses a wheelchair would have a better experience, as it sounds like a very narrow minded troop. My nephew has CP and is a non verbal full time wheelchair user with high muscle tone, and he hoots and squeals when excited and we have had similarly negative experiences!

Feel free to PM though, I work in disability law and rights and would be happy to help if I can.

Aeroflotgirl Thu 20-Nov-14 17:14:47

I know marmite. She has been offered a place at her old rainbow pack as a Brownie and her leader who knew her from Rainbows çoukd not be more professional. Never had any issues whilst she was a Rainbow. I think the leaders if her old pack wanted to seem to be doing something. Tge communication from them is appealling. All this information was relayed to me not be her old brownie leaders, but by her carer who works with brownie leader in her day job.

Marmiteandjamislush Thu 20-Nov-14 17:28:35

If the leader works in a SS, could you not speak to the school? Perhaps they can organise a community link thing?

PolterGoose Thu 20-Nov-14 17:34:08

Message withdrawn at poster's request.

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