To think this woman has no business being so involved?

[User3billion]

I'm a parent to a child with Down syndrome & as such I'm on several parent support groups.
I help admin a group for new parents and it's recently come to light that one of the other admin isn't a parent of a child with Down syndrome, in fact she has no link to anyone with the condition at all. She's never explicitly said she has a child with Down syndrome she just allows people to assume that's the case.

This woman gets annoyed with parents who stay in the group if their child is older than 18 months telling them it's not the group for them. She doesn't let people join who are outside the UK (she considers the Channel Islands to be outside the UK) as they don't belong.

Am I unreasonable in thinking she's the one that doesn't belong?

Sorry, lots of people have had the same thought.

If it's only a group up to 18 months, then you will get members moving on all the time (not to mention busy with their own children with the condition), and nobody left to keep things going - so an admin person who is both longer-term and doesn't have children with the condition, let alone in one age group, might be ideal. It doesn't mean that she might not have lots of good advice or ideas of support/resources to point people towards, and she might be very helpful and keeping the group running so that those with personal experience are able to help others at a similar stage. Maybe she had some particular interest in it and wanted to volunteer or help out for some reason, which doesn't sound so unreasonable. If she is posting advice and saying it is personal experience, though, then that is different if she doesn't have a child with that condition - if she is actually lying or pretending that she does, then that seems unreasonable. I'm sure most people will figure it out, though, if she's been there longer than 18 months.

I don't think this is too odd, she probably enjoys the authority that comes with being an admin of an active fb group. It's like having a small place of "your own" to manage and it gives them a feeling of power, respect and probably happiness that they don't get from real life. Of course, unless she comes out and lies about having a child with DS then she's not actually deceiving anyone.

That being said she sounds slightly annoying with enforcing the rules which enforces the theory that she's doing it for the feeling of power. Excluding people from outside the UK sounds most problematic to be honest. Even though services might be specific to the UK there are plenty of parents outside the country that might need help in english and UK/US groups are obviously the most active ones on FB.

@PerhapsInchyraBlue

It may be slightly odd but I would agree re the. Channel Islands simply because they have a very different health care set up so advice needed may vary significantly.

Not sure what you mean by this? Channel Islanders pay to access some services, mostly primary care, but other than that, there are not huge differences. We have health visitors, baby clinics, children with disabilities social workers, short breaks, portage etc. Any child requiring high level medical care eg heart surgery would be treated in the UK in a tertiary care centre or Southampton.

The entire Channel Islands population is well under 200,000, so although there are DS organisations offering support, it makes sense that new parents might want to access a larger pool of peer support while navigating through the first 18 months of their child’s life.

@User5485421134

I don't think this is too odd, she probably enjoys the authority that comes with being an admin of an active fb group. It's like having a small place of "your own" to manage and it gives them a feeling of power, respect and probably happiness that they don't get from real life. Of course, unless she comes out and lies about having a child with DS then she's not actually deceiving anyone.

That being said she sounds slightly annoying with enforcing the rules which enforces the theory that she's doing it for the feeling of power. Excluding people from outside the UK sounds most problematic to be honest. Even though services might be specific to the UK there are plenty of parents outside the country that might need help in english and UK/US groups are obviously the most active ones on FB.

It's odd if you don't have a child or any family members with the condition as parents often join these groups for support and to be able to relate to People who know what they are going through , It would like me being an admin for a motor cycling group ,having never even ridden a bike in my life.

I admin a Weather group, I am neither Micheal Fish or Mother Nature, It doesn't mean I don't know what I'm talking about.

@x2boys but OP hasn’t really said what this admin does, other than police the rules of the group.

But if you were the admin of a motorcycle group, and you just occasionally posted, “this is MotocyclesUK - can you please not add chat about pushbikes / the new law on emission tests in Brazil” then that wouldn’t be bad.

It would be odd that you even ended up adminning the group of course... but whereas as you tell us you’ve never ridden a motorbike, OP doesn’t actually know that this woman has no DS link in her life.

It is deception by omission.

How do you know she didn't have a child with ds and they died?

exactly what I was going to post! It's a horrible judgemental view to dismiss her when she is the one doing the work. Even if the Channel Islands bit is a bit weird.

Or it could be a niece, a sister.. Trying to make it a competition when the whole point is support is a bit sad.

@User3billion what do you actually mean, “it’s recently come to light”? You make it sound like a detective style reveal of a murky concealed situation.

This woman has never lied, from what you’ve said.

What is the opposite to letting people assume? And is it letting? Is she responsible for people’s assumptions? Is she supposed to put in a sticky, or under every post she writes, “btw, no direct experience, I joined this group as I’ve shears been interested because my gran had a sister with DS who died very young and there was no support.” (or whatever led her to the group)

If it’s not her group, somebody made her admin 🤷🏻‍♀️

I think you’re swimming in really dangerous waters here op. You don’t know why she joined, or why she was made admin. She could have lost a child to downs, she could have lost someone close, a sibling, and she’s not sharing it widely.

This is one of those situations where you act and then someone says, oh my god, she lost her child, what’s wrong with uou. And then you’re all blustering and crying you didn’t know.

You don’t like her style, that’s fair enough, but I’d tread very carefully. It’s the sort of thing that comes back to bite you hard.

I think you need to separate the two issues: you think she’s being overly officious and you also think she has no connection to Downs.

Personally I don’t see a problem with reminding people about ‘the next group up’. Sometimes trying to keep a neutral tone can come across as blunt perhaps?

As for having no connection - are you sure? She could have or have had a sibling with Downs, or an aunt or uncle, etc. I’d tread very carefully here.

I personally wouldn’t like this.

The group is for parents of babies and young toddlers with Down syndrome. I would expect the admins and the people who run and manage the group to have lived experience of it - that doesn’t mean they HAVE to be a parent, perhaps they have academic and work based experience, perhaps they have/had a sibling or a family member or have fostered children in the past etc.

If there is ZERO connection then it’s really weird sorry, of course you can have an interest and an empathy and to want to support parents and children with all types of challenges - that is great. But to present yourself as having direct experience (by omission) is dodgy and I would feel the same as you OP.

Perhaps you could ask some well worded, sensitively approached questions? To try and dig a little.

It’s a safe space for people with a common challenge - it shouldn’t be open to those who don’t share it, sorry.

I think the difference might be in what way it is 'open' to her - if she is actively posting and seeking support for her child with a different condition, or for herself as a parent, without mentioning that she doesn't have a child with that condition, then that could be more of a problem. But if she's just running the group, not actually using it as support herself, then it's not the same situation. I don't think it would take away from the 'safe space' feeling if she was just an admin (even if not well liked!) - that could still be a useful role to facilitate a continuing group for people who are in a particular situation - depends a bit on who set the group up and why/how it's provided. But if she's posting for support herself, and implying by omission that she is part of the group who needs support, then that does seem intrusive.

Unless she is overstepping her bounds as admin and actively participating, then I don't see that there is a need for probing questions, as she presumably has some interest, for whatever reason, in volunteering to do this (I think being a group admin can be a very thankless task at times!) - the reasons could be extremely private. Different if she is actively participating by deception, of course, but even still, it won't go on longer than 18 months! Are there lots of people who would rather take over as admin? Will she not allow them to, or to share the duties with them? Is the group affiliated with some sort of organisation? If it's just a random group, then the people who want a safe/private space could start a new one - it takes nothing to do that on many platforms.

Those posters who are so against that admin, remember your attitude the day you complain that your child is faced with a poor attitude from others, and experience more rejection than inclusion.

just remember what it feels like, when you are judging a woman you know nothing about. If might not be, but the first thing that came to mind is that she doesn't have a LIVE child at present.

You don't know what her link to DS is.

A aunt/uncle/cousin/sibling/niece/nephew or possibly even a deceased child.

Has she possibly worked with children/adults with DS.

Maybe she has a close friend with a child with DS that she supports.

Alternatively she could just be someone who wants to help.Someone I know is heavily involved with a charity set up in memory of a teenager who died from cancer and said charity raises money for research into that type of cancer.This person didn't know the family nor has she had any personal tragedy connected to cancer;she just wanted to help.

Probably no one else wanted to do the admin.
If its like any other groups/clubs, people want it organised but dont want to do it themselves.

Some of these posters are putting 2 + 2 together and getting 10. Chill out.

If she has no link at all to DS in anyway shape of form that's just weird.

Is she an admin? Do the other admins know how she came to be there? Sometimes groups make exceptions for people with particular expertise - I know of one or two SEN groups who welcome people like lawyers with SEN expertise although they don't have children with SEN.

Unless you're going to offer to take on more of the admin chores and/or recruit a replacement admin, YABU. Group admins are volunteers who do thankless, unpaid chores to benefit the wider community. Few people actually want to do it so it frequently ends up with the same small volunteer pool covering multiple FB groups (or, indeed, multiple RL local activities). The only prerequisite is an interest in donating your time - it is a valuable bonus if you also have specialist knowledge of the topic.

The Channel Islands aren't part of the UK though, she's right. That's why they were never in the EU for example.

If it's a UK group she's correct to refuse entry to people from the Channel Islands - else where do you draw the line? Isle of Man, Ireland, USA?

@skirk64

The Channel Islands aren't part of the UK though, she's right. That's why they were never in the EU for example.

If it's a UK group she's correct to refuse entry to people from the Channel Islands - else where do you draw the line? Isle of Man, Ireland, USA?

If it's a support group, though; does it really matter?

I know exactly which group you are talking about and so couple of things:

1. The founder and other admins have been just as 'blunt' around people moving up to the next group when they spot a post that belongs there. They do this to keep the chat baby related, not toddler related.

1. That person's post was reposted by an admin (possibly the same?) on the next group up so the parent would have instant answers and feedback when they transfered to the new group.

As for the imposter issue, if someone is taking the time to help out with the administrative side of a charity related FB group, obviously the founder / organisation trusts them. If they're not actively lying about things or misrepresenting themselves I don't see a problem.
Charities and support groups are extremely difficult to maintain with volunteers, don't begrudge anyone helping out.
YABU

@skirk64

The Channel Islands aren't part of the UK though, she's right. That's why they were never in the EU for example.

If it's a UK group she's correct to refuse entry to people from the Channel Islands - else where do you draw the line? Isle of Man, Ireland, USA?

No, but they are in the British Isles and have a lot in common with the UK. It feels very nit-picky to exclude the handful of people living there who might want to get some support at any one time. I'd also include the Isle of Man and Ireland personally.

It's really important to move people on to age appropriate groups. I will never forget going to a breastfeeding support group for the first and only time. I was seriously struggling with feeding, was in pain and generally desperate for help.

There was only one other person there with a newborn, it was full of toddlers and preschoolers running round, I had to sit on the floor at the regulars had the chairs. The parents were there for a chat as they had all been there so long and the supposed breastfeeding support workers were just part of the NHS funded social group.

I ended up sobbing on the phone to the midwife who had recommended I went.

Age recommendations exist for a reason.

I would imagine this volunteer has reasons for her connection to DS. Is she actually doing anything problematic?