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?

@Noidlet that certainly presents it differently! What a nice thing to do, moving the question into the next age band group.

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

The op doesn’t know she doesn’t share it. As everyone is saying she could have lost someone with downs. What’s the rule if the person dies then you need to resign and leave ? Of course that would not be ok.

The op is making assumptions. And they could be very erroneous indeed.

OP you are the one sounding officious. Be very careful about assumptions and accusations.

i have a child with CP, I wouldn't want to join a support group run by someone who does not actually have a child with CP.
people with siblings/ relatives, don't know what it is like to be an actual parent of a child with a disability.

So true @Samcro!

@Samcro

i have a child with CP, I wouldn't want to join a support group run by someone who does not actually have a child with CP. people with siblings/ relatives, don't know what it is like to be an actual parent of a child with a disability.

But presumably it’s a useful group, as people are in it?

Would you really not join a group full of people who have experience of CP, with a wealth of information and support, just because one admin person doesn’t have that experience? Especially if their input to the group is purely administrative, and they’re not giving any advice from their (lack of) personal experience?

Isn’t that like not wanting to post on MN because the person the manages the programme that deals with password resets isn’t a mother?

OP really hasn’t said that this woman is overstepping the mark in her posts.

but do they need to know that, in order to be an admin of a group? I think it hugely depends on exactly what the role involves, and whether it is acting as a source of advice based on personal experience, or a source of advice based on knowledge of resources that people can be sign pointed to, or an active participant in a group on an equal level with other participants. The answers might change greatly about whether someone would feel comfortable in a support group run by that person, depending which of these scenarios were involved.

If it's a baby group, and people only belong for a year and a bit, you will constantly need new admins, and there may be little consistent experience of doing that that can be passed on, whereas if someone slightly removed from the situation is moderating, then can keep a group functioning in a consistent way from year to year, which could be important if it's part of an organised 'series' of groups.

@Cocomarinenit if it was a support group for parents.

How do you know she hasn't lost a child that had down syndrome?
Surely you can't know everything about her

@Samcro but a health professional or sibling could also offer useful advice depending of what os being asked ? And this lady may of had a child how would anyone know ? Plus all groups need admin and it seems that is what the lady is doing providing admin , keeping the group on track

Not all drs have any of the conditions they treat

Dentists don’t often have dental issues

Speech therapists may not have or know anyone with speech issues

Yet all of the above that I know have social media heavily influenced by their occupation/interests

This woman is running a support group and trying to keep it on topic for new parents I think she’s doing something helpful and you want to call her out and potentially lose a person who is supporting others

@samcro

It's a support group for parents but also includes moderated professionals that have experience or specific knowledge. Eg. Physios, optometrists, bowel specialists etc. If this admin is literally just administrating, signposting to the relative experts then it shouldn’t be an issue that they are not a parent of someone with that specific diagnosis.

@Constantcrayfish @GreyhoundG1rl
This group is run by a charity currently registered in England, Wales, Scotland and Northern Island. Might be a Charity Commission thing that makes the distinction, as Jersey & Guernsey both have their own body. There might be some rules / guidance that we don't know about.

I have to say that despite my support for the poor excluded islanders who need other parents to talk to, I do agree that it sounds like you think she keeps to the rules because she can't empathise, when in fact the rules just sometimes need to be there for things to work. Do you think she doesn't express herself kindly enough? Is there a conversation to be had with her about her style?

@Worriedatthemoment,as the parent of a disabled child,I have found the most support from parents who know what I'm going through ,and get it ,sure it's great to have advice from health professionals,and I have had support from the learning disabilities,team ,my child's special school,OT etc but they are giving professional advice sometimes parents just want to speak to people who are experiencing the same things as them .

[quote Noidlet]@samcro

It's a support group for parents but also includes moderated professionals that have experience or specific knowledge. Eg. Physios, optometrists, bowel specialists etc. If this admin is literally just administrating, signposting to the relative experts then it shouldn’t be an issue that they are not a parent of someone with that specific diagnosis.

@Constantcrayfish @GreyhoundG1rl
This group is run by a charity currently registered in England, Wales, Scotland and Northern Island. Might be a Charity Commission thing that makes the distinction, as Jersey & Guernsey both have their own body. There might be some rules / guidance that we don't know about.[/quote]
Seems unlikely that the Charity Commission would have rules prohibiting members from outside the UK to be in an online support group. Channel Island residents often belong to UK charities or work with them. Very possibly if there are financial benefits there might be some exclusions, but it seems very harsh to refuse to allow them to talk to other parents.

@x2boys and the group is for that but doesn't mean an admin has to be in same position really , they just monitor group and help out , not always possible to have help from someone who is busy and people take help from whoever can

It does seem like a valuable service she gives though.

People outstaying ultimately becomes the demise of many a group. Ironically it’s normally the people who struggled to join in the first place due to their own (understandable) fears and self consciousness who end up entrenched.

I’ve seen so many fall part because the overstayers group becomes increasing dominant, use it for all sorts and won’t let go and then wonder why no one wants to join and everyone else leaves. They can’t see past that it was successful for them and therefore should remain the same. Fascinating part of human behaviour though.

Maybe talk to her rather than throw her out though? If you don’t like her style it can be easily adjusted. She’s probably completely unaware. Good luck hope all goes well.

@@Constantcrayfish

Probably not but you never know. I agree that they shouldn't be excluded but equally in the context of this thread; the admin in question probably didn't make the rule in the first place. They are not the head person in charge, founder is still very much active and involved. Don't know why the OP couldn't have queried the Charity / Group's position privately.

@Noidlet

@*@Constantcrayfish*

Probably not but you never know. I agree that they shouldn't be excluded but equally in the context of this thread; the admin in question probably didn't make the rule in the first place. They are not the head person in charge, founder is still very much active and involved. Don't know why the OP couldn't have queried the Charity / Group's position privately.

Fairy nuff. I just feel protective of the poor Crown Dependency residents as they are tiny communities really. I know there are home grown DS charities which do sterling work, and parents who are very involved in them, but the numbers of babies with DS born each year must be tiny, so giving their parents every chance to connect with others is so valuable. Still, there are probably quite a few online communities that don't exclude them.

I can tell you from experience that admining groups is a thankless task!
I think this woman is probably doing a lot of work to keep the group within it's own parameters. I don't have any children but I used to work with kids with SEND and occasionally attended playgroups for children with DS/other SN during the school holidays - it gave me the chance to talk to parents (not of my pupils) and both give and receive advice and opinions. It was very helpful. Should I not have been allowed in just because I didn't have a child with DS?

@MagnoliaXYZ

How do you know she hasn't had a child with Down syndrome? Maybe she had a child who had Down syndrome who died?

I was thinking the same thing.