To think that some posters have literally no idea what life is like for those with a family member who has disabilities?...

[Perspective21]

Just to say thanks to all those posters who have responded generously, kindly and empathetically to recent bunfights on here. To those who have bandied about ridiculous advice, ill informed opinions on the financial payments our family members are recognised to need (by an official, independent body) and generally upsetting nonsense, I direct you to the This Is My Child MN campaign. Thank you all

I read that thread but didn't comment. I have nothing but admiration for those families coping with disabled members, and often in very difficult financial circumstances.

I have no direct experience, and would not seek to make judgments or assumptions, as I have seen other posters on the other threads doing.

The problem is so many people don't stop to think before they post. In some situations "if you can't say anything nice don't say anything at all" really should come into play.

Although without first hand experience you can never know what life is like for those with disabilites or their families, and even then you only have your own experiences which will differ vastly from on person to another you can still be sympathetic and realise that circumstances out of their control make life different/more difficult and provide support or whatever else is needed.

Definitely there are huge variants; my son has a LD which has left him with some motor delays, cognitive impairments and not much speech (yet), however, even within his condition, Downs Syndrome, every child and indeed adult, has different experiences, different challenges. I don't know what living with many other disabilities is like but I wouldn't wade on a thread and berate people for a poor attitude or being quick to judge them for their motability car ( or whatever).

I'm preaching to the converted here as you have all been very kind but unless you've had to go through the process of applying for Disability Living Allowance, or securing a Statement of SEN for a child, then you need to be very careful about telling people how lucky they are to have such things.

I do not have experience of being a parent with a disability or being a partner to someone with disabilities but I try to understand how it might feel, or wonder as a society, what do we need to do to help.

There's been this attitude lately that "the disabled" aren't us, but they very much are.

Thanks for listening and sharing

I have no idea what it is like - but I imagine it is incredibly difficult at times. Mn does educate and inform me sometimes

Some people on here can't do empathy, and that person they should be ashamed of their attitude.

Walk a mile and all that....
Respect costs nothing.

Perspective there is a lot of common ground that carers and people with disabilities share, I agree.

You wouldn't come on to a thread and berate people because you are more respectful and a nicer person, unfortunately some people aren't like that!

I have a DD with learning disabilities, similar to your DS but she has no syndrome etc.

I am rapidly learning that people ignore her SENs and hide behind the 'oh but she's beautiful, she will be ok' comments, or pass their ignorance off as accepting her as she is - but actually they don't acknowledge her problems.

So many people are afraid of things they don't understand. Sadly, they won't take the time to educate themselves either so remain ignorant.

I am also rapidly learning how lonely and isolating being a parent-carer can be.

I have 2 associates who have children with life limiting illness. I know a little bit of what they go through and it breaks my heart, I witnessed others being completely dismissive and blasé about their situations and I was gobsmacked.

Although this may be, in part, due to their amazing parents and how brilliantly they and their children deal with the situation. I guess when you see them smiling and joking you could forget how much pain they are all in and just how hard their daily routine is. I never forget and I have nothing but admiration and empathy for them.

I never fail to be shocked at how awful some posts on here can be. How up empathetic and cruel.

But at the same time I'm heartened at the increasing number of other posters who even if they don't know what it's like try to understand, or even if they can't are supportive. to all who have bothered! it's heartening to see those bad posts challenged. Silence can make someone in a bad place feel that you agree and challenging means so much.

So OP YADNBU.

up empathetic unempathetic

Bloody autocorrect

What a lovely thread this has turned out to be....
This is just how society should be, the most vulnerable treated well and respectfully by others. I'm so relieved to have witnessed so many kind posters supporting us all in this thread and others...it gives me hope for my son's future.

I was particularly upset by the suggestion that a person could somehow "play up" a child's SEN to get higher up a school waiting list!! Believe me, even when your child has complex and lifelong disabilities, a Statement of SEN is not an easy thing to come by....it has taken months of stress...

I'm pleased MN is also full of lovely, reasonable people too

Don't forget the four years fighting for a statement

I completely agree about the strain it can put on a marriage having dc/dcs with disabilities.

Dh and I only seem to talk about dcs and it almost seems like we are nurses doing a shift handover when he gets in from work and I have to go through what has happened that day/medications/problems/levels etc. It completely changes the whole relationship and some days I think we are only still together because we both know it takes two of us to care for dcs.

Yes Hedgehog I completely feel the same. Anytime DH and I are alone I endlessly ask if we are going to be ok and endlessly apologise for the fuck up of a married life we have as DS2s autism has deeply affected DS1 too. Our family dynamic is ALWAYS stressy . Of course DH always tells me its not my fault but even after 10 years I still feel, well I made him.

I do know what it is like to have disabled children in that DD was diagnosed with MS at 26 and DS2 was diagnosed with Asperger's Syndrome at 12.
I took early retirement (older parent) because of the stress of having DS2 at school and trying to hold down a teaching job. However I mentioned this on a thread once and was slated by a lot of parents with disabled children because they said I had the 'luxury' of being able to retire, even though it meant a drastic drop in our income, as I had been the main breadwinner.
So many parents are living near the edge because of their child's disability and to be honest I have no idea what it must be like to have a child who is tube fed, or like a child I met once still in nappies at 10 and with no speech or independent movement. She still had to be bathed, changed and fed like a baby. It made me realise that whilst my situation was hard, some people have a much harder situation than I do.
So what I am saying here is that even though my children do have disabilities I too could say I have no idea what it is like for parents with children with more severe disabilities.

Whilst I know it isn't the job of parents who have children with a disability to educate others, I too feel that I am significantly more informed of the issues since being a member of MN and that can only be a good thing. to all.