"He looks fine, I'm sure there's nothing wrong with him..." Arrgh!

[Pollaidh]

Hello
Can anyone suggest ways to deal with people who say this (other than punching them)?
I don't mind 'he looks so well, it's hard to believe he's so poorly' (true as he's a bouncy little chap), but comments like 'Oh I'm sure there's nothing wrong, he looks so well.' etc are driving me crazy.

He's 8 months old and has been in hospital 7 times since birth with respiratory distress, he's been on CPAP, and had a pneumothorax. Every time he has a cold he needs help/O2 etc, he's not allowed into nursery/mixing with other children and there are now concerns he has possibly related hearing/speech issues. He's being investigated for Primary Ciliary Dyskinesia, tracheomalacia and some other issues. He looks so well - fat cheeky, happy etc, and I'm getting sick of these insensitive comments. The last person was my HR manager who we bumped into!

Thanks and do feel free to tell me off if I'm being over-sensitive.

You could retort back with 'you don't look like an ignorant bastard but then looks can be deceiving'.

Not a lot you can do really. It is frustrating. Maybe say something like 'yes i love it when he looks so well like he is today as he's so poorly a lot of the time'.

I think it's difficult for people to grasp illness and disability unless they can see that the person is unwell or disabled.

I feel your pain - I had this recently at a park when a person who I hadn't seen said in a while said "my son looked absolutely fine". I was gobsmacked I had just told her my ds has asd and a severe learning disability. The thing is he was sitting on a swing and did look like there was not a thing wrong with him. He's at special school and will be until he's nineteen, his communication is at 12 months or below, he self harms - the list goes on. He will never live an independent life but he looks fine so all must be well with him. I find the comments quite hurtful and I think to myself to these people think I'm exaggerating my son's condition. Had she seen him out the swing his problems would've have been more apparent has no doubt he would have been jumping, babbling and stimming or just staring into space. I do think people mean well but I would much prefer that people take the time to ask about my son's condition rather than trying to sweep his issues under the carpet. I have wondered now for some time if in general people are more sympathetic if you have a child with a visible disability. I wish your lo all the best x

I don't know - but a lot of people are still ignorant in that they stare at visible disabilities. I remember the mum of a child with Downs Syndrome saying she wished he looked normal, so they could go somewhere without people staring at him!

We often get glares/questioning glances from people, when we use lifts on a busy day with our daughter; or get out of the car in a disabled space! She looks normal, but has severe epilepsy - she can fall due to a seizure without warning at any time, and regularly gets head injuries (even with head protection). She wishes she did not have to wear head protection, as even though it is the most discreet hat we could find on the internet, people still stare at her all the time! It really upsets her and causes no end of tears. I suspect she would give her right arm, to be able to walk down the street, without people staring at her hat!

My guess is that its a case of the grass is always greener.....

I have wondered now for some time if in general people are more sympathetic if you have a child with a visible disability.

So true. If they are in a wheelchair nobody would dare question if there is a disability but if they look 'normal' then people play it down.
MIL used to play down DS's ASD until she had to look after him while i was in hospital. I never heard the words 'xx does that as well and isn't autistic' ever again after that

I usually get awww he looks so normal grrrrrrr.
My reply is I know asd kids are usually purple with green spots,we must have just got lucky .
However he spent a few months in a wheelchair a few years ago (bad broken leg) and people didn't say any stupid comments and were ready to offer help ect ect.
(He was still stimming,shouty ect but still people didn't comment like they would if he was running around)

I don't get comments on what DS looks like but I often get 'he looks such a happy little boy in the photos you post'. Maybe, I should post the kicking and screaming meltdowns - I'm sure DS is very happy being non-verbal at 4 and still in nappies and that we've had to fight until it almost broke us just to get him a suitable school placement.

nah tempting but probably not a good idea with HR

Thanks everyone, I am glad I'm not the only one. I also have some more obvious physical problems myself, such as being on crutches over a year, and there's a little more consideration but a large number of people still knock me over, run at me or just stare.

I find heavy sarcasm quite satisfying.

oh my GOD! you mean all the doctors are wrong? You mean that all this time, when he has been the specialist was imagining it? All those invasive tests he had returned false information? This is AMAZING! Thank God you have come along. We can stop all the because he looks ok. Saints be praised. It's a miracle. Hallelujah. Thank you. Thank you SO much. Thank you.

Hecate I love that. Unfortunately I don't quite see myself using it to my HR manager! And most people mean well, I keep trying to remind myself...

First line of DS' statement before appeal:

'DS is a happy child with an engaging smile'

wtf?

I've come to the conclusion that people just can't understand complex or unusual situations.

I get next to no understanding for my two kids with Tourette's syndrome, even from people with a medical background. Some people have been outstandingly rude in their ignorant comments. But my early osteoarthritis in my knees gets a lot of sympathy - because people can understand and relate to it.

I keep in my head the line from 'Madagascar' - 'Smile and wave'

DS2 uses a wheelchair and we get people following us round the shops asking questions about why he is in it. So DS2 gets so fed up he gets out but he can only walk a little way before he gets tired or sensory overload and has a massive tantrum. Then we get tutting from people who think that children who use wheelchairs should be all cute and cheerful all the time like on children in need.

DS4 has a mild visible disability and a severe invisible disability. People make a bigger deal of the mild thing because they can see it, it's really weird.

Just punch them! There is no alternative (disclaimer, I haven't actually done this)

I also find that any medical professional we meets him (even if it's an appointment for me and they know nothing about asd) tests him for it. (I.e. Eye contact etc) they wouldn't fucking ask him to try and walk if he was in a wheel chair!

I had a Consultant Paediatrician question my DS's diagnosis of Tourettes and asked who diagnosed it and what his tics were.

This despite the fact DS is on prescribed meds for Tourettes

The Dietician beside him, who was actually bothering to looking at my son, said ' He's ticcing right now'.