As Pomised a reply had to walk away yesterday
Bloody hell al difficult question, the answer is yes and no, in truth if i answered the question as asked my answers would be different ans understanding and empathy when used together is almost the same although in reality are different,
so i will answer using them as two seperate questions(not being clever but i thought long and hard about it and found there are 2 sets of answers ) ,and will try and answer as a mh sufferer as a parent and as both, so at some time the answer may seem contradictory but it isnt
on MH i can only answer for myself, the main thing to realise is although sometime we may act in unacceptable ways, or may look as miserable as sin, we are alive and in the room.
Dependant on the mood some silly things can make you withdraw, if someone says leave me alone then do it, but keep an eye, for me i dont like people pussy footing around.
Im intelligent enough to realise whats wrong, but im not thick im not stupid i just cant get rid of the feelings. as a support worker you need to be aware that sometimes offering councilling etc may not be the correct move at all, just read your reply so see your heading in the right direction
sorry going too have to come back to this llater fella(sorry had a massive down replying yesterday, so came back to it now)
This latest depression has been in full swing for 6 odd years now, and is showing no signs of packing it's Dam bags, all i need is for people to understand that, when i lock myself away i need left alone.
Personally i do not want people to show empathy to me as that would mean 2 things either they have suffered themselves, but will as you sais just sit and wait and that helps.
You wont like this reply but anyone else who shows empathy i don't want to be near as i know they are in reality lying through their back teeth.
One thing i will say is if you visit someone who seems to be getting steadily worse, have a look at the meds they take as different meds can have various effects on mh from keeping things the same, releaving symptoms, or making people more suicidal.
A big problem for me is the bloody shakes as i rely on my hands for everything , the shakes get me down as it's difficult to get my head around that things i took for granted for work etc , i struggle with, things that used to take 20 mins can now take several days to do.
There is also no love lost betwixt me and some so called proftionals, councilling normally sends me so far up the wall that i normally dont get asked back.
The main problem for me is they all seem to try and put you in a catagory, based on questions that some plank has made up.
It's particularily irksome for me when i ask what experiance they have and replies range from either more than you to i have a degree, but have never suffered first hand(hope that makes sense).
A lot of the theory they do is based on stuff thats older than me
, but luckily modern medicine and imaging will filter down to the training so eventually it should get better.
As a parent of a child with various disabilities, people also need to realise the kids can hear what you say, so if you make a remark and smirk, and the child calls you a lady garden, blame yourself not me.
I will focus on Ann-Marie Irenes epilepsy first, when i first met wendy , Ann-Marie Irene had a fit, so i walked over to her sat with her made sure she was ok ,said to wendy get some clean clothes for her.
Wendy stood almost dumbstruck the worst part for me was.
Wendy explaining that Ann-Marie Irenes dad and some of wendys ex boyfriends would moan or take the water and look the other way.
For Wend it was a massive shock that my initial reaction was to make sure Ann-Marie Irene was not injured and safe till she came out of it, as she had never experianced that type of reaction before.
The hardest part to deal with is snidey comments from supposed full grown adults, my reaction was always one of confrontation, as tbh as an adult they should understand. Kids reactions varied from asking what was wrong to others taking the water, once explained most said ok.
Also caring for a disabled child is in the main a 24/7 job, and siblings can and do get jelous and start acting up, this is difficult to deal with as each kid is different
But as parents we would spend as much time with each kid as possible, there was one rule here that if anyone wanted a chat, then time would be instantly available on a 1 to 1.
We used to ask the others to help in the care of Ann-Marie Irene sometimes they did sometimes they didnt.
One thing i did was treated them all the same this is extrememly important.
A lot of people also need to understand that when someone has a fit they may lose control of their bodily functions, it not embarasing ,it's not discusting, it's what happens when the brain sends the wrong messages for a while.
Also the disabled child need reminding from time to time that there is nothing embarrasing or shamefull abuot what happens to them.
As a dad or mum you will operate outside of the comfort zone of polite society. Men in particular are squemish when it comes to womens issues, but to me it didn't matters as i couldn't decide to only look after the good bits of her health,
Doctors and nurses also need to understand these things, one nurse said on a home visit, how does Ann-Marie Irene feel about me bathing her ,
I replied why dont you ask her, for me this was a kick in the head, did she not think we talked it over with Ann-Marie Irene,
we did and she was confortable with it.
One visit to the doctors was a real eyeopener as to how backwards docs can be, Ann-Marie Irene was the devil incarnate once a month, so i took her too the docs, Ann-Marie Irene had a habit of not bothering speaking at times, i explained the issues, bloody doc said oh mum needs to deal with this.
That made me bloody livid as at the end of the day i was trying to get help for her, Wendy saw the same doctor and gave her a piece of her mind.
One thing i would advise if you know someone with epilepsy , see if they keep a diary , and also film some fits, sounds wrong but will save lots of time in how they are treated.
We are not heroes, we arn't superman or superwoman, we don't need others trying to sympathise with us, People need to understand one thing and that is we are parents just like everyone else, it's just some of our kids need a bit of extra looking after , we are just ordinary parents
Im going to have to leave it there as im starting to crash ,
If you want more info for your question , then arrange to pop around for a chat