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Death and Grieving Coping with loss is difficult at any age, but you are not alone during this difficult time. Reach out to other users in this forum.

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lovechild777 Offline
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Unhappy experiencing severely disabled child - October 28th 2013, 09:01 AM

I am not sure where this is meant to go... so put it here =)

So I've just started volunteering for a children's hospital in my city and have been finding it okay so far. However, tonight I hung out with a child who was severely disabled. It was pretty tough. He was drooling, couldn't speak or barely move.... he could barely hold his own head up. His mother told me a lot about him and what was going on while I listened respectfully. She told me that he was going to die soon. I just found this really hard... I got home tonight and talked with my partner about it and felt more and more upset the more I told him about it. I really just need someone to talk to about it or give me some helpful advice or support.

Thanks in advance guys =)
   
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Re: experiencing severely disabled child - October 28th 2013, 04:59 PM

Hi Mindie,

I worked for six months in a respite centre for disabled children, many of whom had very severe conditions and behaved similarly to the boy you refer to. It is really really hard to deal with, especially if they are not expected to live for much longer.

My best advice is to remind yourself that this is not your fault (or anybody else's for that matter) and that often nature is very cruel and unfair. The boy himself doesn't know any different and, although his death will be difficult for his mother, she will eventually come to terms with it if she hasn't already. She will no doubt be offered some kind of bereavement counselling at some point too.

My other piece of advice is for you to focus on how you being there for her to talk to would have made a world of difference, particularly as you are a volunteer and not being paid to listen. People find it comforting to know that there are others around them that genuinely care, so you should feel pretty good about yourself right now.

It is always difficult to learn that a child is going to die, but as you encounter the situation more it might become a little easier to deal with. If you are struggling, there should be someone within the hospital whose job it is to talk to staff when they have to face something like this. Perhaps it might be a good idea to seek them out.

I am always here if you want to talk. I'm not a trained counsellor, but I do know what it's like to work with sick children.

Take care of yourself, Mindie.

FP x


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Re: experiencing severely disabled child - October 29th 2013, 09:49 AM

Hi,

I agree with what fairy poppins has mostly said, also the other thing you can do is remind yourself that you were lucky to get to know this child and the child's family, and you can tell yourself things like 'just by knowing this child for the time I did has made their life better and has made their families life better'

I have a friend who's brother is severely disabled, he can walk, but cannot talk etc, her brother has taken a liking to me and when I go round hers I talk to her brother etc. Everyone knows that one day my friends brother will die and pass over though my friends brother is nearly 30.

Is there someone at the hospital who you can talk to about this child - perhaps a senior member of staff - they might have some advice for you on how to deal with this sort of situation and such like ?



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Re: experiencing severely disabled child - October 30th 2013, 11:37 PM

Hi,

I am really sorry to hear about this. The death of anyone is very difficult to deal with.
I agree with what has been said previously about reaching out to people at the hospital for support and keep reminding yourself that his family is most likely or most likely is getting or will be getting support for this.
I really hope this reply is helpful to you and that you can get support.
If you would ever like to talk, you can send me a PM and I will be glad to listen and help if I can.

Also, I moved this thread because although it is about a child with a disability, it is mainly about grieving. If you have any questions about this, you can send me a PM.


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Re: experiencing severely disabled child - October 31st 2013, 01:02 AM

Hey there, I'm really sorry to hear about this. I have never had the experience of working with disabled children/adults on a regular basis, however I did have a best friend who's brother was severely disabled and actually passed away recently. It's tough to see someone in a position in which we can't help. It's in our nature to want to help others, and when we don't get the opportunity, we usually place blame on ourselves, and somehow make ourselves believe that we caused the situation. Of course, none of which is true.

What you are doing with your spare time is amazing. You are truly a caring person, and don't forget that. If you feel as if this situation is extremely effecting you, I'd urge you to contact someone to talk too. I'd recommend a professional, and as FairyPoppins said, there should be someone at the hospital/care center you can talk too. If not, try to find someone else who has some experience in this environment to talk/vent too. The goal of talking about things is that they can possibly help you fully process the situation, and give you valid advice/tips to better help you through this rough time.

Keep up the good work with volunteering! I wish there was more people like you around! If you ever need to talk, feel free to PM me.


Best wishes,
Chris


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Re: experiencing severely disabled child - November 4th 2013, 12:41 AM

Thank you for all your kind replies everyone, it really has helped me. What you said, Fairy Poppins, about the child not knowing any different has really really helped me come to terms with this experience. I feel okay about it now. Thank you so much =) <3 <3 xxx
   
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