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Hi! I am also a parent of a child with special needs...although she is almost not a child anymore. A while back I was really struck by a conversation I had with a friend. Her child had developmental difficulties. My child has mental health issues. I thought we would have very little common ground but I was surprised to realize that while the day to day issues of how to include our children in life and church were very different, the pain and disappointment of our experiences was very similar. I think this discussion is a great idea, and keeping it open to learn from each other, with all our differences is great too.

I realize I am responding to my own post, but am doing so in the hopes of hearing from more people. I am doing this study with one other person at the moment in order to familiarize myself with it, and yet "feel safe" to share. Is anyone doing this in a group of more than 2? Did you make it an open group, or did you pick out your attendees in advance? I think the questions in the study are well worded, but I have a lot of fear of opening a can of worms and having things get negative and out of control. But maybe this is an unbased fear? I'd love to know if anyone else who downloaded this study has dared to do it, or not, and why and how. Thanks.

Thank you both for your replies. It seems to me that while there is a willingness to adjust in order to meet the needs of specific individuals, there is still a large pressure from the institution to maintain the status quo. I sense fear of change, fear of losing the meaning or truth behind the profession. It is almost a bit of an initiation and if you can't do it, well, then you don't cut it, you must not be really serious about your faith. There is a feeling that you have to make it a bit of an event in order to make sure it is not "too easy" and to weed out the people who aren't really serious about their commitment. The problem of course is that if you have social anxiety, advocating for yourself and explaining your needs even to a smaller group of just elders, could be really trying. And so those people tend to remain hidden in the woodwork, unless someone really searches them out and figures out what is going on, and helps them to navigate the situation through advocacy. And how rare is that? In the 5 years I've been in my present church, I know of one person that was helped around and through the rules. But how many more are there?  

Hello Ken and Randy: Thanks for the discussion. I was really moved by your initial message Randy. Our family lives with mental illness and I am deeply frustrated with exactly what you describe: the absurdity of allowing someone who is really sick to choose wellness, when they don't even know what that is. My daughter lived on the streets for several weeks last year and because she was 16 and "old enough", and despite her long history of mental illness, there was nothing I could do to stop it or get her help. Believe me, I tried. On the other hand, this event occured after 2 years of mental health care where she spent 6 months of each year in the children's psyche unit both in our local hospital and in a larger center. Where was the healing that was supposed to occur? You can read stories of people who do get "care" and invariably there are periods of time where they are over-medicated and time is lost. The whole system is so messed up, as a parent/advocate I hardly know where to put my 2 cents in to advocate for change.

I do think you are absolutely dead on when you say that people who care about the person who has mh issues need to be allowed to be in the picture and have their say. It is ridiculous that there is so little support or guidance available for those whose lives have been disrupted by a loved one with mental illness.

I was so excited about your post I passed it along to a mh worker we have seen over the last 4 years. Do you think that advocating for this with a letter to a mp would be something you could do? I know that it bears little fruit, but I don't know where else to begin. It is a justice issue, would it be appropriate to have someone like CPJ advocate in this matter? I am making wild guesses. What do you think?

I am very interested in Temple Grandin's story. It is very inspirational. I am jealous of the people who invested in her, and wish the same experience for my daughter, who suffers from bipolar disorder. I think mental illness is the new misunderstood and feared illness. But I suppose anyone who loves someone who is suffering and seems "stuck" would probably feel the same way, whatever the diagnosis.

Hi Brenda: I realize I am a month late in this discussion, but seeing as no one else has picked it up, I thought I would. I really resonated with your question about the usefulness of hospitalizations. People seem to assume that if someone asks for help, or is forced into it, that they will actually receive it and come out further ahead. That is so not the case. We have extensive experience with hospitalizations for our mentally ill daughter and most of the hospitalizations did little more than keep her physically safe while she was there. There was lots of bad things that happened, as well. However, I will say that when she was transferred to a larger center and then treated there we did finally start to see some improvement. I think the problem is that really, medication seems to be largely a guessing game, and therapy, especially in hospital settings, is very cut off from daily life, and therefore of little use. Now, I wouldn't say that she shouldn't have gone to those hospitalizations because one other benefit of them was that our family had a chance to pull together and recuperate from the damage done in our home. But I so long for more research and understanding into mental illness, and drugs, as well as further training with "professionals" who seems to really lack an understanding of the value of family in supporting a mentally ill family member. Those are my thoughts. Have a good day.

Nelly Sinclair on March 14, 2011

In reply to by anonymous_stub (not verified)

Hi Ken: I really hear you. I struggle sometimes with sharing my perspective of our family's story because my daughter is intelligent, and at times does see very straight and knows the pain and feels tremendous guilt for our and her situation. Mental health issues carry with them so much judgement, and so many people mistake behaviours as plain evil and don't understand the illness and its relation to the behaviours that come out. Every time I write here, or anywhere, I think of her and wonder if she saw what I wrote, and she very well may, am I being fair to her, even as I express my own pain and journey? And yet, I know that my story counts too, and so I try to speak anyways, always with respect. Hope that makes sense.

I am not 100% sure, but I do believe NAMI is strictly in the US and that we haven't really got a Canadian equivalent. Anyone else know?

Hello all: I checked out both links, they are now both working. Anyways, I understand the wisdom and the message behind the point of using people first descriptions. My only problem is that sometimes I get so worried about being politically correct, or even just not embarrassing myself that I would choose to not speak at all, rather than "say it wrong". I think it is more important to speak about these very important issues, than to avoid them for fear of saying the wrong thing. So I don't like to emphasize this too much. Or is this a bad attitude?

That is a great quote: Be kind, for everyone you meet is fighting a great battle. I don't think I would have understood the depth of the truth of that statement when I was younger, but as life goes on, well, it's obvious.

I have a daughter with many, many health issues, and she will often question me, why her? Why does she belong to an age group that seems so unscathed by illness, and yet be drowning in it herself? I don't always know what to tell her, but I will say things like, "life isn't fair" or " their turn will come" or " everyone gets something" or," you know what your pain is, they have yet to find it". These are hard things to talk with a teenager about.

By the way, what is ADA? And can someone tell me a bit about the A2A covenant?


This is a strange comment. Of course it matters, because truth matters. Secondly, by definition, victims are hurt by the actions of others, so of course they would care. We don't need to add to people's pain by our own lack of understanding. Taking the time to understand people's precise situation is the motivation behind "labelling". Understanding that we are all damaged people is a good perspective from which to start.

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