CHOICES: #7 - Acceptance & Functionality

Don:

I apologize for my late response. This has been a week from you know where. My Crohn's disease kicked up.

Is it possible that you spoke at a NAMI Family to Family class? I've spoken to Family to Family classes and taken the course as well. It's a great program. Like you, I've enjoyed talking to the class and, and as you said, they are accepting and eager to learn. They all care deeply for their consumer.

NAMI has another program called "In Our Own Voice." It is a program where NAMI trains consumers like you and I to go out and talk to anyone and everyone [general public, college students, churches, police, hospital workers, screening centers, and on and on] about their experience with mental illness. The audiences have always been accepting, encouraging and very eager to learn from someone who has "been there." The presentation by the consumers [there are always two consumers at every presentation] uses a video tape to guide the discussion, but what the two consumers making the presentation say about their own experience is what people really want to hear. They know they need to know, and they know that only someone that's had the experience can tell them what it is really like to live with mental illness. The presentations are terrific stigma busters. You should check it out with your local NAMI. I think you would love it. If you can't find the nearest NAMI, look it up on http://www.nami.org/. If you can't find it there, let me know and I'll get it somehow. I really do think you would love the program.

It sounds like your family was a real advocate on your behalf. Mine was too. And they made a big difference in how it is all turning out for me.

I could not agree with you more about the education of consumers, family members, screeners and even providers!!!!! It's extremely important and not being done. The NAMI In Our Own Voice program tries very hard to do as much education as possible with their presentations, and they talk to everybody and anybody, but I agree with you that it should be part an integral part of the treatment system. I'm working right now on just this issue here in New Jersey and would very much like to get more of thoughts on the issue. Would you e-mail me a RobinCunningham1@gmail.com? It would help me a great deal.

Take a look at Choices #8 which I'll be filing today. It's my story, but I think you'll recognize some of it from your own experience.

Pax [Latin for Peace],

Robin

M. V. Kuikami:

First, I want to apologize for being so late in responding to your comment.  I have been ill, but am now feeling better again.

It is very hard to watch you child struggling with mental illness, but not realizing what is wrong and refusing treatment.

I did that very thing when I first became ill and so did my daughter.  You want so much to help them, but they won't listen.  If you try to share your experience or give advise they say your preaching, and that builds a wall between you and you child, making things even harder.  They tune you out.

With my daughter, I did what my psychiatrist did to me.  He never tried to convince me that I was ill, but as we continued to talk, I came to realize that I was.

It's a little harder to deal with this when it is your child.  With our daughter, I never argued with her about it because I realized that doing so only made matters worse.  So, I developed my "Top 10 List."  It was a list of the ten things I most wanted to ralk to her about.  And then I struggled very hard NOT to ever bring up any of the ten things up in my conversations with her.  We just talked like parents and children do, about things she was interested in.

Then every so often SHE would bring up one of the things on my list.  I then would make a simple comment about it, just a sentence or two and stop.  This way she never felt I was preaching to her.

Then sooner or later, usually in a week or two, she say - "Dad, do you remember when I ask you about (one of the things on my list) and you said_________.  What did you mean by that?"

This time I'd add another comment or two, a little more than the first time, and stop.  Then two or three weeks later she'd bring it up again.

In the end, we talked about everything on my list.  I got to tell her what I thought she need to know, but it was always at her request.  I still have a top ten list, but none of the items on my original list are there; they all been discussed.

Although this approach took a long time and required a great deal of restraint and patience on my part, I'm happy to say my daughter has sucessfully dealt with many of the issues she faced becuase of her illness, including taking her medicine faithfully.  I got the opportunity to give her the benefit of my experience, my advice, and we became and have remained very good friends.  We talk every day. 

It was very hard to do, but this approach worked.

I would also like to recommend a book for you to read. it's title is  "I'm not sick.  I don't need help" by Xaviar Amador.  I'm certain you can find it on Amazon.com, but if you can't find it let me know and I will get a copy for you.

You can e-mail me at robincunningham1@gmail.com.

Please continue to make comments as the Choices Series of Blogs continues.

All the best,

Robin

Michelle:

Welcome to SchizophreniaConnection!  We're glad you have joined us.

I've had schizophrenia for 50 years.  It has run in my family for several generations.  Although she does not have schizophrenia, our daughter is also ill.  My point is that I've seen the beast from all sides.

Is you son taking medications?  I personally believe that this very important.  I would never have gotten into recovery and through college without meds.  It is a terrible experience to see your child suffer when you know that medications would help him or her.  How do we as parents induce our children to take drugs that will help them but have bad side effects?  Look at my comment above about my top ten list.

If he wants to go to school but your not sure he will suceed, it puts you on the razors edge.  Do you or don't you help him?

This happened with our daughter.  We ended up sending her to NYU and she graduated cum laude.  I very glad we made the decision to give her this chance and I'm very proud of her because I know it was not easy for her.

One alternative might be to make a deal with your son that as long as he takes his meds you will let him go to college.  It might work.  But you'll never know if he is keeping up his end of the bargain or flushing his pills down the toilet.  I also don't like the idea because it is out and out coercion and that makes me uncomfortable.

If you get the impression that I'm waffling,

then your right.  This is a decision that no one can make for you.  You must make it yourself.  If you can talk to his doctor about it, do so.  But in any event be sure to consider all the options and the possible long term consequences for your son.

I wish you and your son the very best.  Tell us what you decide and how it works out.

Robin