Misunderstood Symptomatology

Over the years, one of the more difficult aspects of dealing with my son’s mental illness was that I was always getting information that was not valuable to me in the least.  It is a hard road when you are going to the “experts” and they have no idea what you are talking about.  They keep giving you the same information, over and over, insisting that at some point, “It will work.”  Frustrating, right?

For a long time, I felt extremely alone.  I know that one or two of the therapists we saw just thought I was crazy.  Others, I’m sure, pitied me.  The flip side of that was that I spent a period of time where I was very angry, and I blamed them for not being skilled to help us, as well as being unwilling to LISTEN.

Now, however, over the past two years, I hold no more anger and I don’t blame anyone.  The reality is, THEY don’t understand.  I have so much more faith and confidence in my ability based on what I have done so far that I am able to always be very direct with therapists and say, “No, that’s NOT going to work.”  I only collaborate with those willing to accept that answer.  Otherwise, on we go.  Truthfully, in the last two years I have met many more who are willing to help and listen rather than argue.  (Though I attribute this phenomenon to my son’s formal diagnosis more than anything).

One issue we still deal with is the favorite of the behaviorists; Rewards.  It is well known that the positive reinforcement path with rewards is popular, and dare I say, well liked.  Not for nothing, it would be a very pleasant experience if your child could comply, earn points, and then a reward.  For those it works for, I say, “Awesome!”  From very young, say age four, this was not a concept that could be gotten in our house.  I tried every reward system and point sheet, chart and “store of prizes” available, over and over, many times.  They have never worked.  Now, the science is catching up to what I have known for many years, there is a reason why it doesn’t for two of my four children.

This article talks about functional impairment that exists within schizophrenic patients as a causation for why “reward” systems don’t work. Thank you, researchers!  You’ve just made it easier for a whole new generation of parents with mentally ill children.



P.S. (Aside on anger)

One instance that illustrates my anger is the nearly year long visits to one of my son’s therapists.  We thought, since he was well thought of and collaborated with a very well known psychiatrist that we might be in a good position. My son was 10, and he was routinely pulling knives out of drawers and saying he wanted to kill himself on a regular basis.  He also was pretty violent in the home (breaking things, tearing up his room, throwing things at us, etc.)  Well, after a long time with no progress, I finally put my foot down and wanted to know what exactly was happening in the sessions. Guess what?  The therapist wouldn’t tell me.  Oh, he gave me little bits about what they were working on, etc., but I could never get any real answer about what my son was saying/thinking, etc.  Finally, I was at the end of my rope, doing therapeutic holds in the home regularly and dealing with screaming meltdowns, suicidal talk, etc. so I told the therapist I wanted an answer to what he thought we should do as things were not improving.  His answer floored me then, and still does.  I was told to, “Place him in a residential facility.”  Period. End of story.  I could not get any explanation from the psychologist as to his reasoning, and he was unwilling to disclose what might have been said in session to prompt him to say it.  So, we left and found someone else as I was unwilling to place my 10 year old son in a residential facility based on the opinion of a psychologist who couldn’t even explain to me “why” he thought he should be there.


Putting It All Out There

One of the things I admire is the willingness of some people to put themselves ALL out there.  Especially when it helps others.  We are all subject to scrutiny and judgement, but those who deal with illnesses/disorders/abuse of any type who place their stories out there for all the world to see, just in the hope of helping one person, have my deep respect.

The world of mental illness is a lonely one, particularly for those who suffer from it, but also for the families.  It is difficult to get people to understand.  It is disappointing when we here criticism of how we should have/could have done things differently and/or better.  The criticisms come full and hard and fast at times.  “If you didn’t let your child,”  “If you had given them this medication,” “If you didn’t give them this medication,” the list goes on and on.  But, I think, we torture ourselves the most.  I don’t think I know one parent of a child with a mental illness who hasn’t beat themselves up and down.  We question, we listen, we try all the time to figure out just what is going on.

This brings me to bravery.  So many parents of children with mental illnesses are brave, very sacrificing, and extremely generous.  They put their lives on hold, speak out, speak up, get the best they can for their children.  They also support, listen to and encourage other families.  But, that said, it is nothing compared with the bravery I see in the children.  For a child with schizophrenia, life is a terrifying world full of bombarding images, senses and information.  Some of it they can trust, some they cannot.  They move forward, even though so many things are trying to hold them back.

One set of images captured my attention the other day. John William Keedy, a photographer, put out a mental illness picture series unlike any I have seen.  Here you can see his work, and a little snippet of why he put it out there.  He is just one, doing something he can do, to help others.