Tag Archives: awareness

Round Two of the Battle for Services

home-page-slide-1We are repeatedly told that we need to do more.

So we are doing more.  We have added intensive in home therapy, individual therapy, and have ongoing mentor support (staff).  We also are visiting doctors and psychiatrists.

I spend my days either on the road to the cities, or at home chasing down this report or that report.  The reports are the WISC, BASC and what not.  It seems like it takes four or five calls to track down who has the report.  Then it takes four or five calls to get them to release the records.

Of course, everyone needs a release signed, though we sign them in the Spring of the year.  So I travel in the other direction in order to get those releases signed.

Last week, a call was made to the in state facility.  This generated a review of the decision to deny placement of David at the facility nearest our home.  This review happens on August 5th.

A piece of the review plan involves letters from the primary psychiatrist, psychologist and the therapist.  We were able to get letters from the last two professionals, but so far not the first.  It seems that the psychiatrist is holding out for more information from the facility we are trying to get him into.

David hasn’t been in the facility for 18 months.  So not sure what the psychiatrist is looking for.  They are demanding progress notes, therapy notes, behavior reports, test results, everything detailing David’s stay there.

Why?

In May of this year, when David was in the mental health unit at the hospital, his primary psychiatrist told us that he needed long term placement in a psychiatric residential treatment facility.  She said then that she would write a letter for us to help get him a placement.

So why now is the letter being held hostage for documentation that doesn’t directly impact placement options at the present time?

I appreciate that the psychiatrist is busy.  I also appreciate that sometimes things get lost in the traffic of running a practice.  This is of little consolation to my family, and David.

Is the psychiatrist upset with the facility for not responding to their repeated records requests?  Or is the psychiatrist upset with me because I document their foibles on my blog?

I have always said that if the people involved in David’s care complete their job as they are supposed to do in a professional manner, then I will praise them in writing.

I can see now why the psychiatrist recommended that we give up custody to get David the care that he needs.  To me it is still not an option worthy of consideration.

After we get acceptance or denial at a facility, we then have to go back to Ascend Management Innovations for approval.  In the meantime, our family is at risk.  Ultimately, this process, this travesty that is the mental health care system is just grossly inadequate.  It is tragic that this is what passes for care for those with mental illness.

Mental Health Awareness

We need to continue to raise awareness regarding mental health.  Focus on mental health shouldn’t revolve around those with real or perceived mental illness committing violent crimes.  Instead, it should be brought to the American conscious much like AIDS or Cancer.

Mental Health encompasses so much more than one illness.  It includes ADHD, schizophrenia, Autism, Bipolar, and so many other axis of diagnosis.  Much like an MD, doctors can specialize in one area of mental health.

To raise awareness, people need to use their voices.  Parents and patients alike need to voice their stories.

Raising awareness begins with one voice in a forest.  Who will be that voice?  You?  Me?  Our children?

In my mind, the answer is all of us.  We all need to be that voice in the forest,  because the forest is a vast wilderness of people who don’t understand what the mentally ill or the people who care for them are dealing with.  In order to advocate for change in the mental healthcare system, we need to ensure that people are aware of what is needed.

This past Friday I had the fantastic opportunity to speak to a group of professionals about the culture of care in my state regarding mental health.  I spoke about David.  About adoption, behaviors, fear, and asking for help.  I also spoke about the failures in getting him help.  About the frustrations that I feel as a parent in trying to get him the services and help that he needs.  The culture surrounding mental health needs to change.

keep-talking-about-mental-health

Don’t think that you have a voice?

I bet that you do.

Your voice exists every time that you talk about mental illness.

Your voice exists when you tell a doctor or therapist what you or your child need.

Your voice exists when you share the behaviors of your loved one.

Use your voice.

Don’t know how?  I can help.  If I can’t help, I can recommend people in your area that can help you.

Need a voice?  Contact me, I would be more than happy to speak to your group.

 

calm before a very chaotic storm

14162165177_a14786b64c_cEarlier, I wrote to you about David’s explosion of behavior. I looked just now, and that post never published.  I evidently saved it as a draft.  So it will seem like these events are coming back to back, in reality, it has been a couple of hours.

We had about 2 hours of calm.  And then.  One would think that Mt. Etna erupted.

By the time things calmed, David was restrained multiple times.  He became combative.

I should really say that it all started with a grin.  That grin that says hell is coming.  His grin.  The one I should know so well, that means he is about to come unglued.  Sadly, I missed the sign that was staring me in the face.

So tonight I am the worst father, my wife is the worst mother, we are the worst family.  He said “he wants a new family”.

My wife and I replied, “this is the only family there is.”  At which point, all hell broke loose.

I am at a loss,  I guess as a parent we want what is best for our children.  For two months I have been in denial about the situation.  The honeymood is officially over.

As I write this, I am getting myself back under control.  See, I have a heart condition.  It is stable, but no one likes to be unnecessarily excited when they have a heart condition.  Mom is getting herself under control, I have two boys hidden away in their rooms, and now I have a babysitter that won’t babysit in April so I can spend two days in meetings down in the city.  Sure I could drug David into a comatose state, but I am not that guy.

In reality.  I love him, I really do.  Maybe we need to love him from afar.  Maybe that is what he needs.

He says “if I wasn’t David, then I wouldn’t be like this.”

I am not sure what that means.  What I do know, is that when he gets angry, it is almost more than I can control.  Soon, it will be more than I can control.  I thought for sure one of the neighbors, or the boys was calling the Sheriff.  If not them, then surely a neighbor.

So what do we do?

I understand a lot of things about David’s mental illness.  I wish I could figure out the magic to help him control the demon that rages inside of him.

I wish that I could get him to see how much he means to us.

In a way, I guess that this blog is a journal as much for me to document my thoughts as it is for David to some day look back and say to himself, “they really did try everything.”

Reality tells me that  I will be waiting a long time past forever for that to happen.

It started because I called him out about his lie regarding wearing shorts to school when he left the house in blue jeans.  Such an innocuous thing.  Sure I could have let it go… but if you let one thing go, then you have to let another, and another, and another.  Pretty soon mice have taken over the house.

Trust.  Something David so desperately wants.  Something he throws away like lint in his pocket.

A part of it is the bipolar.  A part of it is the Autism.  A part of it is the attachment disorder.  A part of it is the borderline personality disorder.  A part of it is… ah, but you get the picture.

Please, a prayer for David.  That he finds the peace he so very desperately needs.