new opportunities?

So I was in Denver this week doing a Title V Block Grant review for the Department of Human Services Region VIII.  It was an incredible experience.  I learned so much about what the state level has to go through in order to get funding from the federal government.

In the process, I shared a bit about myself and my efforts to develop a non-profit organization for Father's of Special Needs Kids. A lot of interest from the state.  In that they are going to be doing some leadership training for fathers in the next year.  So we traded contact information.  Whether or not it will open a door or not, I don't know.

While it is nice to have a break from the normal routine, I sure can't wait to get back to the family.  Going to stop and see Marc tomorrow.  Liz passed her driving test yesterday.  School starts next week.  We won't have a child at the elementary school until January or so. 

It will be nice to not have to deal with the crap and what not from the administration at the elementary.  Wonder what is going to happen with the abuse and neglect complaint.  Time will tell.  more later.

it's been a while...

It has been over a month since I posted an update.  So much has happened.

Marc continues to do well in his placement.  There have been a few incidents of violence, but nothing so major that law enforcement had to get involved.  Started with family therapy sessions as well. 

The big thing that happened is that I spent 6 days in the hospital. I had been sick off and on since Christmas 2010. First I had the heart event, then I had the TIA's.  well after the Fourth of July, I was feeling really run down.  My wife took me to the hospital for a check up.  During the drive down, my chest lit up with a pain I can't describe.  It went down my left arm and ended in my fingers.  I never again want to feel that kind of pain.  What was it?  No idea.  Seriously.  According to all of the tests, I did not have a heart attack. 

Yet something was wrong.  While I was in the hospital they would frequently wake me up and give me nitro-glycerin and morphene.  I couldn't walk without assistance.  I was shaky, alternating between very hot and cold.  I was miserable.

They performed a number of tests, as they thought that maybe I had experienced another stroke.  No, the MRI showed normal.  They did a CAT scan of my chest.  Output is 30% of normal through the left ventricle.  More tests.  They did a stress test, during which my blood pressure dropped to 80/62.  They did an ultrasound of the heart, and determined that my left ventricle is enlarged. 

During the six days, I had three different doctors, and two nurse practitioners.  Most were honest enough to say "we have no idea what is wrong with you." 

One doctor, who my wife affectionately nicknamed Dr Moron went so far as to order a psychiatrict consult because it was "all in my head."   At one point, he was ready to discharge me.  The nurse practitioner, my wife and the nurse on the floor all disagreed with that.  Then he said that "it must be a problem with your colon."

In the end, my wife flat out refused to take me home until we were allowed to see my reumotologist, who treats my Lupus.  Bright and early the next day, when she doesn't normally see patients I was wheeled into her office.  We tested to see if it was the Lupus.  No, the Lupus isn't active.  She reviewed the chart, asked me a lot of questions and then diagnosed me with Fibromyalgia.  Plus I have an enlarged left ventricle in my heart, and weak adrenal glands due to long term prednisone use.

In the end, I am something of an anomaly in that most of the people who get Lupus and Fibromyalgia are women between the ages of 30 and 50.  It is unusual to have either one of these two illnesses, let alone both of them. 

So now, I am trying to get better.  I am learning what my new limits are, and working on a disability application.  I am seriously sensitive to light, and feel like a lazy man because all I do is sit in a dark room and rest 90% of the time. 

Marc is due to come home around Christmas, and I find myself fearing how my body will react to the stress of his being back home. 

Placement

Well, our youngest started his placement in a group home.  It is a six month placement.  Time will tell how much good it does.  In the past when we tried therapy, most places have said that their place wasn't right for him after the first three or four days.  Hopefully that won't happen here.

no moral compass

my heart is breaking.  No moral compass.  He steals anything that catches his eye.  His favorite statement when confronted about something that is missing is "I don't have it" or "I don't know".  The house is in an upheaval now because he has stolen something important to just about everyone in the house. When we finally find the item or object buried in his stuff he says he didn't take it. Then says he doesn't know why he lied about taking it. 

To all of my family that I ever stole from when I was a kid, I am so sorry for doing that to you.  I really had no idea the damage I was doing to you or our family.  Even the little things of no value mean something to someone.

Falling through the cracks

If the hospital won't keep our son, then there are other places that won't take him.  Most offer the same level of care. 

Interesting that everyone talks about how our son is falling through the cracks.

I told the social worker from the hospital that we would bring our son home if necessary until he can begin at facility that we have chosen.  He didn't seem to think that was a good idea, and recommended Foster Care.  The social worker also thought that the school would provide an in home teacher for our son.  School ends next week.  Given their track record, I doubt that they would do that.  At least not this year. 

We are talking about a child with abandonment issues, how is placing him in a foster home going to make him feel?  Waiting for the doctor to call from the Psych Unit. Also have calls into the Partnerships Care Coordinator.  The question here, isn't "what is good for mom and dad?"  the question here is "what is best for our son and the rest of the family?"

I don't believe that putting our son in foster care until a bed opens at the facility we have chosen is a good idea.

Brain Damage and the Child.

Met with the Child Psychologist. Somethings I was told weren't a huge surprise, some things made me sad. Our son needs placement at Manchester House. he presents as someone who has suffered traumatic abuse in his life. She said that from reading his case history, she doesn't believe that the abuse is real, though it appears real to... our son.

Our son is afraid of a number of things. First, he is afraid that we are going to kick him out of our family. Second he is afraid that someone is going to kill him. His response to confrontation is a reflection of that. It is called fight or flight. Even the slightest confrontation is seen by him as a threat to his life. This also explains his assaults on the furniture and other violent behavior both at school and at home.

Our son was telling the doctor about some of his life. According to our son, his birth mother took him home from the hospital and fed him illegal drugs. He also told the doctor that he had a party late one night while everyone is sleeping and with the help of his friends put whipping cream all over mom and dad while they were sleeping.

In the future he may have issues with Dissociative Identity Disorder and other things. He exhibits some traits of Autism, so Autism therapy may help. Although he can't be diagnosed as having Autism Spectrum Disorder. She said that our son has an incredible ability to jump from thought to thought so quickly that it makes the average person dizzy and that it is also surprising that his IQ is as high as it is given the limitations the brain damage places on his ability to concentrate.

It is hard to see our child in this light.

The doctor said that he may learn some alternative behaviors, but that they will be learned and susceptible to replacement by other memories, rather than a learned behavior that stays with him throughout his life.

The doctor also stated that when our son comes home he needs respite care for the rest of the family, as well as a self-contained classroom, a one-on-one aide and a few other things. She thinks that he will need to be transported to another district until trust can be established with school personnel. Comments were made about our sons experience with the school so far. It is sad that everyone but the school could see the difficulties that he is faced with.

In my role as the chief disciplinarian for our son, he is afraid of me. The doctor said that if mom had that role, he would be afraid of her.

There is no magic fix for him. All that we can hope for is that he will learn to cope with the life he has, and be as successful as he can be in that regard.

As he reaches adulthood, he will need group home care.

Value of Family

What value do you place on the family unit?  When it comes to a child with mental disability, after you have done everything humanly possible to work with the child, is it giving up to let someone else take on the challenges of raising him or her to adulthood?

We are faced with the dilemma of placing our son in a residential setting for part of his life.  If it isn't our failure as parents that caused this outcome, then why do I feel like a failure?  Ultimately, I guess it is about what is right for the rest of the family.  It doesn't make the decision any easier.  But in the end, we do have other children that we love and value just as much as him.  In my mind, the decision has already been made, it is just a matter of when the placement begins. 

I have to tell myself that we did not fail him.  Even though he is going to be placed, it is a matter of his continued success in life and out of a desire to give him every opportunity to succeed that we do this.  Still, I feel like we are failing him.  In time, I will come to the realization that this is the next step in his care plan and not my failure.  Like the doctor said, we held on for him far longer than most other parents would have.  It isn't our son's fault that he is this way.  It is a product of his bio-moms drug use.

If our son is not successful in the initial placement, he will be placed in another facility in the state.  If that is not successful, he will be placed at a facility in another state.  Our son will need care of some kind for the rest of his life.  Some aspects of it will include structured work placement and things of that nature.