About Me

My photo
Life is an adventure. Sometimes I yearn for boredom, yet it never comes. This is an account of my struggles & triumphs- my struggle to know God & understand the "why" behind it all. "Life is not about waiting for the storm to pass, it's about learning to dance in the rain" This is just me - learning to dance - sometimes gracefully, but most the time - stepping on my 2 left feet..

Friday, May 6, 2011

Our Story in a Nutshell

I just got off the phone with my son.  He is in tears.  It seems he made me a Mother's Day present in school today and he is really upset that he will not see me on Mother's Day.  (At least I think he's truly upset about this - sometimes it's hard to tell the difference between manipulation and reality)  He's had a rough week this week - lot's of aggression.  He wants to leave this facility very badly and it's really hard for me to have him there.  However, it's the best place for him -- tough love is much harder on the person giving it than the person receiving it. 

This is our best shot at recovery.  RAD children are masters at manipulating their environment - they are not allowing him to do it, so he is really acting out.  It was an absolute nightmare getting him into this facility - I pray they will do what's necessary.  The laws in Florida are ridiculous.  When our son escalated to a very dangerous point we were told by DCF that if we did not pick him up from the hospital we would be charged with abandonment & if we did pick him up and he hurt one of the children, they would remove all children from the home and charge us with neglect because we knew he was a danger to the children.  What were we supposed to do?  They were forcing us to make a choice of which child - they would not help our mentally ill child. They offered us no solutions, no hope. There is no provision in the law for a child being a danger to the family.  There are MANY, MANY families in our same position.  The state handed us a broken child a refused to give us the tools we needed to fix him.

Because our son has Cystic Fibrosis - they told me he did not qualify for intensive mental health care.  He's not allowed to have both conditions-- okay but he does.  We fought and fought to get him into a SIPP program in Florida and could not.  We applied through our insurance and were denied based on they did not think he would be cured in 150 days (no kidding - he has a mental health condition - not a cold).  We contacted Senator Bill Nelson's office and he conducted a congressional inquiry -- the insurance did finally approve care - now to get a facility to take him.  Facility after facility denied him based on medical complexity.  It seems everyone agrees - you are not allowed to have both a mental and a physical condition.  In the meantime his condition was deteriorating quickly.  We did tell the hospital we could not bring him home until he received intensive mental health care. (we did this under the advise of DCF, his advocate and our lawyer).  They immediately called the sheriffs dept and he was taken out of our care.  It wasn't long after this I introduced my baby to his "temporary" foster mom.  Hardest thing I have ever done in my life.  This proved to be a terrible placement.  They placed my CF child in a smoking home -- it was another fight to get him out of there - with the help of his advocate - we did.  We also were finally notified that a facility in Arkansas had accepted him.  They seemed perfect.  They had a neuro - psychiatrist and would preform MRI's and such on my son to determine the cause of his mental health issues (as I said - it's not just the RAD).  We were in for yet another fight.  He was no longer in our care.  The state said he could not go because it cost too much money.  REALLY???  it was covered by my insurance - it would cost the state nothing -- didn't matter - the answer was no.  We finally convinced DCF, but not CPI - we had to go in front of the judge to get approval - thankfully the judge sided with us.

We are currently working a case plan to bring my son back to our dependency.  The whole thing has been horrible - to get my child mental health care we had to make him a dependant of the state.  Why?  Because there is no provision in the law for these children or their families.  Many families have terminated their rights completely because they simply do not know what to do.  There seriously needs to be reform. 

I am very thankful for our child's advocate through Disability Rights Florida.  She was instrumental in helping us acquire care.  She went into meetings with DCF and CPI that I was not allowed into (yes as they determine what is best for your child - you have no say) and was a voice that helped keep our family together.

We remain battling - there is a staffing every so often that we have to attend and all records are going to the state - I do not have the final say on my child - again very frustrating.  All I want is for my family to be together - but I want my son to NOT be a danger to the other children -- for this we are punished.
We will continue fighting for the rights of ALL my children - Pray that God grants us wisdom in a situation that makes no sense.

Struggling to dance....

No comments:

Post a Comment